Posted , 12 users are following.
I went to see my Rheumatologist today for help with PMR flares, and tapering Prednisone. I presented him with the DSNS tapering plan and he completely discounted it, told me to taper 1 mg a month from 10 mg and is starting me on methotrexate. I hope it works but
I am not optimistic about it. I would like to hear from those of you who would like to comment.
0 likes, 26 replies
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lynda62707 Guest
Posted
Hi gene...I'm not an Expert by any means, have only been dx'd for about 7weeks now w/pmr. Started on 15mg. prednisone which helped incredibly fast (within hours!). However, I was in such a hurry to get off this powerful drug that I (along w/Rheumy) tapered WAY to quickly. Now I'm back to square one (almost, 14.5mg). Everything I've read about methotrexate is bad news. However I've not been on it so.I've no 1st hand experience. Keep reading this forum. It's very informative! Best of luck!
Guest lynda62707
Posted
I have not started on Methotrexate yet. I want to do the DSNS tapering schedule, but the Rheumatologist did not want to discuss it. I can't do the DSNS schedule unless I can find a doctor to give me enough Prednisone. I started the PMR trip in 2009, and diagnosed in 2011.
lynda62707 Guest
Posted
Wowzerr! You've been searching that long to get a Rheumy to prescribe correct amount of prednisone? UNBELIEVABLE! Where do you live? I'm in USA(California), and after a blood work up and a quick exam. I was put on prednisone immediately ( much to.my dismay, as I didn't want any part of such a strong drug with so.many side effects). However. it DID work. So it's looking like I'll be on it for the foreseeable future! Still anxious to make this as sweet and swift as possible! Find a doc. that is more familiar with pmr and I'll be pulling for you!
edward_80796 Guest
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edward_80796
Posted
edward_80796
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Meant for another post.🙃
Guest lynda62707
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I have always been given the amount of prednisone the doctors want me to have. I want to do the DSNS taper that the people on here talk about. I don't have any idea why the doctors won't let me try the slow taper, because none of their plans have worked over the last 7 years. After reading about methotrexate about an hour ago, I don't think I will go with that plan. I live in the USA, state of Georgia. I have never worried about taking prednisone, because the PMR is so bad I am glad to take it, but I have taken it for so long I think I should be able to manage my own dosage.
Michdonn Guest
Posted
margaret22251 Guest
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What a rude man your rheumatologist is. When I first started on my journey with pmr, I went to a very good hospital in Leeds.
the rhymi there was a good one, and I showed her the dsns paper I had taken, and she said could I have that for my patients as she thought it was very good.
if she who I think will be more knowledgeable than yours can accept this well all I can say is you do it IT is your body.
thanks to EIleen and other ladies on this forum I have learned to stand up for myself with the doctors, I swear when I go to my surgery they all run away.
good luck on your journey, by the way I am on mtx, but it's for RA and not for tapering off pred.
EileenH Guest
Posted
I took mtx for 4 weeks earlier this summer - I won't go into the side effects here but the cherry on the top of experiencing effects usually ascribed to pred for the first time was the overwhelming fatigue. I felt worse than I did in the 5 years of PMR with no pred. Luckily I have a very nice and experienced rheumatologist so I had no problems when I said no. I hope yours is more understanding with mtx problems than he is with pred!
The evidence seems to be that mtx needs to be introduced early in the journey - and if you have had PMR since 2009 I'm far from convinced adding mtx now will achieve a lot. You may well be one of the 5% whose PMR lasts for life - and. like me, you are very obviously way up on the scale for duration. I refuse to believe that all the "steroid sparers" in the world will "cure" PMR so I don't believe it will get patients off pred who can't do it by slow reduction. I recently had a long discussion with an immunologist who is very concerned at the use of multiple immunosuppressants to try to reduce the dose of pred being used in relatively safe low doses as there is evidence that this can, in the long term, lead to a raised risk of developing cancers because of the effect on the immune system.
However - I have a PMR charity friend who did manage to get a couple of mg lower while taking pred but when her rheumy tried leflunomide instead she was off pred in 8 months. Was it PMR? I'm not convinced, but a small study done by Prof Dasgupta in Southend, England, using leflunomide achieved freedom from pred in 21 out of 23 patients, one failed it and one was lost to follow-up (think).
