I have had PMR for 3+ years, started @15m for one week, then 10m, then trying to continue the tapering. I did not know about the DSNS method of tapering for the first year. Since then I have tapered as low as 7m (briefly!).
stress, over-activity, have causes quite a few flares.
Question: is this normal to be so long into this and still be at 8m?
I feel "better" than I did a year ago, but the amount of prednisone had not really decreased.
It took me about 4 years to get to much under 10mg, I got stuck at 9mg. After a massive flare nearly 5 years ago I did get down to 5mg, 4mg briefly, but had another flare. Now I have just got back to 6mg.
I also have myofascial pain syndrome - and I'm fairly sure it is that that stops me getting below any given dose I get stuck at. Sort that out and I am able to reduce another mg or two.
It all depends on the current activity of the underlying autoimmune disorder - you need what you need to manage that. Force it, you have a flare and go higher to manage it which adds to the time it takes to get back where you were. Using the DSNS approach those flares are much less likely - but far more to the point, you don't go back to such a high dose time and again.
But a good half of patients need pred for up to 4 to 6 years. Being at 8mg after 3 years doesn't seem too bad. There are a lot of factors at play - maybe you are someone who is only absorbing 50% of the pred you take? You can't be compared with the patient who absorbs 90%. Both of you may NEED the effect of 4mg - you would have to take 8mg, they get away with taking about 5mg.
IWAS ON PRED 10MG. FOR 2YRS. TAPERED DOWN TO 8 THEN 5 THEN 1MG EVERY MO. TILL NO MORE. I FEEL FINE NOW 1 YEAR LATER. PRED IS NOT GOOD FOR YOU ON A LONG HAUL. TRY AND DO AWAY WITH IT FOR GOOD
It worked for you - but men often experience PMR and pred in a totally different way from women.
But what NEVER ceases to amaze me is how the proponents of "doing away with pred" assume those of us who take it are doing so for fun, for no good reason other than just taking it. It doesn't matter whether it is the medically qualiifed or the patient who is no longer on pred and somehow thinks they have done better.
Walk in MY shoes and then YOU may tell ME I shouldn't be taking pred. Or anyone else taking pred on the forum if it comes to that.
Hi Kathy,
I understand only too well where you are coming from. I got down to 7.5 was congratulating myself ,then whoops,a flare! I had been tapering had to go back to 10mg (that was when I was last good) I stabilised at that for a fortnight,then cut down to 9mg where I was good too. Now at 8mg and not so good,so am going to go back to 9mg for a bit. I saw my Rhuematologist last week. He is a young man and very good.
He told me when tapering to after a flare stay on the last dose I was good at for 6weeks,then drop by only a half mg for another 6weeks. He said the slow method is best for quality of life. He also said that too many patients try to reduce too quickly as they hate being on the drug .
So different from my first rheumatologist who anther me off pred altogether within 6months! Eileen's advice nod experience as usual is spot on and I really want to try the dsns method but haven't got there yet,
I understand that we are all different and what suits one will not suit another,so it's trial and error,but without the pred we would all be in a sorry state even though we don't like being on it
Barbara
Oh hallelujah!!!!! Where is this joy of a rheumy?
Airdrie, Scotland ,Eileen.
Barbara
Monklands then I assume? Do you belong to PMRGCA SCotland?
Walter: I have had PMR for only 2 months and my Rheumy has
me tapering to 10 next month. What was your taper like to
where you are now and did you use DSNS tapering?
Paul
What is DSNS method. I got PMR 2 weeks ago. Have had to go to 60 to get control. So how do I approach the future options intelligently?
if you really needed 60mg to get control of your symptoms then I would suggest it is possible you may not have PMR. PMR is characteristic in responding to moderate doses of pred, up to about 25mg. Giant cell arteritis may require more. But there are forms of inflammmatory arthritis that can present looking very like PMR but would not respond well to the lower doses.
If you follow this link:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find our "reading list" in the first post and the Dead Slow, Nearly Stop approach to reducing in the replies part, just scroll down to find it.
