A few weeks ago I had my evil toe infection and was on antibiotics which meant I was off Methotrexate for three weeks. Methotrexate keeps my RA and its inflammation in check. But antibiotics and MX don't work together. Or if I feel I am getting a cold, I am not supposed to take my MX either.
So week one I felt like I was getting a cold so I skipped it. Week two my stupid toe started and I was on antibiotics so I skipped it. Week three I was still on antibiotics for my stupid toe so I skipped it. Then I had two weeks of my MX injections. Then I went for my regular blood work on Tuesday to check my blood for evil things related to RA and its treatment. No big deal.
Then Wednesday I am happily cooking away, having fun, enjoying myself, and I missed a phone call. I checked my voice mail a few minutes later to find one of 'those' messages.
"Hi this is Debbie from Dr. K's office calling about your blood work yesterday. Can you please call us when you can? We are here today till 430 and then back on Friday. Its not urgent (hah!) but please call."
Of course, I called immediately. I hate those messages with so much subtext behind them. Debbie answered and said she had the results of my blood work and wanted to talk to me about them.
Apparently my inflammation levels were up and she wanted to know if I was in the middle of a bad flare up. I said no, more of the usual but nothing bad. But then I told her I had been off MX for three weeks and only back on it for two weeks. She felt that would account for the increased levels but to be sure to keep my appointment with Dr K next week.
So its only inflammation but it would make sense that I have been feeling like crap. And yes I'll keep my appointment.
Showing posts with label rheumatoid arthritis. Show all posts
Showing posts with label rheumatoid arthritis. Show all posts
Saturday, November 28, 2015
Monday, November 23, 2015
Removing the 'crap shoot' aspect from RA treatment
Right now when you get diagnosed with rhuematoid arthritis this is the standard procedure:
The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.
It sucks.
Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.
But now a rocket scientist has come up with a blood test that will help take the 'trial and error' or 'crap shoot' process out of RA treatment. Its about time.
- Start with prednisone and plaquenile or a sulfa drug. Prednisone is used to reduce current inflammation for a relatively short period of time. Plaquenile is an old leprosy (really) drug that was found to also treat RA. But it can take 3 months or more to see the benefit Me? I was allergic to both prednisone and plaquenile.
- Oral methotrexate which can take 3 months or more to see the benefit. Methotrexate is the gold standard in treating RA but is also a very toxic chemotherapy drug where it is used in much larger doses. Me? It didn't work. My mother? After twenty years, she developed fibers in her lungs and went on oxygen for a while. Now she is off MX but her lungs are compromised.
- Injectable methotrexate. One shot every week, unless fighting a cold or anything. Immune system is severely compromised. But it may not work for everyone either.
- Biologics used in combination with methotrexate. But you can't take them if you had cancer. And after time, they may stop working so you need to switch to another injectable, expensive biologic.
- New round of RA drugs, including Xeljanz (which is being heavily marketed by Pfizer to me) which is another type of drug.
The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.
It sucks.
Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.
But now a rocket scientist has come up with a blood test that will help take the 'trial and error' or 'crap shoot' process out of RA treatment. Its about time.
Monday, November 9, 2015
Its Not a Contest
Its not a contest to see who has the biggest list of ailments or who is the healthiest. A few weeks ago, while at the gym, I met a woman who was in the breast cancer club - we recognized our lymphedema sleeves, which leads to conversations, how long has it been (15 years or so for her). We chatted a bit about the benefits of our gym for dilapidated people. She said she has Parkinsons and they worked very well with her. I said they had been so good with me working through my RA and fibromyalgia and her reply was 'okay, you win'.
I thought to myself, no it isn't a contest and I don't think I wanted her diagnosis either. She had tremors visibly.
Why did she think it was a contest? I have no idea. Maybe then she could think of me as someone in worse shape so she could feel better about herself? I have no idea.
I thought to myself, no it isn't a contest and I don't think I wanted her diagnosis either. She had tremors visibly.
Why did she think it was a contest? I have no idea. Maybe then she could think of me as someone in worse shape so she could feel better about herself? I have no idea.
Thursday, October 29, 2015
Have you ever wondered what RA feels like?
Well basically you feel like crap. I did find this article that gives it a good overview.
Combine these feelings:
- what you feel like when you have a really bad case of the flu and all the aches and pains
- what you feel like after a bad fall
- what you feel like the day after you ran a marathon
Combine all those and there you are. Except with RA it doesn't get better. You can control symptoms and medications can slow progress of the disease but it will never go away. You can be in remission for a long time but it will probably always come back at some point.
Today I am home with a cold and feeling all achy and sore. Life with RA sucks.
Combine these feelings:
- what you feel like when you have a really bad case of the flu and all the aches and pains
- what you feel like after a bad fall
- what you feel like the day after you ran a marathon
Combine all those and there you are. Except with RA it doesn't get better. You can control symptoms and medications can slow progress of the disease but it will never go away. You can be in remission for a long time but it will probably always come back at some point.
Today I am home with a cold and feeling all achy and sore. Life with RA sucks.
Thursday, October 15, 2015
My poor feet
My feet hurt these days courtesy of RA. I used to wear a size 7.5 wide. That is not the case any more. I have a bunion on my right foot which means I need to wear an 8 wide. I have to put orthotics in my shoes so I even wear at 8.5 wide.... Banana feet!
