Hi, I was diagnosed in October 2023 with PMR after ignoring and attributing the symptoms to old injury. I allowed the flare up to get to the point where it took me 4 hours one day to physically get out of bed. Initially I was put on 20mg of pred which unfortunately wasn't enough and was increased to 40mg. In December I was put on 15mg mtx a week with 20mg daily dose of pred which was reduced to 10mg over the next month. In March the pred was reduced to 5mg daily. My symptoms were reasonably under control so I decided to start a couch to 5k a few weeks ago. Only managed thr first very mild session as I developed a sever pain in one knee which then transferred to pains and stiffness in both hands, arms and shoulders. I have increased the pred to 10mg as yesterday to try and get it under control
The one symtom I always seem to have is tiredness regardless of whether the pains and stiffness are present. Also was very suprised to get a flare-up while on both pred and mtx. Crp was 11 last week but esr was ok.
Any advice greatly appreciated as finding it difficult at the minute
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MarkC1971
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You are not on enough pred, you have been reduced FAR too fast - and MTX has a very mixed reputation in PMR. It works brilliantly for a very small cohort of PMR patients but for most it either only allows a small reduction or makes them unwell and for some it simply does nothing.
Oh - and the fatigue - you were on high enough pred for long enough to have affected your adrenal function. And the worst thing I experienced with MTX was fatigue - after 3 weeks I had about half a day before the next dose was due where I felt almost OK. The rest of the time I was struggling to put one foot in front of the other.
I did stop the MTX and after a couple of weeks the fatigue was gone. It too a few months for the other adverse effects to improve - and months to lose the kilo of weight MTX had added! Although a study claimed that MTX decreased the onset of atrial fibrillation I already had a/f and I felt it made something about it worse. Even though it was the low rheumatology dose, I think it was then that the bradycardia events started.
Interesting on the fatigue and mtx. I do find that the pred is more likely to increase my appetite than mtx.I am hoping to have a consultation with a new rheumatologist in the next few weeks and will bring up the points raised in this post. Thanks
The point is that the MTX makes pred effects stronger - the idea is it increases the antiinflammatory effect but it also can increase the other effects.
Hello Dorset lady,By reasonable under control I mean the discomfort levels were alternating between 1 and 4 from a 9 when it was at its most severe.
While on pred alone my effective dose was probably around 30 + mg a day. The mtx must be having some effect that I can reduce it , all be it looks like that is probably 10 to 15mg.
If it is PMR and you start at 30mg then even without MTX you should be able to reduce the dose, certainly to 20mg and usually 15 provided the steps down are not too big - i,e, 2.5 rather than 5mg at a time. Beyond 15mg, 2.5 is often pushing it and we think 1mg is advisable - top experts in tapering suggest not more than 10% of the current dose as a rule of thumb. But rushing and big steps can cause all sorts of problems - MTX or not.
Holy moly that was a quick reduction. I too needed 30-35 mg to really get things under control (even took 40 mg for a few days on a cruise)..anyway, it's nearly a year later now and I just got to 15 mg and plan on going very slowly from here on out, Every taper attempt past 22.5 mg and more than 10% "failed" and the pains all came back within 5 days. Also, as some of us discussed a few months ago, even sitting on a different chair for a while or sleeping in a different bed can kind of flare us up.
I would for sure do what you did and up it to 10 mg for at least a week, probably 2 weeks. Then go 1 mg at a time each month and see how that works.
Hello Sidra 1968,Thanks for sharing. I will see how I respond in the next for days to the 10mg and if needs be I will increase gradually again to see where the most effective dose lies.
To be honest one of the reasons I reduced the pred is to do with the weight gain as my appetite is enormous the higher the dose gets.
I found I was eating more for a "celebration" that I felt better and was back to a somewhat normal life. My hunger really didn't increase, but we all react differently to every medication. My actual weight hasn't really changed, but it the "fatter" areas have moved to the stomach and face, per usual. Also, I have the moonface now (took about 10 months for that to start), but honestly at 56 I don't much care, as long as I have way less pain than before the Pred..now if I was 25 I imagine I would
Hope your plan works, lots of trial and error with this. I have defied the docs more than once, but hey, it's not their life being ruined by pain, so...
Cut your carbs drastically, especially processed foods, added sugar and limit fruit and root veg. It really does make a difference, Pred makes your body release glucose from the body stores in liver and muscle - in turn that triggers release of insulin that sends the blood glusoce level tumbling too low and you crave carbs to bring it back up. Eating carbs on top makes the roller coaster effect more exaggerated, excess insulin that is around then deposits the glucose as fat in specific places, around the midriff, face and the back of your neck. The sooner you start the less weight you will have to fight later.
As PMRPro says, cut your carbs. I have never been able to lose weight ( blame my underactive thyroid) but when I was first treated I was on very high doses and was so wired I forgot to eat and lost 10lbs... and even now I've only put back 3lbs of that after 3 1/2 years. I'm not as strict as others but I don't eat any bread, potatoes, pasta or rice (and am very strict on that part) but do pretty much everything else in quite large amounts. Also there are so many low carb options around these days. I find any low carb bread vile and inedible but low carb wraps and pasta ok. Happy to give you my list! Good luck with the new rheumatologist. I think we all understand that one.... chasing the one that really gets it and listens....
I agree that the taper was far too fast. Are you under a Rheumatologist and have they given you a run of tests for GCA for instance? It did take a lot of Pred to get on top of the inflammation. When I struggled my Rheumatologist (a star) arranged for a vascular ultrasound test and right enough I had GCA/LVV as well as PMR. It is worth doing this when PMR seems hard to control. Just a thought.
