How long is too long to be on prednisone?

I have been on 10mg daily for the past seven months and am to continue till at least July when I next see my Rheumy

Who put you on it?

There is no WAY i'd be taking it as a long as you have 10 mg isn't much so basically all you are doing is telling your adrenals I'm gonna slap you every time you try to do something. If any of your meds were going to work they would have by now so its prolly time to try something different. I'm not saying you may not need something for pain control. Have you considered heroin? Its safer.

I assume you are getting blood work pretty often right?? You should at the very least be monitoring your blood sugar and liver enzymes. You have at this point told your adrenals to take some time off. They will stay on vacation until you wean off the predi.

You being a lady and all should also (depending on your age be taking a bisphosphonates (fosamax etc with it. No matter your age calcium and vitamin D supplement.

Keeping you on a low dose predi this long is (my opinion which is free therefore you can gauge the value) is pure laziness on your docs part.

My Rheumy put me on it last October along with 10mg of MTX and 5mg of Folic Acid. Unfortunately I had horrible side effects with the MTX and after a phone conversation with my Rheumy in November it was discontuined. I had blood tests done in October. When I next seen my Rheumy in Jan, she wrote me a script for Humira along with the 10mg of Prednisone, I did the proper blood tests etc and found out in Feb that my insurance declined authorization for Humira because I hadn't been on enough DMARDS. In April my Rheumy called me and during that phone conversation put me on 400mg of Plaguenil, calcium and vitiman D along with the continued 10mg of Prednisone. I am to be on these medications until I see her in July. No bloodwork done since January. I also take 180mg of Tiazac for Diastolic Dysfunction. My family doc takes care of my heart disease but has been honest enough to tell me he don't know enough about PsA to comfortably talk to me about it, and prefers me not to mention it during our visits every three months. I do feel somewhat better than I did back in October, but certainly no where near feeling I have control of this disease or the management of my pain.

Up to 10 mg has been shown to have none of the dreaded side effects prolonged high doses have. A 6mg dose with Enbrel has given me my life back and eliminated the mild flares I had with Enbrel alone.

I'm going to do something I hate to do. You are wrong. there are studies to back it up. In this study over 90% suffered adverse eventS:12 MONTHS

Heres a few more links

A growing number of docs simply won't do it the newer rheumys are hesitant to even do it short term. The stuff is poisen.

There is an old study from 1998 that was so poorly done If my students had done it would have flunked meta analysis is of little value, but the sample in this case was so small, the data couldn't even be tested

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Hi Tnt. Crikey mate, considering the damage that occurs with this disease and, in my case, by mtx, the low possibilty of a small dose of pred causing me damage doesn't worry me. My brother was on a dose of 25mg for 15 years without a problem apart from mild diabetes in the latter years which was controlled. With a good management plan these detrimental possibilities can be watched. I guess, as individuals we each need to educate ourselves and determine what we see as best for us. Many of these small trials are unreliable and cause more damage than the drug by scarying people so they don't try it when it may be the only thing that makes a difference; as in my case. I prefer to rely on a specialist I trust and, as I say, a good management plan. At the moment my life has returned almost to normal. At 66 I am more mobile than I was at 50 with disease then uncontrolled.. Each to their own poison perhaps! Good of you to try to help by doing something you hate doing. ( I am careful; I dont drink Fosters!)

Hi Lovemydogs.

Yep, had psoriasis and the Psa was so bad I lost both knees and the inflammation affected my heart. My feet ankles and spine are badly damaged. The low pred dose has helped Enbrel stay on a consistent level. Without Enbrel I have been told the extent of the inflammation that would hit would possibly kill me as it affects my heart so badly. I tried Humira when my first try at Enbrel resulted in it losing its efficacy but had a bad reaction to something in its solution that hospitalised me. With the co-dose of pred Enbrel this time is continuing its good work. fingers crossed!

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I had forgotten but I was on 25 mg pred for 6 months after the Humira was stopped and before I went back on Enbrel. No problems with it.

I was on it for 8 months (up and down dose, probably averaging 10mg) before I started to wean off it, which took a further 3 months to do (worse than giving up cigarettes - sorry to have to break it to you).

My Rheumy reckoned it was unlikely to have effects at the dose I was taking.

I imagine as with all medicines, everyone’s experience is individual - my experience certainly lined up with the studies lamb mentioned, not with what the Rhuemy suggested.

