Atypical PMR flare up

[PMRHortons]

A few months ago I started to get symptoms of pain and stiffness in all my joints which I have not experienced before. I saw my rheumi who did a full range of blood tests (at least an arms worth of blood) which were all within normal limits apart from a slightly raised CRP 5.6. He ordered a PET scan and a full set of X-rays of my joints also all clear. He was at a loss he would not px Prednisone he thought it was not indicated in my case instead he px amitrytiline and 2 pain killers. He made a referral to a auto immune specialist. During in the month I waited for the appointment I took only Paracetamol and the Amitrytiline which dulled the pain none of the other medication worked and I will not take medication unless it proves to be efficace.

Yesterday I saw the Medicin Interne at Limoges CHU. The appointment lasted for well over an hour and the specialist took his time in getting a full history from me. He thinks what I have is an Atypical flare up of PMR he says that in roughly 20% of cases this is a possibility I.E. joint pain and nothing showing in blood work in terms of inflammation. He views the clear PET scan and X-rays as a positive. We discussed treatment and have settled on 15 mgs of Prednisone to start reducing over time to 5mgs. I told him that this as far as I’m concerned is best option for me as I’m lucky and the previous 2 times I have taken Prednisone I have not suffered any serious side effects I can just get on with my life. He stated that he would be happy to leave it at 10 as this is a small dose and I have previously self prescribed and managed on this when I was stuck in Asia with a relapse. However if we can get to a maintenance dose of 5 this will be very good . He asked if I wanted to continue to see him or go back to Rheumi I decided to stay with him as if I continue to have atypical symptoms he is going to be able to pick them up.

Today after taking first dose of 15 mgs prednisone yesterday feeling benefit already in terms of reduced pain and stiffness.

[DorsetLady PMRGCAuk volunteer]

Good news on the pain relief, and a specialist who doesn’t consider 10mg to be a high dose.

I do wonder why some doctors think because you don’t have high inflammation markers your illness must be atypical especially when you have all the other symptoms.

I happened to read some of my old papers the other day and noticed by then GP had stated my GCA was atypical - it wasn’t, all symptoms except for high bloods (certainly at beginning) were very typical!

Perhaps it was her reasoning for not diagnosing it despite having 18 months to have a stab at it! Or am I being cynical!

[PMRpro Ambassador in reply to DorsetLady]

Cynical? You? Perish the thought!!!

I agree - too many of them will attempt to rewrite history when it doesn't fit their worldview. Too much of that altogether these days ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

😉 me saying nothing! 🙊

[PMRpro Ambassador]

A rheumy to be treasured one feels - treat the patient not your imagination! And I find his "10mg is a small dose" very comforting. I am doing very well on 10mg at present - I will try to get lower but 9mg was a tad wobbly.

[GOOD_GRIEF in reply to PMRpro]

Take some of your own advice.

A 0.50mg reduction might work, and then you can see what's next from there.

[PMRpro Ambassador in reply to GOOD_GRIEF]

I can't cut my tablets and I did use my own approach. 9mg was fine for a few weeks and I'm not sure if it was entirely dose or other factors.

[cranberryt]

Glad you found a dr who listened to you! I am having the opposite experience this week! So frustrating when we feel like we know more than the dr but how to convey that without offending and while remaining respectful as we still need their help! I would stick with the doc that listened to you!

[PMRCanada]

I was not aware that there was such thing as an “autoimmune specialist”? That’s what I thought a rheumatologist was. Regardless I’m so glad you met with him and sorted out a reasonable plan moving forward. Good that you are sticking with such an informative specialist.

[Rugger in reply to PMRCanada]

I suppose it depends where we are in the world. PMRHortons is in France and seems to have found a good doctor.

[PMRpro Ambassador in reply to PMRCanada]

Even within the specialisms there is more specialism. Rheumatologists in general will claim to specialise in vasculitis - but their knowledge lags far behind the unit at the Hammersmith in London which concentrates on small and large vessel vasculitis. There is a Lupus Centre of Excellence - again usually a long way ahead of a rheumy at a general hospital. And here in Italy we have a dedicated centre:

hunimed.eu/news/humanitas-o...

[Linny3]

Since you are atypical, I would wonder if you couldn't start a taper soon and get under 7mg.

That seems to be one of the "magic levels" that is so hard to get to and under.

If I had it to do all over again, I wouldn't have stayed at 15mg for 3 weeks. I would not have started tapering with 2.5mg. for me that was way to fast.

After almost 3 years, I am still struggling to get below 13mg.

[PMRpro Ambassador in reply to Linny3]

Why should being atypical make it possible to taper soon? I'm atypical, had a great result with 15mg - but after 15 years of PMR and 10 of pred I'm still here and on 10mg of pred. I have been lower - but not at present.

[Linny3]

My thinking was, if this person doesn't have the usual symptoms, then maybe will be able to taper differently than most of us. Just thinking out load and trying to spare them years of trying to taper from 15mg. Seems like there are a lot of people here that have been very successful in tapering from 15mg to 10mg if they did it early in treatment as opposed to later.

[PMRHortons in reply to Linny3]

I am going to be tapering in the usual way the symptoms are Atypical but the treatment remains the same. The last 2 episodes I had tapered to 0 and the symptoms returned within a matter of months. I have discussed with this specialist tapering in the normal way but staying at 5 mgs as a maintenance dose of if I get to this symptom free.

[Hidden in reply to PMRHortons]

I am described as atypical by rheumy. He said at least 20% of us are atypical in presentation and probably a minimum of another 20% in response to treatment based on people being reduced too quickly if this forum is anything to go by. In terms of how they define and treat PMR most of us here are probably atypical in their eyes. I went on a dmard in year 1 (which I most likely wouldn't have done if I fully understood everything), entering year 4 at 6mgs for the past 11months. I may have been in exactly the same position without a dmard. I don't hold much stock by the labels typical/atypical anymore. It more like there's a lack of understanding by many GP's of how the symptoms play out and how pred management should, as guidelines state, take account of individual needs. I suspect I will be on a maintenance dose if 5 or 6mg and that's fine. I am lucky that there's no real rush at the moment. But you never know what's round the next corner. Good or bad!🥴🤗

[PMRpro Ambassador in reply to Linny3]

When people can get from 15 to 10 easily - and I did the first time - it doesn't mean they can get any further. What it means is that the activity of the disease at the early stages is relatively low - and there is no way currently of knowing that. All you can do is reduce the dose carefully and see what happens. But diving into a reduction willy-nilly MAY mean you have a flare that is then far more difficult to manage.

[Linny3 in reply to PMRpro]

What I was meaning is, for me, it would have been so much better to get to the 10mg faster and stay there as apposed to staying at the 15mg longer. I didn't mean one would do it willy nilly, just get there quicker as the body allows. Then remain at the lower dose longer. As always it depends on the individual. Sorry I am not explaining my thought very well.