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.
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!
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.
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!
Have you had a Dexa Scan?
Sorry, ment for another post.
Gene, I flared a year ago April taper 1mg a month, in fact was doing the taper about every 6 weeks. Ended up taking 30 mg to get any relief. Still tapering from that, currently at 6.5 tapering to 6 mg. I brought all the articles I could get to the rheumatologist, finally she backed off, I go to see about every 4 months no more every 90 days. As long as she keeps prescribing the Pred, I am happy. As I have said before I wish one of these doctors with a Good complex could suffer PMR pain for just one day. Good luck to you, stay the course, listen to your body, stay positive and try to smile. It does HELP! ☺️
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.
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.
The trouble is a lot of doctors think they are the experts and do not want to know from us amateurs although I have seen several articles encouraging patient participation particular with the age of the internet. I found that 1mg was a bit much under 10mg but half was better. You may find you can manage 1mg though.
Taper should never be more than 10% of your dose. So once you are at about 7 mg, or even before if you have problems, a .5 mg taper using DSNS can work quite well, provided your particular case of PMR doesn't need more. I've got to 1.5 this way. Your doctor need to know IT ISN"T SLOW IF IT WORKS. You are far more likely to flare and need to increase your dose, ending up with a higher lifetime intake of pred, if you are told to continue tapering relentlessly in 1 mg steps to zero. Hardly anyone can do this successfully without problems.
Mtx "may" help you achieve a slightly lower dose than you would have otherwise. But mtx will not shorten the duration of PMR.
Meant for another post. 🙃
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.
I would like to know if you know of anyone that has ever been able to get of prednisone by using mtx?
I am simply amazed at the treatments handed out to PMR patients from GPs and Rheumys …. No wonder people are confused as to the pred doses ………….However...…..the other day I was looking at the diary that I had kept on my early PMR years regarding dosages etc etc. ….and guess what ?????. I was in exactly the same boat . Yep it took me quite a few years of trial and error to figure out the doses that suited ME. I see a lot of people having the pred doses raised and lowered. then having flares (or pred withdrawl?????) So these days if I look like having a flare ( or suspect things are not too good) ,I up my dose of pred from my stable 5 mg daily dose to 10mg for 3 or 4 days then straight back to the daily 5mg dose... If I have a big flare , 25mg for about a month or more may be required to settle things down. At this stage a slow taper is required to get back to 5mg That may take up to 2 years (definitely not a couple of months as some are told to do) because your biggest enemy then is the pred withdrawl symptoms, .and this can definitely mimic your PMR symptoms. So, until you are aware of this situation, you are at the mercy of your Rheumy, who is most likely not aware of it also. I know I may sound like a cracked record here , but pred withdrawl is very , very real...……...and for me, I dont worry about getting off pred completely, a 5mg daily dose will do me for ever...…..
Given that I'm new to this party, can you tell me of any side effects you've had cuz of prednisone or pmr? Have you gained any weight ( I've gained 6 lbs in 6 weeks!) and my eating patterns haven't changed at all! I'm also developing a "Moonface", much to my dismay! I'm not sure of this trade off. I'm also sooo emotional (I cry at petco commercials), and I'm becoming a bit Snappy which is Totally out of character for me. Oyy vayy!
GDay Linda....Yep, a weight gain is mostly evident...… But I over came that with a change of eating habits. Morning & afternoon teas replaced with a glass of water and a piece of fruit. ...I have the occasional biccy & piece of cake ….. Give away as much refined sugar thingos as you can, this helps the weight and your PMR pain as well...…….I have found , for me, sugar in fruits is not much of a problem. Fatty things can be cut down, like ice cream etc.( oh no she cried). sounds easy I know, but does take a fair slice of effort. Carbs can be a down fall as I like my bread and taters, as long as you have it in moderation , for me , it didn't seem to be a problem. So I guess you just have to be a bit regemented in your eating habits. .Moon face.... yep I did have that for a few years till I finally got my doses settled out. thinking back...… I think the moon face started to go once I was mainly under 10mg daily......I didn't seem to suffer with the emotional bit ,(maybe the male ego fixed that ). I found that if I feel hungry, I will go and do some thing constructive to occupy my mind...…. As for being snappy,, I do find I may swear a little more than I used to...… main thing is, dont let it get you down & dont think you are going to get off pred in a hurry, ( that is, if you really do have PMR)………………… The only other side effect that I am aware of is , I bruise easily , and & only have to bump into some thing to knock of a bit of bark...….. I have been taking Fozamax ,for other things, and maybe this has helped keep my bone density ok...…. Best of luck. …………..Billy...…………….
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:
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.
I know a lot of people (including me) who say it isn't the pred that gives them a potty mouth - it was the PMR! I swore roundly pre-pred and it is a sure sign of a flare!!!
Yesssss you're soooo right! I forgot to say about bruising! Good God..
I look like I'm being abused!😱