I am currently in the process of changing rheumatologist as the first guy was only ticking boxes and did very little investigations into my symtoms. I was diagnosed initially in hospital. I will discuss your point with the new consultant which hopefully will be with a month. Thanks for the feedback.
Fatigue/Brain fog/Pain in that order. Frustration if I was to add the fourth man of the apocalypse.
PMRpro advocates the search for QOL above all else with this demon!
Ages to get in and out of cars/beds/etc. Loved ones find it difficult to understand as you probably look ok. Very irritating condition. Sensibly managed is the key.
I think we all understand what you are going through! Know that and give PMRpro a lot of credence!
Don't isolate and withdraw! You're sure to get some well-aimed humour on the way!
Also note PMRpro's advice on diet. It's incredibly effective. I've lost 10kgs from 84kgs in the last 6 months. Got about 6-8kgs to go. Next step is to refine the diet. Try not to leave it all to the doctors. We patients have a lot to offer and gain in educating ourselves and taking responsibility for our health. A starting point for you might resemble the following,
Foods to consider eliminating:
All grains/Dairy/Nightshades/Legumes/Brown rice.
Foods Allowed:
Carbs (sweet potato)/pumpkin/Quinoa/Buck wheat/Sprouted breads/a little white rice)/Protein/Nuts/Seeds/All herbs and spices (except chili - well a little chili)/All fruits (careful, sucrose)/Nut butters.
Told you a sense of humour will help get this down.
I'm far from convinced about a general ban on nightshades - all it did for me was make my diet boring!! There is dispute about whether individual members of the group are pro or anti-inflammatory. And I'd prefer legumes to remain on the list but less of the sweet potato group you mention.
You're going to Laugh - I got that from my GP! He said that I had myalgic encephalomyelitis (CFS), diet induced as well as the other stuff. My wife ang I were preparing to try the Dr Mosely approach including fasting. Tragic!!!
I'm sure anything that MarkC1971 you create in this area will be of great interest to us.
And PMRpro, Your QOL comes shining through! (haha). Bless you mate!
cUrcumin? I know people who have used turmeric in cooking and swore it helped but quite a few have tried the supplement versions and got gut problems - if you put up a post with it in the title, check the spelling, you should get Related Posts where others have talked about it. Or try searching PMRGCAuk
In general though - my advice would be don't waste your money! Nothing will replace pred in PMR. It may help but it too has adverse effects and can interact with other medications. Curcumin and pred may result in extra bruising, even worse if you happen to be on anticoagulant medication.
All great points PMRpro!!! It seems there may be an additive effect with blood pressure medication which is not good for me as I take Inderal 40 and Telmisartan which already have an additive effect on BP. I monitored my BP yesterday which made me wary of the further additive effect of Curcumin. More recording today!
Thanks for you're feedback. I am looking at starting the slow carb eating plan. While it does include some of the food groups you exclude it seems to have great success. Effectively you drink no calories, eat no white foods or fruit or dairy. You eat protein, veg, and legumes and one day a week you can eat whatever you like!
Sorry to hear of all your issues. Hope things pick up soon.
Was just wondering, could I ask, how did you change your Rheumatologist? I feel very similar with mine. That being that he generally gives me the impression that I should be pleased I'm still alive when I see him every 4 months, what's my problem?
He is definitely a 'flow chart guy' ......these symptoms, send for this test, but nothing really proactive. I see him again on the 28th of June and I'm going to let him know I'd like better or I'd like someone better.
Hello Paul,I live in Ireland and went private after the initial public hospital diagnosis. The HSE as its know here is very poor and I would have had to wait months if not years to see a rheumatologist. My health insurance covers a small portion of the fee.
Don’t assume a private consultant will be the best. Like you I was diagnosed in a private hospital and was under one of the top Rheumatologist in the country but she had absolutely no interest in PMR. On another visit to my local hospital I was seen by the HSE Rheumatologist. He is far more knowledgeable and interested in the condition. He is streets ahead of my previous consultant. If you can get on the HSE list go for it along with seeing your private consultant in the meantime. The waiting lists are not bad in all areas and once you are in the system the service is excellent.
Tallaght Hospital has a unit specialising in GCA/PMR. If you are staying private there is a Richard Conway based in the Blackrock clinic and public in St James who I have seen on a webinar on PMR and he seems very knowledgeable
Hi, agree on the private consultants as that has been my experience with the first one. I have researched the new guy he gets good reviews .My experience with the HSE was different to yours. I was impressed with my two visits, one to a&e and a referral then too a day of more targeted tests. But it was the staff that advised to go private as the wait list was very long to see a rheumatologist.
I think it is easier with RA or other more normal rheumatology disorders. PMR is very common but you'd never think it and rheumies specialise and PMR is rarely at the top of the list for their interest. It is quite different from an arthritis and management can be trickier - not least because only pred really works unless you have access to tocilizumab or Kevzara but the average rheumy is terrified of using pred long term and drive patients to reduce too fast or try other medications that don't work.
Get a rheumy whose interest is RA - and you may meet resistance and lack of interest in "just " PMR even though if you had RA they would be amazing.
Very interesting comment. My first rheumatologist decided without any real investigation that it was probably not pmr as in his experience pmr was like hens teeth! Even though the referrals from both hospital visits concluded it was pmr and not RA and from my own research all my symptoms were text book pmr. My RA tests were negative so he decided I was seron negative to prove his theory. Having spoken to the new rheumatologist assistant they have the opposite opinion on how prevalent pmr is .
whereas the truth is that in the USA it is the second most common rheumatological condition after RA and the most common cause of rheumatic symptoms in over 65s.
I have had a few unscheduled one's! Feel really bad when this is the only option. My work day can involve alot of physical activity and during this recent flare up I can only manage a couple of hours of light work before I have too stop.
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