I am an I-DOT (and pred question) | Arthritis Information

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That's what well call it around our kids.  Not an idiot, but an i-dot (eye-dot).

 
Anyway.  I was all excited that being on pred (even though it's only a 6 day pack) would make it so I'd have some ROM in my wrist.  Even though RD said no, this is just for your shoulder and elbow, it won't help your wrist.  Well there are three ways I can't move my wrist entirely.  Two of them aren't better.  One of them was better, this morning, a little bit (although no where near to the other hand).  So I took it upon myself to stare at it and show my husband. And now, even though I'm on pred and the swelling is down a bit in my wrist/hand, a new and different part of my hand is aching and throbbing because I was able to bend it that far but had no business doing so.
 
My shoulder and elbow are a bit better.  I just have to be sure not to overdo.  I can't act like I can do more, because if I do, I will so pay for it next week.
 
So my question is this...if pred kills the inflammation (although I'd need a lot more than this to kill mine, but just pretend it was all gone)--why doesn't it stop the progression of the disease?  What is still happening without the inflammation that damages things?  Does it just get rid of the response to the disease activity?  But I thought the disease was over active immune system, and doesn't pred suppress that?  Just curious.
 
BTW, pred makes my stomach upset.  I am very sad because the thought of a sugar sandwich makes me sick right now, which is not like me.  I feel very bloated and no appetite...
In Illinois, IDOT is the Illinois Department of Transportation.  In other words, it means the same as your definition I want to say that at one point...pred was hailed as a cure for the disease/inflammation.  Over time though, the side effects made that impossible.  The amount of pred needed causes severe effects.  Now we use smaller dosages for the relief but the DMARDS to control the disease process itself.I am right there with you, Katie! My elbows usually have so much swelling my arms just look fat and cannot even see bone and they are stuck in a bent up position.
 
Well... yesterday while we were in wal-mart, I was walking around and I straightened my left arm, which is the one I broke that has screws & a rod, and something popped and all of a sudden I had lots of pain. It felt like something (tendon or muscle) was being pinched between the 2 bones. But the weird part is, if I pressed where it was hurting it would not hurt and I could freely bend & straighten my arm again, but if I let pressure off where I was pressing it would hurt again from the weight of my arm.
 
I eventually got it to go back to not doing it, by rubbing the area. Which was painful! But better than the way it was for about 15mins, until I worked out the "kink".
 
I have no idea about your pred questions. Hope you feel better soon.
KatieG,
 
Your wrist story reminds me of a story of my own. I had quite a bit of pain in my right knee and doctors kept saying that it was ra pain even tho to me the pain was different and so much more extreme. I picked up a lung infection and so was put on 60 mgs of prednisone. Gosh, I was brand knew. I was practically running on my legs and looking like I was not ra stricken. Welllllllllllllllllllllll, after the pred wean back to 12 mgs, my right knee swelled up to the point that I copuldn't get my pants on and I couldn't use my right leg at all, even to lay down was painful (extremely). I went to urgent care and they sent me over to emergency to have the er doctors drain the fluid around my knee. The first big needle brought out no fluid so they got a larger needle and with two other doctors pushing the swollen part of my knee toward the needle, still no fluid. The er doctor said that he wanted to try an even larger needle. I told him no that I was going home and if it got worse they could cut it off. He then put the needle under my knee cap and pulled out some synovial fluid for sample and testing. Come to find out, I had torn my cartlidge in 2 places and the running on it had caused all of the swelling. Anyway, pred will slow progression as does all the drugs that eliminate inflammation. One more thing, they used to pump prednisone into the joint of a lame race horse so he could still run the race. Hope your feeling better.
 
LEV

Lev! Any one of us would be BRAND Spankin' NEW with 60mg of pred, to bad we cannot go that route. 

 

I told my rheumy that every six months he should give all the "good" ra patients a 60 mgs pred pac to reward them for being good. He and the intern had a good laugh. I sure felt brand new.
 