RA often affects the small bones of your hands and feet first. And yes it did get me there. My feet hurt often. I do exercises, wear inserts in my shoes. But I still hobble when I first get out of bed every day. The cat can beat me downstairs when I am having a bad day.
I think we are at the time, where I will need to talk to my rheumatologist about treatment options. I am on the ultra cheap, around for decades methotrexate. I can't take a lot of the new ones like Enbrel and Humira because they are not recommended for people who have had breast cancer (cancer the gift that keeps on giving). Those are the ones with the fancy commercials showing professional golfers saying they have RA but their Humira keeps it under control. No, I could get the newer, fancier, and more expensive Xeljanz.
So do I let my feet hurt or start paying a lot more? The real problem is the pain in my feet reflects joint damage there which needs to be stopped before it gets worse.
RA often affects the small bones of your hands and feet first. And yes it did get me there. My feet hurt often. I do exercises, wear inserts in my shoes. But I still hobble when I first get out of bed every day. The cat can beat me downstairs when I am having a bad day.
I think we are at the time, where I will need to talk to my rheumatologist about treatment options. I am on the ultra cheap, around for decades methotrexate. I can't take a lot of the new ones like Enbrel and Humira because they are not recommended for people who have had breast cancer (cancer the gift that keeps on giving). Those are the ones with the fancy commercials showing professional golfers saying they have RA but their Humira keeps it under control. No, I could get the newer, fancier, and more expensive Xeljanz.
So do I let my feet hurt or start paying a lot more? The real problem is the pain in my feet reflects joint damage there which needs to be stopped before it gets worse.
Monday, September 28, 2015
One of my other ailments
No today's post is not about my cancers. It is about one of my other ailments - rheumatoid arthritis. This is the ailment that makes my hands and feet hurt and getting out of bed in the morning a bit difficult. As opposed to rheumatoid which makes my whole back hurt or my degenerating disks which resemble an ice pick in my spine when its cranky or my left hip bursitis which also can remember an ice pick. (And I am on all the good drugs.)
The problem with RA is that your body's immune system turns on itself and starts attacking your joints. Currently it can be slowed and controlled by a wide variety of medications available. But it cannot be stopped and will continue to cripple your joints endlessly.
However now there is new research (because we always need more research to keep those researchers busy) which shows a way to possibly halt RA progression. Here is a less technical version and here is a very technical version. Basically there is a TLR gene which has a TLR5 receptor which hangs out with myeloid cells and that is proof that it is a technical topic.
I am just happy to hear there is something which might be able to stop the progression of RA. It is much worse than osteoarthritis which is what most people get from overuse. RA just happens - if you are lucky enough (which apparently I am).
So a perky little glimmer of hope on the RA horizon. Now I hope they can do something with my other ailments too. Go researchers!
The problem with RA is that your body's immune system turns on itself and starts attacking your joints. Currently it can be slowed and controlled by a wide variety of medications available. But it cannot be stopped and will continue to cripple your joints endlessly.
However now there is new research (because we always need more research to keep those researchers busy) which shows a way to possibly halt RA progression. Here is a less technical version and here is a very technical version. Basically there is a TLR gene which has a TLR5 receptor which hangs out with myeloid cells and that is proof that it is a technical topic.
I am just happy to hear there is something which might be able to stop the progression of RA. It is much worse than osteoarthritis which is what most people get from overuse. RA just happens - if you are lucky enough (which apparently I am).
So a perky little glimmer of hope on the RA horizon. Now I hope they can do something with my other ailments too. Go researchers!
Monday, September 14, 2015
Meanwhile back at the rheumatologists office
Monday I went to see the rheumatologist's nurse practitioner for the first time. She has the best decorated exam room.
And she has a whole wardrobe in the bottom drawer of her file cabinet. I can't wait to see her next outfit.
But I digress. Because of the mystery cysts/nodules on my elbow the NP asked me if I wanted to try switching from methotrexate to something else.... in case the bumps are rheumatoid nodules caused by methotrexate. She offered me Xeljanz. I opted to wait until we know what they are before making a change. Changing one medication often requires changing multiple medications for me so I do not quickly jump on that bandwagon.
I went to my before the birds MRI on Friday and should get the results tomorrow. Yesterday I also got the x-ray results on my elbow which say "Mild soft tissue thickening over the olecranon, consider bursitis." How helpful. But the NP made a note saying we will know more after the MRI results.
In the meantime, I decided to do a little research on Xeljanz as a treatment option. It costs a paltry $25 per day at the regular pharmacy or you can do the math - one hell of a lot each year. The mail order pharmacy should bring that down to $105/month which is much better but still. As a comparison, Methotrexate costs me $8.70 for about four months of drugs and needles.
Then yesterday in the mail, I received a box. From Pfizer???? What did they want? It was almost big enough to hold a bottle of wine (wishful thinking). I opened it up and found:
Now I think I know what the Xeljanz capsules will look like.... And inside the giant pill was:
Well, now my little marketing brain kicks in. Some how, I am on a list of people who said they are taking methotrexate for RA - I probably took some online survey or something.... I don't really care how they got my name and address. And then the marketing people said "let's send all these RA methotrexate people information on switching to our expensive new drug."
