Rheumatoid Arthritis is more than just a pain in the arse

I have RA and its a real pain in the arse. I am writing this because I am having my first flare up since I got the disease 5 years ago and I am at my wits end, like most people I like to move , run , jump right now I cant. I can type this with two fingers, all sufferers out there with RA know how depressing it can be when you cant do anything physical to help your loved ones or yourself. Right now and this sounds pathetic but it really bothers me, my wife and her brother and father are over at our house mowing the lawn and wiper snipping the edges and basically tiding up the garden. I look after the garden thats my thing.....not right now it isn't.
When I was first diagnosed with this awful autoimmune disease I was 31 years old working as an artist and furniture maker, most of my work was very hands on and physical and thats just how I liked it. Sitting at a desk was not for me. I loved to run and play tennis with friends so at first when my knee started to swell and twinge with pain I just ignored it and thought it was just something I had done through regular sport. I thought it would fix itself as these things had done in the past, and just go away. The pain and inflammation got worse each day to the point I could hardly walk, at the time my inflammation was just in my right knee so I would favour left leg to give my right a break.A week or so later both knees were the size of oranges and took myself off to the Dr. After some tests and the result was RA I was revered to a Rheumatoligist and given injections of cortisone and oral drugs both steroidal and non steroidal. The cortisone gave me the fastest relief but it seemed the drugs didn't do much at all. All they seemed to do was increase my weight and my temper, I hated taking the cocktail of drugs that were being prescribed they just didn't seem to be working the Dr changed around my dosages and combinations to no real avail. I was still working 8 to 12 hours a day 5 days a week making furniture but it hurt and I was fatigued all the time, I kept going back to the Dr for cortisone injections into my knees every month for about a year just to keep working and functioning at about 65%.I was fed up, nothing seemed to work angry and over Drs, blood tests, injections, waiting rooms and time off work i did what in hindsight probably shouldn't have done. I fired my RA Dr and took myself off all the drugs, I was over it big time. Then something weird happened, my swelling started to go down and my energy levels came back, I started to play tennis again not as hard and physical as before but I was jogging for balls and hitting them without any RA pain. This was great!!! I went to my local G P and asked for a blood test, results rheumatoid factor 0.
So I have been in complete remission for 3 years until two months ago, and let me tell you it has come back with vengeance, both knees, jaw, neck, wrists, ankles, legs I have my second appointment with the RA Dr today. Maybe I should have just stayed on the drugs and my flare up wouldn't have been like this.......... I don't know all I know is that when you are in remission, make the most of your time. Go surfing

Hi Ms Ochie,

Thanks for your response I agree with what you said "Do reasonable exercises daily if possible, to keep your muscles strong so your bones and joints will stay aligned for a long time and to help with the pain."

I am swimming laps now super boring but getting more into it as time goes bye, I feel much better after each swim even if i can only walk the length of the pool some times just the low impact movement helps.

Hi Denita,

Well I got my cortisone shots into the old knees yesterday afternoon and it seems to have worked a treat. My wife moved into the spare room in the middle of the night because I was snoring, normally this would be seen as a bad thing but I just meant for once I had much less pain and was in a deep sleep. lol

So this time the Dr had not run out of local anaesthetic, and the shots were much more bearable than last time.

He has upped my drugs, plaquenil twice a day, miobic 15mg once a day, folic acid 1mg per day, and methotrexate 15mg on wednesday and 10mg on thursday. These are all non steroidal drugs except for the cortisone shots and I am happy with that as the oral steroids play havoc with my body and I really don't like to take them everyday especially that prednisone!!

So the plan is,.....and I would love some feed back on this, to keep me on these drugs for 2 months and for me to have inflammation of three or more joints in two months still so I can qualify for some very expensive "biological drugs".

Currently available biologic agents act as inhibitors of the cytokines IL-1 or TNF. Cytokines are messenger molecules made by many of the body's cells that act to excite other immune system cells. Interleukin-1 (L-1) and tumor necrosis factor (TNF) are made in large amounts in rheumatoid arthritis and other forms of inflammation. In these diseases, TNF or IL-1 act to increase inflammation, similar to the effect of gasoline on a fire. However, in rheumatoid arthritis TNF or IL-1 (the gasoline) acts to excite the inflamed joint (the fire). Hence, these cytokines amplify and worsen inflammation and joint damage. Biologic agents were made to specifically attach to TNF or IL-1 and inhibit or inactivate them. Table 1 compares the different biologic drugs used in rheumatoid arthritis.

So I guess It is win win, If the non steroidal drugs work and my joint flares go down within two months great, if not then plan b and I will be able to qualify for the biological drugs.