LEV
 
I went from being a complete invalid for the past month to standing right up and walking alone OVERNIGHT when given 40 mgs of prednisone! [QUOTE=wanttobeRAfree]I went from being a complete invalid for the past month to standing right up and walking alone OVERNIGHT when given 40 mgs of prednisone![/QUOTE]

Yea, the first time I did a medrol dosepak I went from bedridden to unstoppable in 24 hours.  It felt so weird - I thought perhaps I had lost my mind and I hadn't really been in such pain.  It brought more relief than a bucket of vicodin and a case of beer.  Of course, I was thrust back into reality a few weeks later when it wore off and I was right back to square one.
Yep, I like those days like I am having this last week. Makes me feel less depressed and like I am living and worth just a little more and not so useless. Makes my mood and attitude a little better, too. I need a little "pick me up" every so often, and well this is it!
 
Will miss it when it is gone, if I do not get my rapid pulse fixed up for me to get back on Remicade this coming month.
 
Reaping the "rewards" of pred... good and bad at this point.
 
wanttobe, the info about starting a high dose upon dx sounds like what your dr did? 
 
A recent systematic review of studies looking at prednisone and its usefulness in rheumatoid arthritis was performed by researchers for the Cochrane Database of Systematic Reviews. Fifteen studies which looked chiefly at disease duration of two years or less were included in the analysis; all studies showed a treatment benefit with prednisone or drugs similar to prednisone, and these benefits were generally achieved when combined with other disease modifying drugs such as methotrexate. The authors of the review concluded that the evidence was very strong that a drug such as prednisone given along with a drug such as methotrexate can significantly reduce the joint/bone destruction seen in rheumatoid arthritis.

This review of studies also suggested that patients who have had rheumatoid arthritis for less than two years appear to have less chance of joint destruction if their doctors begin them on prednisone at the time of their diagnosis, even if the prednisone is eventually tapered down significantly.

Unfortunately, there was not enough data to be able to conclude whether or not patients who have had rheumatoid arthritis for several years would also benefit from the use of prednisone, as was shown for those who have had rheumatoid arthritis for two years or less.

Interestingly, the question naturally arises, would the consistent early use of prednisone in addition to the more traditional disease modifying drugs (such as methotrexate) be just as beneficial—and with the same or less risk—as the newer and much more expensive drugs such as Humira, Remicade, Enbrel, Rituxan, and Orencia? Only head-to-head studies can answer this question. Whether we will see such studies remains a whole other ball game
Katie-
 
Actually it was my 2nd RD who put me on the high dose of prednisone. I was dx'd in Nov. 07 and had a very severe onset. At the time I saw my 2nd RD I was on 20 mgs. of prednisone and 15 mgs. of MTX.  In Jan. 08 I could barely shuffle into his office with the assistance of my husband. I was unable to feed myself or take care of ANY of my basic needs. I was in so much pain and because it had gone on for so long with no relief or improvement- I wanted to die.
He jacked up my prednisone to 40 mgs. breaking it out between 30 mgs. in the AM and 10 mgs. in the PM. He told me it was a very high dose but in Europe they sometimes go to 60 mgs to break the cycle and reset your system.
Katie- no lie- the very next morning I was a new woman! I stood right up by myself and walked unassisted. The pain level was reduced to like a 5 overnight! As the days progressed I got better and better. I went back to work full time and PT on 1/28/08 .  I have not missed a day of work since. I have now tapered to just 4 mgs of pred per day and  I am still tapering.
When I was first diagnosed , the only thing that helped at all was prednisone in large quantities. If the dose got below 30 mg, the pain came right back. So for an extended period of time (few months) they let me stay at that dose. Toward the end of me taking it, I realized how I couldn't sit still and I was always cleaning and more iritable than usual. I thought the irritability was from hurting but when I sat down and thought about it i realized I was manic. Had to taper off of it. On Friday, I went to the hospital and had a block done on my back. I have no idea how much steroid they used but when I got to work yesterday my face looked like I'd been in the sun without any sunscreen for about 5 days. Red hot wouldn't even begin to describe it. People kept asking me if I was OK. Yeah, I'm fine other than having a lumpy red face.
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