Then they dreamed up this lovely box and giant red and white capsule to fill with expensive marketing tools. My educated guess as amarketing person that it cost about $8 to print everything and get it in the mail, which is expensive as marketing premiums go, but nothing compared to the billions they make every year.
But its a waste for me - except for the co-pay savings card - as I do not base my decisions on marketing crap from big companies but on what my doctors suggest. And I want my MRI results before doing anything.
And she has a whole wardrobe in the bottom drawer of her file cabinet. I can't wait to see her next outfit.
But I digress. Because of the mystery cysts/nodules on my elbow the NP asked me if I wanted to try switching from methotrexate to something else.... in case the bumps are rheumatoid nodules caused by methotrexate. She offered me Xeljanz. I opted to wait until we know what they are before making a change. Changing one medication often requires changing multiple medications for me so I do not quickly jump on that bandwagon.
I went to my before the birds MRI on Friday and should get the results tomorrow. Yesterday I also got the x-ray results on my elbow which say "Mild soft tissue thickening over the olecranon, consider bursitis." How helpful. But the NP made a note saying we will know more after the MRI results.
In the meantime, I decided to do a little research on Xeljanz as a treatment option. It costs a paltry $25 per day at the regular pharmacy or you can do the math - one hell of a lot each year. The mail order pharmacy should bring that down to $105/month which is much better but still. As a comparison, Methotrexate costs me $8.70 for about four months of drugs and needles.
Then yesterday in the mail, I received a box. From Pfizer???? What did they want? It was almost big enough to hold a bottle of wine (wishful thinking). I opened it up and found:
- Ready for a change booklet - questions to ask your doctor
- Your body was made for better things than RA - a hefty brochure containing the prescribing safety information
- A lovely letter congratulating me for taking the first step in considering a change in medication
- A day by day RA symptom tracker complete with little colored post it notes (Made in China) to use to mark each day's efforts
- A co-pay savings card. With a maximum of $8000 in coverage each year - or the card to suck people in to switching.
Well, now my little marketing brain kicks in. Some how, I am on a list of people who said they are taking methotrexate for RA - I probably took some online survey or something.... I don't really care how they got my name and address. And then the marketing people said "let's send all these RA methotrexate people information on switching to our expensive new drug."
Then they dreamed up this lovely box and giant red and white capsule to fill with expensive marketing tools. My educated guess as amarketing person that it cost about $8 to print everything and get it in the mail, which is expensive as marketing premiums go, but nothing compared to the billions they make every year.
But its a waste for me - except for the co-pay savings card - as I do not base my decisions on marketing crap from big companies but on what my doctors suggest. And I want my MRI results before doing anything.
Saturday, April 18, 2015
Marketing to the patients
I know pharmaceutical companies are trying to market direct to companies through their ads on TV which include the low voiced list of possible side effects and the single page ads in magazines followed by two pages of fine print. We have all see them. Now I am seeing something different.
Yesterday I received an email inviting me to a webinar fun by Pfizer on one of their new medications for RA:
You will of course learn more about XELJANZ, first in a new class of oral treatment for RA.
Xeljanz is a prescription medicine called a Janus kinase (JAK) inhibitor. XELJANZ is used to treat adults with moderately to severely active rheumatoid arthritis in whom methotrexate did not work well. It is not known if XELJANZ is safe and effective in people with hepatitis B or C. XELJANZ is not for people with severe liver problems. It is not known if XELJANZ is safe and effective in children.
We’ll also listen to personal RA stories from patients being treated with XELJANZ, explore ways to change the conversation with your healthcare provider, and take a more active role in letting your healthcare provider know what's important to you.
May 8, 2014, could be an exciting opportunity to learn about rheumatoid arthritis and XELJANZ. Register for a live event or an online program now!"
Hmmm.... I thought. I am still thinking.They are promoting it as an educational event which of course will include information on Xeljanz. Do I want to attend? I am not sure. I would be happy to learn more about RA but not sure if I am interested in learning about a new medication.
And do I have moderate to severely active RA? And my methotrexate is working as far as I can tell. But its an interesting marketing tactic.
Yesterday I received an email inviting me to a webinar fun by Pfizer on one of their new medications for RA:
"Exploring Rheumatoid Arthritis – A Live Studio Broadcast Event
Join us on Thursday, May 8, 2014.
If you’re one of the hundreds of thousands of adults living with moderate to severe rheumatoid arthritis, Pfizer is hosting the first live event designed to explore ways you can help treat your RA.You will of course learn more about XELJANZ, first in a new class of oral treatment for RA.
Xeljanz is a prescription medicine called a Janus kinase (JAK) inhibitor. XELJANZ is used to treat adults with moderately to severely active rheumatoid arthritis in whom methotrexate did not work well. It is not known if XELJANZ is safe and effective in people with hepatitis B or C. XELJANZ is not for people with severe liver problems. It is not known if XELJANZ is safe and effective in children.
We’ll also listen to personal RA stories from patients being treated with XELJANZ, explore ways to change the conversation with your healthcare provider, and take a more active role in letting your healthcare provider know what's important to you.
