Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Ive been having a really rough time. Diagnosed Fall 2013 I went first on Sulfasalazine, then off of that and onto Methotrexate but couldnt tolerate due to severe migraines for several days after I took it. Stopped MTX, started Plaquenil (early 2014) with no improvement so added Leflunomide (summer 2014) as well as being on Prednisone 5-10 mg for 2 yrs. Continued having a lot of problems so in April (2015) added Remicade infusion. In August I came off Prednisone for about a month and my rheumy said for the first time since diagnosis my inflammation markers were starting to come down some. I was still having pain but I was hopeful.
Then 3-4 wks ago I was hit with the worst flare I have had since this started. For the first time I couldnt walk without severe pain (not normal pain I get- this kind had u stop to rest after a couple steps) And for the first time although I have a lot of trouble with my hands when this flare hit I could hardly even pick up a cup. This last flare also brought on something else I hadnt had a serious problem with until recently and that is the severe fatigue and feeling overall ill. So, a few weeks ago I started Prednisone again which knocked out the severe pain on walking (just normal pain now) and I can hold a glass without assistance. But I had an E.R visit for chest pain and they said it was inflammation right before I went back on Prednisone a few weeks ago. But the Prednisone hasnt helped that very much and its harder to breathe so they restarted me on my asthma meds which is helping. The degeneration in my upper spine and back is flaring and I am miserable.
It has only been 4 treatments with Remicade, I have my fifth one tomorrow but the cost is really hurting me. I am on disability and I have just my Social Security income and right now we are doing treatments every 8 wks and my portion is $650.00 each treatment. I do not qualify for a prescription card because Medicare is a government funded plan. Ive called around and am having a lot of trouble finding assistance with funding. Im going to talk with my dr about if she has any recommendations. Im too young for a Medicare supplement policy that pays the co-pays. If youre under 62 or 65yrs they wont cover you unless you pay a monthly premium of around 1,000.00. Right now I am under the catastrophic coverage with my medications covered under my Medicare Part D 100% thru the end of the year but infusions are under Medicare Part B which I have to pay 20%, thus the 650.00 co-pay. Im afraid my Dr will want to go with infusions closer together since every 8 wks is just the starter recommendation but I cant afford it.
Im very depressed. Besides the severe pain my head still wants to keep my apt clean and volunteer like I always have but my body says NO. Ive loaded up with pain meds and did some of my activities and really regretted it esp at night and early morning but I just cant give up yet.
At this point I dont even know why Im still on Plaquenil and Leflunomide ..I guess it may help the biologic?? I read the posts on here and I follow your stories and I pray for all of you. This took me all day to write this because it hurts and its hard to organize my thoughts. I hope one day I can be more helpful to all of you. Im really sorry I havent been.
Then 3-4 wks ago I was hit with the worst flare I have had since this started. For the first time I couldnt walk without severe pain (not normal pain I get- this kind had u stop to rest after a couple steps) And for the first time although I have a lot of trouble with my hands when this flare hit I could hardly even pick up a cup. This last flare also brought on something else I hadnt had a serious problem with until recently and that is the severe fatigue and feeling overall ill. So, a few weeks ago I started Prednisone again which knocked out the severe pain on walking (just normal pain now) and I can hold a glass without assistance. But I had an E.R visit for chest pain and they said it was inflammation right before I went back on Prednisone a few weeks ago. But the Prednisone hasnt helped that very much and its harder to breathe so they restarted me on my asthma meds which is helping. The degeneration in my upper spine and back is flaring and I am miserable.
It has only been 4 treatments with Remicade, I have my fifth one tomorrow but the cost is really hurting me. I am on disability and I have just my Social Security income and right now we are doing treatments every 8 wks and my portion is $650.00 each treatment. I do not qualify for a prescription card because Medicare is a government funded plan. Ive called around and am having a lot of trouble finding assistance with funding. Im going to talk with my dr about if she has any recommendations. Im too young for a Medicare supplement policy that pays the co-pays. If youre under 62 or 65yrs they wont cover you unless you pay a monthly premium of around 1,000.00. Right now I am under the catastrophic coverage with my medications covered under my Medicare Part D 100% thru the end of the year but infusions are under Medicare Part B which I have to pay 20%, thus the 650.00 co-pay. Im afraid my Dr will want to go with infusions closer together since every 8 wks is just the starter recommendation but I cant afford it.
Im very depressed. Besides the severe pain my head still wants to keep my apt clean and volunteer like I always have but my body says NO. Ive loaded up with pain meds and did some of my activities and really regretted it esp at night and early morning but I just cant give up yet.
At this point I dont even know why Im still on Plaquenil and Leflunomide ..I guess it may help the biologic?? I read the posts on here and I follow your stories and I pray for all of you. This took me all day to write this because it hurts and its hard to organize my thoughts. I hope one day I can be more helpful to all of you. Im really sorry I havent been.
If you want my personal opinion, if Plaquenil is not working, I would go off of it. My Rheumatologist made me stay on it (the second time it did not work!) for 10 months too long. He said what if it was working .0001%. I said it wasn't and came off of it.
Same for Arava. It is designed to work with a biologic, so you might want to wait a little longer till the Remicade starts working, to see if it helps.
It sounds like your disease is overwhelming your drugs. I would press for something else if Remicade does not work. You still have many drugs to try.
As for prednisone, the drug we love to hate, it works. But be aware of the side effects, because it is one dangerous drug!
Of course, it is the whole truth I would not be taking their drugs without assistance. So maybe they knew I was serious?
I guess you can only try!