Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Taking Steroids

I am seriously thinking about taking steroids. I have taken them years ago and was the healthiest I have ever been. Lately I have lost so much strength, mainly in my legs, but generally all over. I feel weak and struggle doing simple tasks.

I am currently taking Enbrel Anti-TNF 50mg inections weekly and was wondering if this medication would interact in a bad way with steroids. I know there is a stigma about steroids but arent all drugs bad for you, even prescribed ones, they all have side effects.

I was thinking of taking Winstrol (Stanozolol) which I have takien in the past. Could anyone give me any advice please? Please do not say dont take steroids though if you do not know about them and are just thinking they are bad because of what you have seen on TV or the newspapers.

Many thanks

Joe

I can't give you advice, because everyone reacts differently & some are successfully on steroids for years, but I can tell you my experience. It was similar to yours in that the first time around it was the best I ever felt. I was able to do life like never before. I went back to them the second time for that reason, but the second time around wasn't as good in my case.

Firstly, I didn't feel quite as good on them & had more emotional upheaval. Secondly, at the time, I was having problems with spontaneous tearing of ligaments & tendons, especially in my ankles/feet, and my PT told me the steroids were interfering with my ability to heal. So I decided to go off steroids again to give me a chance to heal enough to walk again, and that's when the real trouble started. I had such a horrible reaction when I tapered off, even though I did it very, very slowly. I wasn't myself...it's hard to even describe. I've never done drugs, but perhaps it was like a bad drug trip? Nervous & anxious & irritable & sweats & trouble sleeping & more. It took a couple months & I decided if I ever got through it, I'd never do steroids again as long as I lived. But I can sure relate to the desire to use them again because they make life possible in ways it's not without them.

FYI- for a point of reference, the first time I was on them for about 4 mos & the 2nd time for about 3+ mos before the taper, so neither time was real long term, although it's my understanding anything longer than a week requires careful taper to go off.

Hi, Joe:

I do not believe that steroids would interact in any negative way with the Enbrel.

My advice: DON'T DO IT!!!!

If the Enbrel is not working well enough, it is time for other real therapies; steroids are wonderful drugs that can help us over very acute issues, but You are talking about long-term! The side effects of these drugs are MYRIAD, and some are permanent, so I would not even consider steroids for the application You have suggested.

AS is also a muscle-wasting disease, so it would be far better to do some weight training and consult with the muscle-heads about amino acids. I have done this with great results.

And I have taken steroids, orally, had many injections for pain management and surgery, and even injected them into my feet for severe gout: I believe they have contributed to my "metabolic (X) syndrome," and I have accrued fat, gout, and borderline diabetes. Now day8 of fast to get back to some level of normalcy, I hope...

The most obvious thing is the diet and I have known other people who have been successful combining their own level of diet along with the tnf-a drugs; they have required less drug at times, so never developed an immunity to the beneficial action of their injections. Enbrel is a great drug, but it does not address the root-cause of AS.

HEALTH,
John

Thank you for the replies, what does MYRAID mean, also when you say muscle heads, is there a name for a type of specialist I should look at.

I am thinking of doing weight training for 4 weeks, and then 6 weeks of Winstol, and then 4 Weeks training without them solid, then just carry on training like 2 or 3 times a week indefinately.

I am hoping to use them to give me a burst of strength, and then when I come off them just maintain the strength.

Joe

Hi

I took steroids for 18 months straight because they thought I also had polymyositis and A/S because I developed very weak muscles. I now am diabetic from them and had cataracts in both eyes. I forgot about the weight gain and the stretch mark. I had terrible insomnia with them, cried every day, and ate everything in sight. Don't take them ! I wish I had never taken them. My muscles became weaker from the long term use and I was never the same. If the Enbrel isn't working, try another . As John suggested also try diet and I remind myself daily this is a chronic disease and steroids are a quick fix, that never solves anything long-term. Save them for an emergency .

Janet

Before humira, i took methylpred for flares.

but needed them too frequently so started humira.

a few months after starting humira, i went into my annual late summer flare and took methylpred again, for 10 days.

no interactions between biologic and steroids, for me the results were additive.

haven't needed the methylpred for over a year now, but if I did, I'd take it again in a second.

steroids are a powerful "drug" so i treat them with respect. yes, they can do damage, but so can inflammation. so if i need them, i take them, but have only ever taken them from 6-10 days at a time, not long term, thankfully i never needed to do that.

good news for me is that for now, humira seems to do a pretty good job. yes, flares, but not so bad that i need the methylpred...for now.

just wish i had a doctor early on who prescribed the steroids or biologics so i didn't have so much damage from all those years of untreated inflammation.

i'd say, talk with your doctor and then do whatever you need to do.

i found nipping a flare in the bud early on meant i could take the steroids for just a few days to turn the flare around.

i will also say that for me, changing from every 14 to every 10 days for humira has helped me a lot.

if your enbrel is helping, but not enough, wonder if tweaking it or trying another biologic is the answer?

PS and for me, i always felt wonderful on the steroids, just like i do on the humira. only short term side effect i had was hot red face / flushing and my A1c went up a bit (6.5 vs the usual 5.8 after taking them 10 days). but too, i'm sure they weren't good for my bones, so glad its been a year since i needed them.

I believe you are talking about taking an anabolic steroid - commonly misused in weight training, not a Corticosteroid as most posters are assuming. The risks of anabolic steroids are enormous - from stroke, to shrinking of testicles, to low sperm count, to uncontrolled rage issues, to liver issues and cancer. It does not seem worth the risk to me to bother. Instead, working with a good physical therapist or trainer would seem like a better way to increase your strength and muscle tone. I don't know that there has been a study of use of anabolic steroids with anti-TNF drugs as there are few legitimate medical uses of these drugs that would correspond with the need for anti-TNFs.

Joe- I have been on daily Prednisone for over 10 years. I stay under 5 mg daily and only take higher doses for severe flare ups, once or twice a year. I am also on a biologic. I don't get the weight gain like most people do on steroids and my docs check my bones from time to time with a bone scan and urinalysis. I do have osteopenia but not full blown osteoporosis. I think steroids definitely have more risks than other meds but it is the risk I am willing to take to be more comfortable and function better. I can't take NSAIDs due to reflux and I don't tolerate the DMARDs well so this is another reason why I am on steroids. I have never heard of Winstrol. I would talk to your Rheumy about trying a steroid and go from there. Hope you feel better soon.

Shari

Good catch!

Yes, I was wrongly assuming corticosteroids like methylprednisone or prednisone. I should have googled the drug name that the OP listed.