May 8, 2014, could be an exciting opportunity to learn about rheumatoid arthritis and XELJANZ. Register for a live event or an online program now!"
Hmmm.... I thought. I am still thinking.They are promoting it as an educational event which of course will include information on Xeljanz. Do I want to attend? I am not sure. I would be happy to learn more about RA but not sure if I am interested in learning about a new medication.
And do I have moderate to severely active RA? And my methotrexate is working as far as I can tell. But its an interesting marketing tactic.
Wednesday, January 28, 2015
The placard question
I have had a somewhat long term debate with myself of whether I should get a handicapped parking placard. Some days finding a parking place and having to walk long ways - with full grocery carts, etc - get very tiresome and painful. RA and fibromyalgia can be a nasty combination. When one isn't hurting the other is.
Last year my primary care doctor told me I don't want to go down that route. I am not sure what she is thinking. Other than the fact that she is very healthy and in her 30s. I think my rheumatologist would be much more likely to sign the form if I asked her. She is more aware of my mobility issues.
I have already taken the safest parking space at work - this is a perk when you work for a small company and every uses the same space every day. When one woman retired a couple of years ago, it only took me one icy day to decide I was taking her space right next to the front door. Its also helpful when I leave my phone or lunch in the car.
But its not the same at the grocery store or the doctor's office where I park in the giant garage and go up to the top to park near the elevators/stairs. The thing about the placard is you don't need to use it if you don't want. If I'm having a good day, maybe I'll take a distant space. But there are times when my husband leaves me at the door to go park the car and then get the car.
Most days I am okay but some days I am not. I am tired and just need to finish what I need and get home and lie down. Those are the days where a placard would be helpful. Sometimes I look at people who park in the handicapped spaces with a tinge of jealousy. Other days I enjoy the walk from the far recesses. Some people look handicapped - canes, limps, oxygen, etc - and some don't - like me. Not all handicaps are visible.
And then there is this woman in Australia who got yelled at by some crabby man because she had a placard and didn't look handicapped. Just because you don't look like you need the space doesn't mean you don't need it. Appearances can be deceiving.
And am I too young to need one of those damn placards? Would it put me in the old fart category already? I may have the medical records of a 90 year old.
Last year my primary care doctor told me I don't want to go down that route. I am not sure what she is thinking. Other than the fact that she is very healthy and in her 30s. I think my rheumatologist would be much more likely to sign the form if I asked her. She is more aware of my mobility issues.
I have already taken the safest parking space at work - this is a perk when you work for a small company and every uses the same space every day. When one woman retired a couple of years ago, it only took me one icy day to decide I was taking her space right next to the front door. Its also helpful when I leave my phone or lunch in the car.
But its not the same at the grocery store or the doctor's office where I park in the giant garage and go up to the top to park near the elevators/stairs. The thing about the placard is you don't need to use it if you don't want. If I'm having a good day, maybe I'll take a distant space. But there are times when my husband leaves me at the door to go park the car and then get the car.
Most days I am okay but some days I am not. I am tired and just need to finish what I need and get home and lie down. Those are the days where a placard would be helpful. Sometimes I look at people who park in the handicapped spaces with a tinge of jealousy. Other days I enjoy the walk from the far recesses. Some people look handicapped - canes, limps, oxygen, etc - and some don't - like me. Not all handicaps are visible.
And then there is this woman in Australia who got yelled at by some crabby man because she had a placard and didn't look handicapped. Just because you don't look like you need the space doesn't mean you don't need it. Appearances can be deceiving.
And am I too young to need one of those damn placards? Would it put me in the old fart category already? I may have the medical records of a 90 year old.
Monday, January 26, 2015
It is possible that things can go in the right direction
In 2007, when I was in chemo, nausea was my constant friend. It didn't stop me from eating, in fact I did gain weight during chemo. It disappeared after chemo.
A few weeks ago, my rheumatologist put me on sulfasalazine to help with my rheumatoid arthritis. Its just like chemo again in that it makes me feel nauseous all over again. I have felt nauseous again and again since I started taking a few weeks ago. This nausea made me actually do some research on it even though I did listen to my doctor who said nausea could happen.
So I looked it up on drugs.com and there it is under side effects that may go
"Some sulfasalazine side effects may not need any medical attention. As your body
gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:
More common
A few weeks ago, my rheumatologist put me on sulfasalazine to help with my rheumatoid arthritis. Its just like chemo again in that it makes me feel nauseous all over again. I have felt nauseous again and again since I started taking a few weeks ago. This nausea made me actually do some research on it even though I did listen to my doctor who said nausea could happen.
So I looked it up on drugs.com and there it is under side effects that may go
"Some sulfasalazine side effects may not need any medical attention. As your body
gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:More common
- Abdominal or stomach pain or upset
- decreased weight
- Welts
- Discoloration of the skin or urine
- hair loss or thinning of the hair
- swelling or inflammation of the mouth"
Saturday, January 24, 2015
My time span
These days, every day I have an expiration time. This means at no point past that point in time should I attempt to do anything more than knit, read, or watch TV. This time frame means that every day I need to plan out my day and not spend more time than I should at any point. Every week I sit down and plan out my little time periods so I can get through my days and what I need to get done..
