Friend with pmr

[Suet3942]

My friends 75 year old husband was diagnosed with pmr 4 weeks ago. His rheumy started him on 15mg and told him to drop to 10 mg after 4 weeks which he has just done. He said he's not in any pain but feels very weary all day until about 5pm. He's been told to decrease by 1mg every month starting in 4 weeks time. Do you think he's feeling so tired because it's too much to drop too soon?. I was told to stay on 15mg for 3 months before dropping to 10mg. Could it be adrenal deficiency this early in the illness?.

[catdance]

Just happened to be on here when your post popped up. I'm by no means an expert and I'm sure that one of the other more experienced will be along shortly to give you their wisdom. I know from my experience that the majority of Drs and Rheumotolgist out there, no matter what country you live in, seem to like to keep things very short term and rush the tapering. I am not a Dr and everyone is different but it does seem that the dose is very short term and does seem like a very quick taper. Perhaps the patient or his wife could ask for a blood test to check the inflamation markers to see that it is improved? I just had to do that with my Rheumy. Yes fatigue is an ugly beast known to be common with PMR. I would definitely call the Dr to inform them of the syptoms as well and maybe ask if a slower taper would be of more benefit. As others from this support group have said; We are not in a race to be done with the pred but to find the dose that controls it. Some only need a small amount, others need much more. I started at 20 mg but my Rheumy was in a rush, (&still is), to get to the end result of being completely off of the pred and even wanted me to use another drug to "help" with the taper. I think your body tells you what you need. I recently was down to 4 mg and had to go back to 15 mg just to get it back under control. I still don't feel the best but this way I know I'll get there. This is my 4th taper attempt.

[piglette]

A male friend of mine who was diagnosed with PMR dropped from 15mg to 10mg in four weeks with no problem. He then reduced by 0.5mg a month after that though.

[Nextoneplease]

Hi Suet 😊

I have read many times on here that some men (though not all) seem able to reduce pred more quickly than most women….so I think that’s not so much of a surprise.

However, I do think that dropping by 1mg a month, come what may, might be a bit much. Really as ever, it depends on the symptoms. He could be one of the lucky ones!

I think it’s unlikely he’s tired due to adrenal issues at this stage. What it might indicate, though, is that the autoimmune part of PMR (the basis of it all) is still active. And I think that would be another indication that he should be very careful with further reductions, not pushing on if symptoms recur, and maybe dropping by 0.5mg a month if that feels right.

I hope he talks these issues through with his GP and that all goes well 😊

[SheffieldJane]

I definitely needed 20 mgs and I stayed there for 6 weeks at the outset. I think my first drop was 2.5 mgs, this felt steep and my next drop was 1 mg ,4 weeks later. My fatigue came much further down the road, even when PMR was at its most active, pain and stiffness were my principle symptoms.In my view 15 mgs to 10 mgs is just courting trouble. In fact 1 mg every 4 weeks until he reaches 10 mgs might work as long as he is fairly symptom free. Suggest that he joins us and has a browse of FAQs. It won’t be Adrenals yet. He is ill and needs rest an after lunch nap at the very least. As you know Sue, Pred is not curative it is just dealing with the inflammation like a painkiller. He can’t carry on as normal either, he needs to spend his energy like a miser spends his money. Obviously we are all fairly unique in our response to this disease and Prednisalone. Perhaps some negotiation with his doctor, armed with some facts from this site would help?

[HeronNS]

I'd have thought 2.5 at a time would have been better. The 5 mg drop is 33% of his dose, and rule of thumb is no more than 10% at a time. He could try 12.5 ( he can cut a 5 mg tablet in half provided it's not coated pred) and if that goes well, try a second 2.5 in two weeks. Although I personally think that a month at the new dose would probably be better. Then if all goes well he could try a second 2.5 drop, again for a month. After that, perhaps 1 mg for a month or two, but definitely slow down to half a mg at about 8 or 7 mg, again, depending entirely on how he feels. "It isn't slow if it works", and if he goes so fast and gets symptoms again then he'll have to increase the dose and probably end up taking more pred than if he tapered very slowly. Patients have developed slow taper programs which you can find in our FAQ post. Certainly after reaching 10 mg a slow taper plan is advisable, if not before. And his goal is to find the lowest dose which still controls his symptoms, and stay there for a few months, because it is unlikely the PMR will go into true remission under two years, although for some lucky people it does.

If he does decide to go with a slow taper plan he should run it by his doctor. I asked my doctor what she thought of the plan I showed her, and she agreed it would be worth trying. I was going to anyway, but it was nice to have her blessing!