If it is actually GCA (giant cell arteritis) that you have then the initial reduction can be done in 5mg steps to get to a lower dose relatively quickly but as the dose reduces, the size of the reduction steps should also be smaller. A good guide is "not more than 10% of the current dose" but most people manage 5mg steps down to 30mg if they have no flares. Then the 10% guide is more important - 2.5mg at a time makes sense down to 20, or even 15mg.
Yes Monklands Hospital. I was originally sent to Hairmyers for diagnosis and that was where I saw the first Rheumatologist. He expected me to go from 30mg to nil in 6months. He then (thank goodness) referred me to Monklands for my 6monthly follow up .and I got the doctor I am now seeing.
yes I am a member of PMRGCA Scotland . I must say I find these forums extremely informative and helpful.
Barbara
I guess that I'm on it just for the hell of it, then. Do you really believe that if I could have reduced to zero in 2 years I wouldn't have?
It is nice to know where there is a good rheumy for people who end up with ones like your first guy. Where on earth do they get the idea PMR is gone in 6 months?
Thanks for your reply to kathy. You answered my question about pred tapering.
I also found an answer to the DSNS taper method I asked in one of the posts.
Think I will talk my Rheumy in to the taper method or I will get a new Dr.
Thanks Paul
Advice is to reduce by no more than 10% at a time, and stay at new dose, whether using DSNS method or another, long enough to make sure it is effective before reducing further. In my experience the lower the dose, the slower the taper needs to be, and the longer one should remain at each new level. At lower doses the good thing is that any side effects are also much reduced or absent.
Interesting that you mention the myofascial pain. I don't have that (as yet!), but I do have feet issues which I relate to PMR/prednisone. My body needs the 8m of prednisone right now...I do not seem to recognize any side effects at this time. Next month I will talk to my rheumatoid once again about Actemra, which may or may not be available to me. I do not like what I read about these biological drugs, particularly because the prednisone seems to be working so effectively and there are also serious risks associated with the Actemra. Why switch medications?
I have never considered the absorption of the prednisone...but I do typically require a higher dose of medication than the average bear.
Very logical idea. Thank you so much!
Good to hear from someone else with a similar problem😊 I do admit that I blame all brain fog on the prednisone...so, when I forget the tapering rules I am immediately punished and have to start over. It is always such a setback. The DSNS method is the best chance to taper!
Thank you.
I saw my new, predisone-friendly rheumi yesterday.He spent a whole hour with me, checking my past blood work and tests.He was appalled at the handling of my condition from the start and for having tapered when my markers have stayed high from the beginning.When I told him I had broken my pelvis and perhaps the old rheumi thought the high CRP and ESR were due to the fractures, he looked at the cat scan report and said he didn't agree.When I told him that the old rheumi told me to taper from 20 to 5mg in three weeks, he chuckled and shook his head- he said one can break a bone from a Vitamin D deficiency without having osteoporosis and that my fractures were only a month after starting the prednisone so they were not to blame.
He seemed in line with everything I've learned on here, told me not to be in a hurry to taper, to alternate the new dosis with the old, etc, but he says the symptoms I describe sound more like GCA than PMR but that due to the chaotic handling of my case, he is kind of confused and wants me to try Methotrexate.I really don't want to but as he seems genuinely interested in my case and very knowledgeable about GCA/PMR, I guess I have to give it a try as I really haven't been feeling very well on even 20mgs.anymore.
What do you think? I hate the thought of mtx that doesn't kick in till after 6 weeks.I was wondering if there is anyone on here that has had a good experience with mtx.
I don't know about on here but I do know a couple of people who have taken mtx with no problems at all and are sure it has allowed them to reduce their pred dose. They aren't GCA patients though.
How long it takes to kick in varies - and I don't think the 6 weeks is any more likely than any other guess. Some experts say it is as much as a year before they can see any real differences between using and not using it in PMR/GCA. If you can take it without any problems I think it is probably worth trying it - but not if the side effects make you feel even more ill than you do anyway.
I wonder if he thinks there may be something else going on. I imagine that if he wanted to try you with tocilizumab at any point he would also have had to have you "fail" DMARDs.
He sounds a find though - especially having been so up-front about the mess you have been through.