Today my day is planned. Being lazy until 10 am when we will go get the last necessary items for Christmas dinner, make two pies, precook the squash, sort out dishes to use tomorrow, and take a nap while my husband sets the table and cleans up the kitchen.
Tomorrow is Christmas and guests are expected at 2pm to eat at 3pm. I have to put a ham and scalloped potatoes in the oven around 115 and then pick up relatives. We will make the green salad ahead and cook the green beans and heat squash at the last minute. After everyone leaves, which I assume will be by 8pm, I can go to bed early after we run the dishwasher.
Don't I lead an exciting life? This is life with RA and fibromyalgia. For more thoughts on what life with RA go read this.
Since my diagnosis just over two years ago, my days are shorter and shorter but I hope to make them better and better but doing what I want to and not the stuff I don't want.
Today my day is planned. Being lazy until 10 am when we will go get the last necessary items for Christmas dinner, make two pies, precook the squash, sort out dishes to use tomorrow, and take a nap while my husband sets the table and cleans up the kitchen.
Tomorrow is Christmas and guests are expected at 2pm to eat at 3pm. I have to put a ham and scalloped potatoes in the oven around 115 and then pick up relatives. We will make the green salad ahead and cook the green beans and heat squash at the last minute. After everyone leaves, which I assume will be by 8pm, I can go to bed early after we run the dishwasher.
Don't I lead an exciting life? This is life with RA and fibromyalgia. For more thoughts on what life with RA go read this.
Since my diagnosis just over two years ago, my days are shorter and shorter but I hope to make them better and better but doing what I want to and not the stuff I don't want.
Tuesday, January 20, 2015
My time span
These days, every day I have an expiration time. This means at no point past that point in time should I attempt to do anything more than knit, read, or watch TV. This time frame means that every day I need to plan out my day and not spend more time than I should at any point. Every week I sit down and plan out my little time periods so I can get through my days and what I need to get done..
Today my day is planned. Being lazy until 10 am when we will go get the last necessary items for Christmas dinner, make two pies, precook the squash, sort out dishes to use tomorrow, and take a nap while my husband sets the table and cleans up the kitchen.
Tomorrow is Christmas and guests are expected at 2pm to eat at 3pm. I have to put a ham and scalloped potatoes in the oven around 115 and then pick up relatives. We will make the green salad ahead and cook the green beans and heat squash at the last minute. After everyone leaves, which I assume will be by 8pm, I can go to bed early after we run the dishwasher.
Don't I lead an exciting life? This is life with RA and fibromyalgia. For more thoughts on what life with RA go read this.
Since my diagnosis just over two years ago, my days are shorter and shorter but I hope to make them better and better but doing what I want to and not the stuff I don't want.
Today my day is planned. Being lazy until 10 am when we will go get the last necessary items for Christmas dinner, make two pies, precook the squash, sort out dishes to use tomorrow, and take a nap while my husband sets the table and cleans up the kitchen.
Tomorrow is Christmas and guests are expected at 2pm to eat at 3pm. I have to put a ham and scalloped potatoes in the oven around 115 and then pick up relatives. We will make the green salad ahead and cook the green beans and heat squash at the last minute. After everyone leaves, which I assume will be by 8pm, I can go to bed early after we run the dishwasher.
Don't I lead an exciting life? This is life with RA and fibromyalgia. For more thoughts on what life with RA go read this.
Since my diagnosis just over two years ago, my days are shorter and shorter but I hope to make them better and better but doing what I want to and not the stuff I don't want.
I am confused
I admit to being confused. I have rheumatoid arthritis. I am on injected methotrexate. Am I supposed to be feeling better? Because I am not. I keep forgetting to ask my rheumatologist about this.
I know I have other pain causing ailments - degenerating disks in my back cause pain in my lower back. I know all about these pains. If I bend over to pick things up, my back reminds me I should not - never mind that you are supposed to squat and lift with your knees. But that is one set of pains.
Then I have the fibromyalgia induced pains. Those are the ones which are not back pains or rheumatoid pains. They appear as things like bone deep pain in my arms or elecgtrical pains across my lower back.
And I have osteoarthritis pains. That is when my knees crunch when I bend them. I have Snap, Crackle, and Pop and their extended family reunion living in my left knee. And my right knee and a few other assorted places.
But I know I have RA pain in places that never really feel better. This includes my hands where my knuckles always feel inflamed and swollen. My wrists, my shoulders, my ankles, and my feet. And other places that are symmetrical. RA pains are easier to pin point as they are symmetrical. I am on medication and anti-inflammatories but they are always there.
If I judge my health based on the television commercials where people are moving about freely while they are on medication for their RA. I clearly not atfor a commercial any time soon.
But my real question is am I supposed to not have pain from my RA? Or is the treatment not working or am I living in a constant flare? And combined with fibro fog and fatigue, I am a walking disaster.
I think I need to write myself some notes and bring them with me to my next rheumatologist visit in January. Crap. That's a long time from now.
I know I have other pain causing ailments - degenerating disks in my back cause pain in my lower back. I know all about these pains. If I bend over to pick things up, my back reminds me I should not - never mind that you are supposed to squat and lift with your knees. But that is one set of pains.