Despite my own experience, I still think it is perhaps worth trying PROVIDED the patient has no adverse effects. I set my own bar pretty low but had I only had minor problems I would have kept going longer. But I need to be able to function as I do taking pred - I couldn't. I'd suggest keeping a diary right from the start and include everything, even if you don't think it could be the mtx. The rheumy was surprised at what mtx can cause - but all of the things I experienced are mentioned on forums by patients taking it, even if it isn't on the data sheet. OTOH - you may be fine.
Guest EileenH
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EileenH Guest
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I know people who have got off pred WHILE using methotrexate - but that isn't the same thing at all.
The underlying cause of the symptoms we call PMR continues active for something like 2 years or more with pred being required for an average of 5.9 years. About 1 in 5 are able to get off pred in 2 years but seem to remain at a higher risk for a relapse. One in 20 patients require pred for a very long time, sometimes for life. The PMR can go into remission at any time in that time frame but it is impossible to know when it will be in advance. I know of people who haven't managed to get off pred in 10 years - and then were able to after 11. So it is possible that although patients take mtx it has little or nothing to do with them being able to stop pred when they do. They would have got there anyway.
There are only 3 proper clinical studies about using mtx. One said it helped reduce pred dose, one said it didn't, one didn't know. And NONE claimed it could get the patient off pred altogether, just reduce the total dose the patient needed and even that took a year to be seen. In addition, this study followed up the patients after 5 years and found that while there was a small reduction in the overall amount of pred taken, there was no difference in the incidence of side effects said to be due to pred.
Once you are down to below 9mg you are on what is called a physiological dose - a similar amount to that the body makes of the natural corticosteroid, cortisol, and which is essential to life. Then, IMHO, there is little point taking mtx as the side effects of the pred are minimal and, apart from cataracts, are effects that seem to occur in patients of a similar age not on pred anyway, as was found in this study:
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
Once you get to 5mg the limiting factor is as much returning adrenal function as PMR - although there are many people who have found that as little as 1 or 2mg of pred is enough to keep the PMR at bay so it is also impossible to say how low a dose anyone needs except by trial and, all too often, error.
As I think I have said - I know someone who took mtx and was able to manage on a slightly lower dose of pred, maybe 7mg instead of 9mg. But still couldn't get any lower. On switching to leflunomide she felt a change kick in quite quickly and in 8 months was able to stop the pred. mtx MIGHT help - but you cannot know, my own rheumy only expected a couple of mg lower though was hopeful of more. It didn't happen.
ClaireJG EileenH
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My sister-in-law takes mtx for scleroderma and thinks it's great. However, I met a doctor who said it was an evil drug that he would never agree to take himself. As you say, everyone's different.
EileenH ClaireJG
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Yes - I know a few people who take it and have no problem at all. I didn't suffer the nausea so I thought that was a good sign. Instead I was hungry - the mtx seemed to cause pred side effects I had never had! I even put on over a kg in a month! My hair was coming out in tufts, I had stomach cramps that meant I didn't want to be far from the toilet, the sweats were far worse, and the fatigue was horrendous! It has taken a couple of months for the hair loss to stop - luckily the others things were away in a couple of weeks.
I was at a medical meeting in Korea just after (I stopped the mtx to go, I couldn't have coped with the fatigue) and was speaking to an immunologist who expressed concern about combining pred with mtx or other immunosuppressant just to try to reduce the dose of pred. She agrees with me that a couple of mg more pred is less risky in the long run than the extra immunosuppression. She says there is increasing evidence that it increases the risk of cancers later because of the effect on an already malfunctioning immune system.
ClaireJG EileenH
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Gosh, that's really interesting. You certainly went through the mill with your side effects! It's awful having fatigue as you just don't want to do anything. Having maintained your weight while on the pred, I bet you were annoyed to start gaining weight on the mtx. I don't blame you for coming off mtx so that you could cope with the trip to Korea. At least you were prepared to try it.
The increased risk of cancer would be enough to deter me.