Still have PMR...now RA added on (maybe) ...wanting to know why long term, low dose prednisone as monotherapy is an issue.

FYI...I also put this same post on the PMR community and am interested in hearing from all of you good people!

So I'm at 10 mg now. Going to see my 5th rheumatologist in 1.5 years. Going to ask him if I can just do pred for PMR and my "maybe" RA. Slowly taper and get down to 5 mg or less if possible. I have never tried anything else yet...MTX or biologics, etc. I've had all of these other docs pushing me to add on MTX and the others. Chickened out every time I got close to trying. I have read here and on other sites and on medical sites, and on and on and on, so many people go though so much with these other drugs. The demon prednisone stopped being the favorite when the patent ran out and the drug companies stopped making money on it. I know MTX has been pretty good for people with RA in particular. All of these drugs cause nausea though, and I cannot do nausea. Cannot tolerate it and cannot function with it. An I also can't do PPIs to help with nausea. It's been shown time and again that most of the really bad side effects associated with prednisone are from doses much higher than 10 mg...and generally much higher than that. It doesn't mean prednisone is "safe"...only that the particular set of side effects associated with it at low dose....even long term....seem to me to be no worse (and just as treatable) as some of the side effects of all of these other drugs....drugs which frequently don't work, or take months to work, or stop working after a couple of years. OK enough of this rant. Feedback welcome and please feel free to blast me if you want. I know I am swimming against the tide here. Good article supporting what I am saying: onlinelibrary.wiley.com/doi...

[Strayleaves]

Hi there

Good on you for questioning what the drs are giving you , we all should do that . I did not want to go on the mtx at all. Eventually I did ....I do not get any nausea.mtx is a mainstay treatment for RA. I will be doing everything however to not go on steroids ...everyone makes their own choices , hopefully..

Take care

[AgedCrone]

If you have been diagnosed with RA ....depending on type &'severity....you risk joint damage if you just take Prednisolone.

Mtx is a very longstanding Dmard,& although some people have problems with it, it's well worth having a talk with a rheumy nurse to get the full picture.

I was diagnosed 18 years ago....took Dmards very early & i have no significant joint damage....but I had to understand the position before I embarked on taking the meds.

I did take Pred.....for about a week& it sent me loopy....so never again!

Good luck. ...hope you get some helpful advice from the medics.

[helixhelix]

Many of these things are a personal choice both as to how you weigh up risks and benefits, and also how you as an individual react physically to different drugs.

I won't touch oral prednisone ever, ever again unless I'm completely desperate. For me they are the devil's tic tacs because of the effects they have on my emotions (not something even mentioned in passing in the article you referred to). Even at very low doses. Let alone how they might impact on any other emergency treatment I might ever need, or affect my skin as I get older. My current rheumy would be happy to prescribe a low dose for me as an adjunct but I refuse completely.

However, methotrexate is my best friend. It has given me my life back over past 6 years and I now have no side effects at all. The first 2 months were a little hard, but that's it. There's quite a lot of research now about the nocebo effect - the reverse of the placebo effect which is quite well known. Your mind is a very powerful thing, so basically if you are convinced that you will feel nauseous on Methotrexate then you increase the likelihood that you will. My RA was so awful when first diagnosed, and my life so painfully miserable, that I was delighted to finally get a prescription for MTX. And so happy to find out that there were effective treatments for RA rather than looking forward to a life of pain and deformity. So I was very positive about starting them - a little scared too, but willing to try. After all I knew I could always stop taking them if they didn't work (unlike the devil's tic tacs) .

It's a choice, nobody can force you to take a drug you don't want, and you need to work out what's right for you.

[dhall54]

I was (mis?)diagnosed with PMR before being finally diagnosed with spondyloarhropathy after nearly three years. I was on prednisolone for 2.5 years so I know how well it works - and how it can mask other symptoms. I now have osteoporosis - probably because of the steroids and I was on under 10 mg for 1.5 years. It made me feel so much better that I really didn't particularly want to give it up....

But when I saw a new consultant who changed my diagnosis I was happy to try methotrexate and though I felt mildly nauseous I think it probably helped put me in remission. I only took it for a year and am now only taking the occasional Naproxen as and when needed.

It seems to me that you need a definitive diagnosis before you can commit to a new treatment. Have you had any Xrays or MRIs - or are they telling you they can't do that while prednisolone is masking the inflammation?

[Hidden]

Welcome.

I note that is an old article. The studies they referred to are even older. Rheumatoid medication has moved on a long way, even in the last 5 years and will continue to do so as the patents for biological DMARDs end.

As Helix also referred to, that article barely touched on the actual full side effect profile of prednisolone, even at lower doses. If was going to do a side by side comparison of a drug or treatment, I'd want the absolute full information for both.

My other concern is that we know low dose prednisolone does not prevent the following; cardiovascular disease and joint erosion. I chose to weigh up the pros and cons and found that the amount of joint damage I had outweighed any potential side effects. I think, when choosing a medication, you need to be aware that it's always potential and never given.

Taking medication - any medication - is a very personal choice but I'm afraid, that article does not hold much weight for me because there was less access to many good RA drugs back then.

I am pro patient choice all the way but I also think we need to led by current research and by our doctors because they know us clinically and each person's clinical picture is different.

Best of luck.

[nomoreheels]

I've been on low dose steroids for nearly 5 years. Just my opinion having been there but it's not the most appropriate way of medicating as you can still suffer lack of bone density even on low doses & they don't treat the disease or co-morbidities only the inflammation. If a DEXA scan shows any damage then the normal way to deal with it is with bisphosphonates, read up on them & see what you think, could you take them? I generally cope well with meds & give them a really good go before admitting failure & have tolerated MTX, HCQ & LEF, there's only been SSZ & bisphosphonates that have beaten me. I'm borderline for osteoporosis & so far been able to stay in the osteopenic range with Ad-Cal D3 & diet but for how long is anybody's guess.

I started treatment, in another country, on short course of low dose steroids, HCQ & 2 NSAIDs, they brought the disease under control quickly, but the steroids were stopped once I'd finished the course. Recent findings are suggesting the same is to be done here in the UK, a short course of steroid & a DMARD, plus an NSAID, so maybe this could be a compromise? Discuss your options with your Rheumy, he's the best one to share his knowledge & opinions really.

I'm due to start tapering my steroids soon though I've had to change from deflazacort to prednisolone in order to do a safe lengthy taper. I really would choose not to go back on them once I have stopped them. I don't expect to have an easy time.

If your have a fear of nausea have you considered asking your GP for an antiemetic? When I was really struggling with SSZ one of the issues was nausea & whilst I was prescribed one which eased the problem another side effect floored me so that was the end of that but at least in enabled me to try & deal with it once the nausea eased.

Please do think long & hard about steroids & the long term effects of them, they really aren't the solution, not when there are meds designed specifically for the disease. There's no guarantee you'll have nausea on any of them but it's odds on you'll risk fractures on long term steroids, even bisphosphonates aren't guaranteed to help, if you can cope with the side effects of those, for many they're not easy to take. Talk to your Rheumy about your concerns, hopefully you have one who understands & will talk through your options with you. Good luck.

[Hidden]

Thank you all so much for your comments!! I so appreciate you taking the time to write and offer such great insights. I will review and reread your comments and talk at length with my rheumatologist in order to make the best decision possible moving forward. Thanks all again so much!! Diane