I now have osteopenia of the spine. I’m 37. By about 6 months, I had started to get mild cushinoid symptoms, high blood pressure etc.

My Rhuemy wouldn’t give me biologics and the conventional DMARDS had little effect - I’ll never take long term steroids for PsA again, but given it got me through the period where I was waiting to get on medication that worked, neither can I look back and say that I shouldn’t have done it.

One thing I can say though, if you can find any way to get that Humira faster - research it. And whatever you do, don’t try to go off those steroids suddenly - you need to do a taper, otherwise you will wonder if you’ve been taking heroin!

And request a bone density measurement of hip and spine - they can usually tell from the pattern of bone loss in the hip compared to the spine if the steroids are causing problems.

I wish you a speedy trip to a biologic or dmard that works for you.

What I'd do at 66 is different than what I'd do at 36 Allan. (except drink Fosters) predi makes a great Bridge drug though. But like say each to their own poisen.

I was embarking on my new part time profession the other day. Entertaining husbands at wifes quilt shop... Its pretty cool I put in a Big screen TV have the entire 24 series on DVD the last 20 years of our college football games. A full fridge. Visiting with a guy who was vehement that the best NSAID of all time was Dicloflonac. Especially when using Aleve in between. He did admit he wasn't familiar with the new stuff. After the liver transplant hes been pretty limited......

Nothing like a mild case of diabetes to ruin a good pie (sour cream raisin)

Off topic:

Genius to have a "guy room" at a quilt shop. Most have a kids table for the kids to play at, but when nonquilting menfolk get dragged along I'll bet they would REALLY enjoy a guy room. lamb, I think your wife's quilt shop is going to have more income soon.... the longer the menfolk aren't hassling their wives to go, the more they shop!

tntlamb said:

I was embarking on my new part time profession the other day. Entertaining husbands at wifes quilt shop... Its pretty cool I put in a Big screen TV have the entire 24 series on DVD the last 20 years of our college football games. A full fridge.

I've been asking questions about this, too, having been on 7.5 mg for awhile, then 5, now 4. It's been a little over a year, total.

My first rheumy considered it necessary to keep me going for the meantime. The plan was, after MTX didn't do it, to find the appropriate biologic, then get off the pred. She closed up shop. Second rheumy, I'm not going back to, initial appointment with a third is still several months off.

My PCP doesn't like my being on it, but knows why it is necessary. I had a long visit with my endocrinologist last week. (Man, I wish that guy was also a rheumatologist. He's fabulous.) He's not too wrecked about the prednisone. Says that 4 mg. shouldn't suppress the adrenals. He does have worries about bone loss, blood pressure (which is up), and blood sugar (OK so far) with continued use, but agrees that I don't have any good answers at the moment.

Even so, I want off it. Rheumy #2 suggested weaning off the pred AND discontinuing the MTX, basically just to see what would happen. Seeing as I seem to be tolerating the MTX pretty well,I refused to discontinue it just for grins and giggles, but did initially agree to taper the pred by 1 mg. per month. Going from 5 mg. to 4 has been a nightmare, and I am not cutting it any further, as I do need to get out of bed and go to work. Just with that small a cut (OK, maybe it was just a coincidence of timing) I have lost the ability to fully open what was my "good" elbow and have developed serious lower back pain.

What I am trying to say is that for me, the benefit outweighs the risk for the moment. I'm hoping to find good rheumatological care next time around, though, and get off the damn stuff. It's the devil's drug. It masks what is going on underneath and it sneakily causes all sorts of potential harm, while telling you that life is just fine.

Louise, I think there should be a ribbon for post of the Day (week) and you get it. You pretty much summed it all up.

I WISH there was an answer.