Then I have the fibromyalgia induced pains. Those are the ones which are not back pains or rheumatoid pains. They appear as things like bone deep pain in my arms or elecgtrical pains across my lower back.
And I have osteoarthritis pains. That is when my knees crunch when I bend them. I have Snap, Crackle, and Pop and their extended family reunion living in my left knee. And my right knee and a few other assorted places.
But I know I have RA pain in places that never really feel better. This includes my hands where my knuckles always feel inflamed and swollen. My wrists, my shoulders, my ankles, and my feet. And other places that are symmetrical. RA pains are easier to pin point as they are symmetrical. I am on medication and anti-inflammatories but they are always there.
If I judge my health based on the television commercials where people are moving about freely while they are on medication for their RA. I clearly not atfor a commercial any time soon.
But my real question is am I supposed to not have pain from my RA? Or is the treatment not working or am I living in a constant flare? And combined with fibro fog and fatigue, I am a walking disaster.
I think I need to write myself some notes and bring them with me to my next rheumatologist visit in January. Crap. That's a long time from now.
Monday, January 19, 2015
It is possible that things can go in the right direction
In 2007, when I was in chemo, nausea was my constant friend. It didn't stop me from eating, in fact I did gain weight during chemo. It disappeared after chemo.
A few weeks ago, my rheumatologist put me on sulfasalazine to help with my rheumatoid arthritis. Its just like chemo again in that it makes me feel nauseous all over again. I have felt nauseous again and again since I started taking a few weeks ago. This nausea made me actually do some research on it even though I did listen to my doctor who said nausea could happen.
So I looked it up on drugs.com and there it is under side effects that may go
"Some sulfasalazine side effects may not need any medical attention. As your body gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:
More common
A few weeks ago, my rheumatologist put me on sulfasalazine to help with my rheumatoid arthritis. Its just like chemo again in that it makes me feel nauseous all over again. I have felt nauseous again and again since I started taking a few weeks ago. This nausea made me actually do some research on it even though I did listen to my doctor who said nausea could happen.
So I looked it up on drugs.com and there it is under side effects that may go
"Some sulfasalazine side effects may not need any medical attention. As your body
gets used to the medicine these side effects may disappear. Your health care professional may be able to help you prevent or reduce these side effects, but do check with them if any of the following side effects continue, or if you are concerned about them:More common
- Abdominal or stomach pain or upset
- decreased weight
- Welts
- Discoloration of the skin or urine
- hair loss or thinning of the hair
- swelling or inflammation of the mouth"
Removing the 'crap shoot' aspect from RA treatment
Right now when you get diagnosed with rhuematoid arthritis this is the standard procedure:
The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.
It sucks.
Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.
But now a rocket scientist has come up with a blood test that will help take the 'trial and error' or 'crap shoot' process out of RA treatment. Its about time.
- Start with prednisone and plaquenile or a sulfa drug. Prednisone is used to reduce current inflammation for a relatively short period of time. Plaquenile is an old leprosy (really) drug that was found to also treat RA. But it can take 3 months or more to see the benefit Me? I was allergic to both prednisone and plaquenile.
- Oral methotrexate which can take 3 months or more to see the benefit. Methotrexate is the gold standard in treating RA but is also a very toxic chemotherapy drug where it is used in much larger doses. Me? It didn't work. My mother? After twenty years, she developed fibers in her lungs and went on oxygen for a while. Now she is off MX but her lungs are compromised.
- Injectable methotrexate. One shot every week, unless fighting a cold or anything. Immune system is severely compromised. But it may not work for everyone either.
- Biologics used in combination with methotrexate. But you can't take them if you had cancer. And after time, they may stop working so you need to switch to another injectable, expensive biologic.
- New round of RA drugs, including Xeljanz (which is being heavily marketed by Pfizer to me) which is another type of drug.
The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.
It sucks.
Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.
But now a rocket scientist has come up with a blood test that will help take the 'trial and error' or 'crap shoot' process out of RA treatment. Its about time.
Things with a cure
The CDC recently warned of these new germs that are resistant to treatment - the superbugs as they are called. They are out there and killing more and more of us as they resist most treatments. While the pictures of them are pretty cool, the germs themselves are not.
There are other ailments with out a cure. I have a few:
Fibromyalgia
Rheumatoid
Degenerating disks
There are lots of others that I don't have for which I am grateful.
They have treatments to ease the symptoms but not cures. Medical research is needed for these nasty germs and the incurable ailments.
Perhaps I am feeling a little down this morning because when I got out of bed everything hurt. So I am going with plan B - stay in bed until the pain meds kick in. The cat is hanging out with me and the TV is on in the background so I am as comfy as I can get.
But if you don't have these you don't understand. Today I feel like crap. I have plans and will do my best to get through them. But the problem is I know that every day can be like this for the rest of my life. Its pretty damn depressing.
I may sneer at medical studies (because we always need more research) but we really do need the research. There are lots of ailments that do not have cures. And we have these new treatment resistant germs that pop up and kill people. Never mind the bird flus and all the other new ailments.
I think I need a vacation. Oh that's right I am on vacation.... Off to have fun and not be depressing....
Fibromyalgia
Rheumatoid
Degenerating disks
There are lots of others that I don't have for which I am grateful.
