going off of prednisone

[Giovanna1]

Hello - I was wondering of anyone has experienced this. I have been on prednisone for about 10 months due to rheumatoid arthritis. I have been weaning myself off, and now have stopped taking it completely. I feel lousy! I don't know anyone who has been on it this long, and if this is normal, so I thought I would check on here.

Has anyone ever been through this? I am nervous and somewhat worried that I'm not feeling well because of the possible side effects of other drugs I am taking (i.e. methotrexate) which can cause liver failure, etc.

Go to a doctor you say? Way too easy! Besides, I am sick of doctors, and, okay I admit it, sometimes I have avoidance issues. So, I am hoping that someone will come on here and say - yes! going off prednisone can make you feel like c**p!

Basically, stomach pains, headaches, no appetite (I like that part a lot!)...

Thank you!

Giovanna1, what a weird coincidence - I was interviewing a rheumatologist about steroids this morning, and one of the issues which crept up was that of withdrawal and how many patients feel like you do about taking such drugs long-term. Having listened to what he said, I would be very cautious about coming up such drugs without medical supervision - they can help to explain some of the side effects and longer-term issues associated with the choice you've made. do you not get on with your doctor? maybe you could ask to see someone else if it's down to a personality clash. I'd hate something like that to put your health at risk.

Bundle, You just beat me to the same advice. I've looked the drug up, and it looks as if coming off it too soon could give rise to problems. If you don'r have a good relationship with your gp, how about having a chat with your local pharmacist? I wouldn't want to leave this one to chance

You do need to be careful coming off that sort of drug. It took me a long long time to wean DS1 off 0.1% hydrocortisone and propaderm (both steroids- prednisone is going to be stronger). I had to go down to every other day then every third day etc ect before his skin could cope. The consultant etc had told me to wean him, but hadn't explained how gradual that process had to be (I did it very very slowly).

i think too the skin preparations of steroids are much lower-strength and have far fewer side effects than oral steroids or injections, so can't be too careful. the amount of ingested steroids your body is used to actually stops your body making your own naturally-occuring corticosteroids - to respond to stressful events, accidents etc - so can be catastrophic.

I actually do have a good relationship with her - and she gave me the go ahead to wean myself off. I have put a call into her, but we keep missing each other.

And I hate to make an appointment - my health insurance is horrible, very expensive - between dd's well-child visits and all of my stuff, I am spending more on a monthly basis now then what I previously spent all year.

I would love to see some of the information you both refer to. Bundle, what are some of the things the rheumatologist said? And HMB, could you tell me where you found some of the info?

Bundle, I am curious about your interview! I have been toying with the idea of writing an article on women and RA, and possibly autoimmune diseases in general. I have spoken with my doc. about it, and she is very supportive of it. I do like her quite a bit, as I wanted to move very aggressively in treatment, and she has allowed me to do so (I was getting to the point I couldn't walk, change a diaper, etc. - if it wasn't for dd, I may have moved a bit slower on treatment, and experimented more).

Thank you for your feedback! I am happy to hear that going off can cause "uncomfortableness" - I now fear that every ache and pain I have is going to be diagnosed as some nasty disease!

I guess I was posting while you were posting - I have been down to every other day for awhile. And even less, as I keep forgeting to take them! Hopefully I have done it slow enough. I should really do more research on this.

giovanna1, I'd have to go back over my notes because we talked for about 20 mins! it was fascinating, he did mention the 'every other day' dose - and why that wasn't a good idea....but obviously all those thoughts have flown away with my pea-brain/brian!
I'm working on something about steroids in general - so RA, asthma, skin problems - how it's administered, what the side effects are etc. also other conditions where it's used like rare forms of anaemia and some cancers, plus a bit of the history of how they were discovered to be naturally occuring in the body, what we understand about their actions.
I think his central message was that these drugs/withdrawing from them don't just cause unpleasant symptoms but need to be monitored closely in case something more sinister is going on. he said he'd rather take them himself (or advise someone in his family to) than seriously risk his health. because your doc is so nice, I'd persist and try not to worry about the cost, (as L'oreal say) cos you're worth it!

I looked it up in the Compendium of data sheets produced by the Pharmaceutical industry. There should be a copy in your local library. That said, most of the information present in the data sheet is now present in the patient information leaflet, but it is in 'plain english' rather than medical speak! And a warning about the data sheets, they list everything that could happen even if the odds are millions to one, and you have to take into account the risk of leaving your RA untreated. Discussing the relative risk is something that it might be best to do with your gp, as they can put things into context. From your use of the word daiper, are you in the US? If so look it up in the Physicians Desk Reference, I think they are help in public libraries
, that gives all the info help in a europian data sheet

Thank you thank you! Yes HMB, U.S. (diaper, crib, mom, pacifier, etc!).

I will look more into it...