Steroid experiences?

[Paula]

I am starting Enbrel injections next week, but my doctor has also prescribed a low-dosage steroid (because Enbrel can take months to be effective). Does anyone have experience with taking steriods for RA pain/stiffness? I have to say I am a little wary of the "weight gain" side effect. :o

[star73]

hey paula! I just asked you about steroids in PM! lol! Yes...steroids caused me to gain weight but my doc had me on them for months straight. A short course may not add too much....but just try to be careful cause you will want to eat everything! Or at least I did LOL! I love how the steroids help my pain and stiffness. Its a love/hate relationship I have with them ;)

[Paula]

Thanks, star73! I am still debating...I am right where I want to be on weight! I have been googling to see if the weight gain is inevitable, or if is it due to hunger/eating more. This will sound very superficial, but that is not the first side effect a woman wants to read about! :p

[star73]

I know how you feel! Maybe if you ask your doc for a short term steroid pack then that could help you out for now without the weight gain? I know the first couple of times I took a steroid pack I actually lost weight cause they made me not wanna eat. However, when I started on a daily low dose of prednisone.....after a couple of months the weight packed on. You will be amazed at how good you feel on the steroids and how much you can get accomplished and how you are able to use your hands better. They have 5 day packs and 7 day packs. That is just something to think about ;)

[Sprucetree]

I am bumping this thread to warn you about the seriouse side effects of prednisone.

I don't think the 5 or 7 packs are as serious as constant use is. From around 1999 to about 2005 I was on a low dose of prednisone. I think I was at about 5 mg per day. One of the things I noticed was that the smallest cut, like a paper cut, would bleed for several days.

But the worst side effect I had was blindness (Central Serous Retinopathy) in one eye. It was from stress in addition to prednisone. The blindness went away when I got completely off prednisone.

Fast forward to now, 2011. In 2010 I had a recurrence of RA. I was going through a divorce and under a great deal of stress. I was put on methotrexate and low dose prednisone. Again - I went blind. This time in the other eye. Again, I had to wean off prednisone. Once I was off the prednisone my sight came back.

I just want to warn everyone about how bad prednisone can be. If you have no stress in your life, good for you. But if you have a great deal of stress combined with prednisone use, this could happen to you as it did to me.

[lglavish]

I'm on 3mg prednisone daily. If I could get off it I would but when my RA became controlled in August of 2010 I started to wean off and couldn't. I get severe cramps in my legs, my cortisol levels drop too low and my aldolase levels go up. Although it is rare, permanent physical dependency can happen even after short term use, it did for me.

At the same time I can tell you that without it I would have been in a world of pain and wheelchair bound. It is very valuable for short term releif. It's a very serious drug though and does come with a long list of possible side effects.

If I had to go back in time, even knowing that I would be stuck on it forever, I would still have used it. At the time it was the only thing that gave releif.

[Sprucetree]

I know how you feel. Prednisone not only helped with the RA, but it cleared up the fluid in my lungs. As soon as I weaned off prednisone, the fluid would return. That continued for a year or so until I just stayed on prednisone. I was on it from about 1999 to 2004, when I went blind in the left eye. That's when I made up my mind to tough it out and get off it completely, which I did until 2010 when the RA returned. I got off it again in 2011 when the right eye went blind.

It's frustrating. I just wish I could go back in remission.

[toughchick]

I've been on and off it for like 6 or 7 yrs. My biggest problem was the mood swings, I would get really mean. I have been on it now for about a year and a half straight. This is not the first time I've gained weight from it. I usually drop it right back off when I stop them. Really what you need to aks yourself is do I want to gain weight and feel better or do I want to suffer for awhile?

[Sprucetree]

I wish mood swings and weight gain was the only problem I had with prednisone. I recently had a flare and was offered prednisone. I came close to caving in and just taking my chances with it, but durn! I hated being blind!

Even though my sight is now back in both eyes, my right eye, which was the latest one to be blind, is not as good as it was in the past.

Oh, another side effect, which also happened to me, was cataracts. Prednisone is known for causing cataracts. I had surgery in both eyes for cataracts, so that is ok now.

Just be very careful with prednisone. Doctors prescribe it for so many things. I don't know for a fact, but it seems that short-term use is ok. It's long term that seems to cause the most problems, even in low doses.