They have treatments to ease the symptoms but not cures. Medical research is needed for these nasty germs and the incurable ailments.
Perhaps I am feeling a little down this morning because when I got out of bed everything hurt. So I am going with plan B - stay in bed until the pain meds kick in. The cat is hanging out with me and the TV is on in the background so I am as comfy as I can get.
But if you don't have these you don't understand. Today I feel like crap. I have plans and will do my best to get through them. But the problem is I know that every day can be like this for the rest of my life. Its pretty damn depressing.
I may sneer at medical studies (because we always need more research) but we really do need the research. There are lots of ailments that do not have cures. And we have these new treatment resistant germs that pop up and kill people. Never mind the bird flus and all the other new ailments.
I think I need a vacation. Oh that's right I am on vacation.... Off to have fun and not be depressing....
Sunday, January 18, 2015
Have you ever wondered what RA feels like?
Well basically you feel like crap. I did find this article that gives it a good overview.
Combine these feelings:
- what you feel like when you have a really bad case of the flu and all the aches and pains
- what you feel like after a bad fall
- what you feel like the day after you ran a marathon
Combine all those and there you are. Except with RA it doesn't get better. You can control symptoms and medications can slow progress of the disease but it will never go away. You can be in remission for a long time but it will probably always come back at some point.
Today I am home with a cold and feeling all achy and sore. Life with RA sucks.
Combine these feelings:
- what you feel like when you have a really bad case of the flu and all the aches and pains
- what you feel like after a bad fall
- what you feel like the day after you ran a marathon
Combine all those and there you are. Except with RA it doesn't get better. You can control symptoms and medications can slow progress of the disease but it will never go away. You can be in remission for a long time but it will probably always come back at some point.
Today I am home with a cold and feeling all achy and sore. Life with RA sucks.
Marketing to the patients
I know pharmaceutical companies are trying to market direct to companies through their ads on TV which include the low voiced list of possible side effects and the single page ads in magazines followed by two pages of fine print. We have all see them. Now I am seeing something different.
Yesterday I received an email inviting me to a webinar fun by Pfizer on one of their new medications for RA:
You will of course learn more about XELJANZ, first in a new class of oral treatment for RA.
Xeljanz is a prescription medicine called a Janus kinase (JAK) inhibitor. XELJANZ is used to treat adults with moderately to severely active rheumatoid arthritis in whom methotrexate did not work well. It is not known if XELJANZ is safe and effective in people with hepatitis B or C. XELJANZ is not for people with severe liver problems. It is not known if XELJANZ is safe and effective in children.
We’ll also listen to personal RA stories from patients being treated with XELJANZ, explore ways to change the conversation with your healthcare provider, and take a more active role in letting your healthcare provider know what's important to you.
May 8, 2014, could be an exciting opportunity to learn about rheumatoid arthritis and XELJANZ. Register for a live event or an online program now!"
Hmmm.... I thought. I am still thinking.They are promoting it as an educational event which of course will include information on Xeljanz. Do I want to attend? I am not sure. I would be happy to learn more about RA but not sure if I am interested in learning about a new medication.
And do I have moderate to severely active RA? And my methotrexate is working as far as I can tell. But its an interesting marketing tactic.
Yesterday I received an email inviting me to a webinar fun by Pfizer on one of their new medications for RA:
"Exploring Rheumatoid Arthritis – A Live Studio Broadcast Event
Join us on Thursday, May 8, 2014.
If you’re one of the hundreds of thousands of adults living with moderate to severe rheumatoid arthritis, Pfizer is hosting the first live event designed to explore ways you can help treat your RA.You will of course learn more about XELJANZ, first in a new class of oral treatment for RA.
Xeljanz is a prescription medicine called a Janus kinase (JAK) inhibitor. XELJANZ is used to treat adults with moderately to severely active rheumatoid arthritis in whom methotrexate did not work well. It is not known if XELJANZ is safe and effective in people with hepatitis B or C. XELJANZ is not for people with severe liver problems. It is not known if XELJANZ is safe and effective in children.
We’ll also listen to personal RA stories from patients being treated with XELJANZ, explore ways to change the conversation with your healthcare provider, and take a more active role in letting your healthcare provider know what's important to you.
May 8, 2014, could be an exciting opportunity to learn about rheumatoid arthritis and XELJANZ. Register for a live event or an online program now!"
Hmmm.... I thought. I am still thinking.They are promoting it as an educational event which of course will include information on Xeljanz. Do I want to attend? I am not sure. I would be happy to learn more about RA but not sure if I am interested in learning about a new medication.
And do I have moderate to severely active RA? And my methotrexate is working as far as I can tell. But its an interesting marketing tactic.
Thursday, January 15, 2015
Inflammation and me
A few weeks ago I had my evil toe infection and was on antibiotics which meant I was off Methotrexate for three weeks. Methotrexate keeps my RA and its inflammation in check. But antibiotics and MX don't work together. Or if I feel I am getting a cold, I am not supposed to take my MX either.
So week one I felt like I was getting a cold so I skipped it. Week two my stupid toe started and I was on antibiotics so I skipped it. Week three I was still on antibiotics for my stupid toe so I skipped it. Then I had two weeks of my MX injections. Then I went for my regular blood work on Tuesday to check my blood for evil things related to RA and its treatment. No big deal.