Thank you everyone for your informative posts. Its obvious my Rheumy is quite comfortable with the length of time and the dosage of prednisone I'm on. I have been reading your posts and taking notes. Also Lamb, I have read the links you provided in your post, very informative and scary. Lovemydogs, I do have psoriasis on the bottoms and sides of both feet which has not gotten any worse or any better with any of the medications I have been on thus far. Allen I am glad you have had no adverse effects from the Prednisone but what sticks with me the most is the last sentence of Louise's post, "It masks what is going on underneath and its sneakily causes all sorts of potential harm, while telling you life is just fine". After reading the material provided and more that I found myself on the effects of long term Prednisone use, I tend to agree fully with Lousie and Lamb. Knowlege is powerful and a necessity when dealing with this disease and I certainly have an arsenol of info to discuss with my Rheumy when I see her in July. I need to advocate for myself when visiting my Rheumy and not just sit on the side lines and let her take pen to script without explaining it too me and to my satisfaction and agreement before I start a new med. Hopefully my insurance company will be satisfied that I haved exhausted the DMARDS and will approve Humira for me in July,,, keep your fingers crossed. I will continue this course of prednisone until I see my Rheumy in July and based on the info that I have read will inform her that I want to start the tapering process immediately at that point. Again, thank you to all who offered their valuable opinions to me, much appreciated

Spot on, Louise.

From early serious onset of PsA in my 40's I decided the problem drugs . pred, mtx whatever, which can be watched and managed, are a far better option than living disabled by pain and depression. For me, taking this attitude has meant I am able to exercise again and this has resulted in my sugar levels dropping, BP normal, increased my bone density and no more depression. Good management and regular tests mean the effects do not have to masked and remove any fear I may have.

My older brother also took this line. He had sarcoidosis and, although it killed him eventually, the nasty drugs gave him an extended period of quality life and the abilty to continue to work his small farm for longer than the docs thought he would. I reckon,TNT, that giving up the pie (and chocolate) is a small price to pay to miss the full onset of these diseases. My MiL has Lupus, feared to try the drugs to manage it and has double vision, high blood sugars and heart and other problems attributable to Lupus and her quality of life for the last 10 years has been miserable.

I would not tell anyone my approach is best for them but then, thats what this great forum is about, to share experience to assist others decide their own approach to attacking their PsA.

Good luck on your journey, Easternlady, and I hope our combined experiences have helped you.

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Thank you for your post Allan, first my condolences on the loss of your brother and my thoughts and prayers go out to your Mother in law for all she has to endure with lupus. My mind is new to the diagnosis of PsA but my body has suffered with it for over 14 years undiagonsed and has significant damage to many joints, tendons and my heart because of it. I am glad I posted my question on this forum because it afforded me a much broader knowledge of the pros and cons of prednisone. I am learning there is no quick fix or a single answer to anything related to PsA but its a trial and error. I have alot of information to take to my Rheumy and together we will decide what is best for me. Take care of yourself and thank you again for your post

Far better to make informed decisions and search out the facts as tntlamb has suggested. I do not completely rely on my doctors recommendations without first finding out as much information as I can. Not many doctors like their treatments challenged but a good doctor and with a respectful approach will discuss your treatment and will work with you and leave the final decision up to you.

How true. Education, knowledge and using that knowledge to support us in being assertive in our dealings with our medicos is an essential ingredient in progressing. However my experience has shown me that knowledge can also be dangerous unless we check and critically anyalyse that knowledge and are able to look at it with a greater amount of logic than emotion.

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Well, I haven't continued to cut down. I was supposed to go down by 1 mg. per month, but quit tapering after going from 5 to 4 two months ago. The negatives were a fairly immediate increase in swelling and pain, followed by a reduction in range of motion, and then involvement of new joints. I'm not willing to put up with the definite drawbacks to tapering right now.

If Orencia makes a difference for you, I would hope you could taper off without too much trouble. Lamb posted the link to many comments on the RAWarrior site about people's love/hate relationship with prednisone. It's interesting reading. My PCP recently told me, when I asked her if 5 mg. was just a sissy, girly dose, that she has patients on as little as 1 mg., and that 5 can be problematic over time. Thank heavens the days of putting people on 60 to 80 mg. a day are gone!

Lucky for me, my first rheumy had this psychotic electronic medical records program that spat out random prescriptions to all sorts of pharmacies, whether I needed them or not. I've been able to round up the amount of 5 mg. tablets to last until I see the 3rd doc in August (along with enough MTX, folic acid, and leucovorin, too.) My PCP and endocrinologist are helping with ordering labs, seeing as the 2nd no-good, very bad, horrible rheumy didn't give me lab slips, hasn't responded to refill requests from the pharmacy after promising he would, etc.

Several posters have talked about having to be your own doctor to some extent. Sad but true. My first rheumy actually encouraged this: she suggested reading all I could find about both MTX and Humira before I started them. I love that.

Thanks, Lamb and Allan, for your kind remarks concerning my earlier post on this thread.