[Ronzy in reply to HeronNS]

I on pred tapperin can you control you own pred I get just inough to do her way 🥺🤷🏽‍♂️

[HeronNS in reply to Ronzy]

Does your doctor not understand that PMR is not like most other diseases which are treated with pred? Pred can't cure us. I believe it was PMRpro who has said that pred is our pain control. Also would your doctor take a patient off insulin if their diabetes was being well-controlled? I think not!

In answer to your question, I have always been able to control my dose. Started in 2015. My doctors (2 so far as first one moved) have always prescribed plenty. The only time I didn't get a prescription renewal was when I had just tapered to 1.5 and was venturing on 1, and when I went for a renewal doctor said, use up the tablets you have, stop and see what happens. Well, as I had just enough tablets to taper using DSNS to get to zero if there were no hiccups thought I'd try. But after a couple of failed attempts I gave up, went back to doctor, saw a locum, who told me to go back to 3 and gave me a good prescription. I regret to say that I think this little adventure of attempting to taper too low, too soon, too quickly, probably set me back, possibly permanently. I spent a long time at 2.5 and 2. Sometime in 2019 I thought I'd attempt to taper off, as I'd been stable for a long time. I took three months to taper by .5 mg each step, a year to get to zero. Unfortunately after a few weeks at zero I had to start pred again, and had another good length of time at about 2.5, then had a major flare. This time it was not from too fast a taper, or too low a dose, but I think a real flare of disease activity as my inflammation markers were also quite increased, higher than ever, actually. That was a little over a year ago. I am now on 3, with very cautious steps to 2.5 again! Looks like I'm supposed to stay at 2 or 2.5 forever, and if so I shall just be glad it is a low dose.

[Seacat30]

Surprised that there wasn't a 12.5mg step in the taper.

[Theadmiral]

I was diagnosed just before Christmas 2021 and started on 20mg Prednisone with a planned taper to 15mg four weeks later,then 10 after another 4 weeks. There were some on here who criticised my doctor for such big reductions. However not being an expert i preferred to be guided by her knowledge over the opinions of some members here. I accept they were no doubt well meaning but to me my doctor is the expert. I tolerated the drop to 15mg with no problems but then to 10 brought on pain so was increased to 12.5 for two weeks then back to 10 and no further problems. Will be down to 9mg next week and hope it continues to go well.

[Flivoless in reply to Theadmiral]

Qualifications are one thing but they are not a substitute for real experience.

[SheffieldJane in reply to Theadmiral]

Actually that’s what people are suggesting, one more step in the initial taper from 15 mgs to 10 mgs. This is what you ended up doing.

[PMRpro Ambassador]

No, this soon the relatively big drop was probably fine if he doesn't have any pain or other symptoms returning - I did it originally - and at least the rheumy has slowed down now. It takes some weeks for the adrenals to adjust to the presence of corticosteroid in the body and more like months for adrenal insufficiency to become a factor. There will be a reduction in the pred-effect though and the body needs a bit of time to adjust to the new dose. But if the longer term dose that is going to be needed is low - you CAN get away with a speedy reduction early on. It's when it doesn't work you have to regroup.

Fatigue is an inherent part of PMR - for some people it may be balanced out in the first few weeks with the higher dose of pred but it will be more apparent as the pred dose is reduced. There are all the fatigue management posts in FAQs to explain.

And there is the possibility that he felt wonderful on the 15mg and started to do too much so is a bit disappointed now?

[Hidden]

When I was first diagnosed with PMR in Dec 2019. Started on 15mg for 15 days then dropped to 10mg for 31 days......then reduced by 1mg 29 days. By 1/3/20 I'd reached 8.5mg, on that for 12 days when GCA presented itself on 1/3/20. I was then instructed to take 40mg for only 15 days (not long enough) then reduced to 10mg. I didn't know about this forum back then and wished I had as the ladies and some gents have far more experience of these diseases. These tapers recommended by rheumatologist was far too quick, that's why I think I relapsed a long the way. Now I'm taking each mg for a month, sometimes longer and only tapering by 0.5mg. I can't speak highly enough about the advice I've been given on here. When I mentioned this forum to my rheumy, I'm pretty sure that was the reason he discharged me last year. However, I'm asking for a referral back to him, if I'm lucky enough to get to 4.5mg, that I think brings me into September this year I will need a test to see if Adrenals are waking up.

[Suet3942]

Thank you for all your input on this matter. I've tried to get him to join this group but he hasn't to date. His wife is disabled so he has to do the majority of the chores so is finding the fatigue very hard to deal with. He needs to pace himself.