Then Wednesday I am happily cooking away, having fun, enjoying myself, and I missed a phone call. I checked my voice mail a few minutes later to find one of 'those' messages.
"Hi this is Debbie from Dr. K's office calling about your blood work yesterday. Can you please call us when you can? We are here today till 430 and then back on Friday. Its not urgent (hah!) but please call."
Of course, I called immediately. I hate those messages with so much subtext behind them. Debbie answered and said she had the results of my blood work and wanted to talk to me about them.
Apparently my inflammation levels were up and she wanted to know if I was in the middle of a bad flare up. I said no, more of the usual but nothing bad. But then I told her I had been off MX for three weeks and only back on it for two weeks. She felt that would account for the increased levels but to be sure to keep my appointment with Dr K next week.
So its only inflammation but it would make sense that I have been feeling like crap. And yes I'll keep my appointment.
So week one I felt like I was getting a cold so I skipped it. Week two my stupid toe started and I was on antibiotics so I skipped it. Week three I was still on antibiotics for my stupid toe so I skipped it. Then I had two weeks of my MX injections. Then I went for my regular blood work on Tuesday to check my blood for evil things related to RA and its treatment. No big deal.
Then Wednesday I am happily cooking away, having fun, enjoying myself, and I missed a phone call. I checked my voice mail a few minutes later to find one of 'those' messages.
"Hi this is Debbie from Dr. K's office calling about your blood work yesterday. Can you please call us when you can? We are here today till 430 and then back on Friday. Its not urgent (hah!) but please call."
Of course, I called immediately. I hate those messages with so much subtext behind them. Debbie answered and said she had the results of my blood work and wanted to talk to me about them.
Apparently my inflammation levels were up and she wanted to know if I was in the middle of a bad flare up. I said no, more of the usual but nothing bad. But then I told her I had been off MX for three weeks and only back on it for two weeks. She felt that would account for the increased levels but to be sure to keep my appointment with Dr K next week.
So its only inflammation but it would make sense that I have been feeling like crap. And yes I'll keep my appointment.
The placard question
I have had a somewhat long term debate with myself of whether I should get a handicapped parking placard. Some days finding a parking place and having to walk long ways - with full grocery carts, etc - get very tiresome and painful. RA and fibromyalgia can be a nasty combination. When one isn't hurting the other is.
Last year my primary care doctor told me I don't want to go down that route. I am not sure what she is thinking. Other than the fact that she is very healthy and in her 30s. I think my rheumatologist would be much more likely to sign the form if I asked her. She is more aware of my mobility issues.
I have already taken the safest parking space at work - this is a perk when you work for a small company and every uses the same space every day. When one woman retired a couple of years ago, it only took me one icy day to decide I was taking her space right next to the front door. Its also helpful when I leave my phone or lunch in the car.
But its not the same at the grocery store or the doctor's office where I park in the giant garage and go up to the top to park near the elevators/stairs. The thing about the placard is you don't need to use it if you don't want. If I'm having a good day, maybe I'll take a distant space. But there are times when my husband leaves me at the door to go park the car and then get the car.
Most days I am okay but some days I am not. I am tired and just need to finish what I need and get home and lie down. Those are the days where a placard would be helpful. Sometimes I look at people who park in the handicapped spaces with a tinge of jealousy. Other days I enjoy the walk from the far recesses. Some people look handicapped - canes, limps, oxygen, etc - and some don't - like me. Not all handicaps are visible.
And then there is this woman in Australia who got yelled at by some crabby man because she had a placard and didn't look handicapped. Just because you don't look like you need the space doesn't mean you don't need it. Appearances can be deceiving.
And am I too young to need one of those damn placards? Would it put me in the old fart category already? I may have the medical records of a 90 year old.
Last year my primary care doctor told me I don't want to go down that route. I am not sure what she is thinking. Other than the fact that she is very healthy and in her 30s. I think my rheumatologist would be much more likely to sign the form if I asked her. She is more aware of my mobility issues.
I have already taken the safest parking space at work - this is a perk when you work for a small company and every uses the same space every day. When one woman retired a couple of years ago, it only took me one icy day to decide I was taking her space right next to the front door. Its also helpful when I leave my phone or lunch in the car.
But its not the same at the grocery store or the doctor's office where I park in the giant garage and go up to the top to park near the elevators/stairs. The thing about the placard is you don't need to use it if you don't want. If I'm having a good day, maybe I'll take a distant space. But there are times when my husband leaves me at the door to go park the car and then get the car.
Most days I am okay but some days I am not. I am tired and just need to finish what I need and get home and lie down. Those are the days where a placard would be helpful. Sometimes I look at people who park in the handicapped spaces with a tinge of jealousy. Other days I enjoy the walk from the far recesses. Some people look handicapped - canes, limps, oxygen, etc - and some don't - like me. Not all handicaps are visible.
And then there is this woman in Australia who got yelled at by some crabby man because she had a placard and didn't look handicapped. Just because you don't look like you need the space doesn't mean you don't need it. Appearances can be deceiving.
And am I too young to need one of those damn placards? Would it put me in the old fart category already? I may have the medical records of a 90 year old.
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