Biologic agents represent a new kind of treatment for patients with inflammatory arthritis, like rheumatoid arthritis. They are expensive (usually over $12,000 per year in the US)

Here in Australia they are heavily subsidised by the government which makes them affordable yet harder to get. Let me know if they have worked for you or anyone you may know I would love to get your feed back.

Crazy Knees

I was dx'd with RA by a hand mri in 2010, I was first tried on
plaquenil which I had a reaction to, then did some steroid injections,
then tried a sulfa antibotic, reaction to the antibotic cause me to stop
that medicine, started MTX in July 2011 (injections very low doseage)
and had to stop the MTX for now...if things look good in March
I'll start back on the MTX , However I'll need a saline solution with
the MTX to keep the sjogrens at bay...Anyways, I hope you get many many better days
aheadh of you, keep positive...it will happen again and you'll get your remission,
Many prayers and well wishes on that, from me to you....

Hi Crazy, I just wrote on your other post. I am on humira, it really has helped me combined with the mtx and mobic. When I first went on it I could run again. I have deteriorated since then but it gave me back a lot of life I thought I'd lost. Playing soccer with my kids etc. Now I can ride a bike on the flat and do a lot of hydro therapy, so running now underwater, building my core strength.
If the mtx isn't enough the the biologicals can really make a difference.
I seem to be still deteriorating despite all meds and would love to go into remission. I think you hit the nail on the head, you have to enjoy each good day when it happens.
Best wishes, golitho

 

 

"I give my body permission to go into remission".

LOL!  Me too.  Please soon. :)

Like most RA long-termers, I've been on lots of drugs through the years about 16 or 17, I think.  There have only been 4-5 that have put me in remission for 2-3 years, here and there.  My Family seem to have a type of RA that doesn't respond well to most drugs used for RA unfortunately.  The Docs don't know why.

In early 2005 and prior to, I had enjoyed a few years remission while on Imuran, Indo and Metho.  Early Fall of 2005, I experienced an emotional breakdown because of a death of someone Very Special to me.  One month later, I was hit with a bad case of Shingles and a month later, out of remission.

For the past 5? years, I have been on biologics.  Humira injections which didn't work for me.  Then Enbrel injections which also didn't help much.  I did have a wart on my hand and a RA nodule on my elbow.  Both disappeared which was nice. :) 

Then I was on Orencia infusions which shot my inflammation rate up.

Now I'm on Actemra infusions.  I started in June but I had to stop for July and August because of infections.  I started on Actemra again in September which is like starting all over again.  So it's been 4 months.  Six months is normally when these drugs plateau so then we know if they are working or not.  My inflammation rate did fall to 1 which is something and a bit less pain here and there.  I'm not too impressed so far though because of the chronic pain. 

I've been on Prednisone since I started flaring in 2005 which is the main thing that has helped me which is not good.  I was thinking that I may have something else like Fibro?  My Rheumy suggested Remicade next but they kill the B-cells.    He also mentioned going back on the gold injections which worked before.  I'm Really tired of this cat and mouse game.

Like I said, I'm in the minority concerning the bios not working.  I definitely wish you Good Luck with them Crazy if you need to go there and anyone else, as they do work for most. 

Oh and my Hubby snores sometimes also, so I head for the couch.  I've rock and rolled most of my years with RA so I don't need a buzz saw echoing in my ear.  Glad that you Guys can get some sleep.    

  

Crazy-
Not sure if your post is a wake up call for me. I have been off all meds for a year, in a remission per my doctor- feeling like maybe I never had RA after all even though I lived through a horrific onset. lately it feels like it's creeping back but he says he doesn't see it.
Is it all going to come crashing down like it did for you?
Oh I hope not.

Much success to you in attaining remission once more!

  Yes indeed Golitho, we all deserve a remission this year.   Ugh!   I have a feeling that I’m going to get another diagnosis in 2012.   I won’t complain today though.   After a few hours of annoying pain, I feel Better now.   I’m on so many drugs that I’m not sure which ones are helping.   I’m thinking it’s the depo Medrol injection.   It would be Nice if it was the Actemra.   It could be that the weather is nicer today too.   As far as the run around, that’s just something that we’ve got to do right?   Shucks, you are similar to me then.   I even had an ovary removed but that was when I was younger.   That’s interesting that the Humira stopped working for you after the removal.   I’m happy that the Humira started working for you again, so that you could get off the Pred.   That’s a Plus/Plus.   Good for you and keep it up.   I read something about Remicade that can affect the intestines, I think.   More questions!   Y es and it’s weird what can happen to the human body in the first place.       I want a new body.