PMR back

[Karendeena]

Hi everyone it is with a saddened heart that it looks like my PMR has returned. Prednisolone didn't really suit me, gave me mental health issues (now have health anxiety) GI problems which could have been lansoprazole, so I tapered slowly and took the last dose early December. I have since had a CT colonoscopy and they can find nothing significant causing my bowel problems so probably pred triggered IBS. Anyway both my shoulders, upper arms, neck and upper back are painful and disturbing my sleep significantly (I struggle to turn over with the pain). My ESR is borderline according to my GP and blood results. Woman over 50 (I'm 64) should be between 0 - 30, mine is 31. Original diagnosis last year it was 67 and came down to 21 last September. I am having to pay privately to see a Rheumatologist as the waiting list is months. I am doing this as I want an expert opinion before going back on pred (I'm dreading it). I would like to hear from you guys what your thoughts are and if anyone else has been here once stopping pred and also what to do if pred doesn't suit. I also have paroxysmal afib so take anticoagulants. I can't take PPIs so worried pred will cause further stomach issues, or worst case an ulcer

[PMRpro Ambassador]

I'm not sure what the figures are but a proportion of patients do have second episodes of PMR after years between. However, if you took your last dose in early December, the most likely thing is that the disease activty was very low but has no now caused enough build up of inflammation to cause symptoms again - there a a lot of people who can tell that story and 3 o4 months is a common time before the symptoms return.

I can't work out from your past posts how long you had had PMR but it seems more like months than years - it is very unlikely the chronic autoimmune disorder that causes the inflammation has burned out and gone into remission so quickly. It is said that maybe 1 in 5 are able to get off pred in under a year but remain at a higher risk of relapse than others.

You can get enteric coated pred in the UK - and that contributes to protecting your stomach a lot (some doctors don't believe it, patients who use it do).

I also have paroxysmal afib - most likely caused by the autoimmune part of PMR damaging the electrical cells in the heart and it is definitely worse when the PMR is flaring - pred makes a big difference for me. I am on Pradaxa - doesn;t seem to cause any problems.

[Karendeena in reply to PMRpro]

Hi PMRpro, thanks for your reply. I was only diagnosed in May 2021 so to come off the pred in 7 months was a bit too optimistic! The side effects got to me mentally and physically and I continue to pay the price. I had an insatiable appetite when on the pred and piled on almost a stone. Since coming off (and after all the GI problems), I have lost the weight and some appetite, but not sure if that's part of the condition, perhaps you could advise?If I have to go back to pred I will ask for the enteric coated ones. My friend (who is a chemist) suggested the same.

I think it's strange that a few of us have afib as well, is it suspected there is a connection? I was diagnosed with afib first back in July 2020.

Another thing J forgot to mention was that I have episcleritis in my left eye according to my contact lenses specialist, this can be related to autoimmune diseases.

[PMRpro Ambassador in reply to Karendeena]

My afib is thought to be damage to the sinus node caused by the a/i part of PMR. Mine started about the same time as the early PMR symptoms but was very occasional then and really just mild palpitations. Rather more than that now!

Lots of people have an insatiable appetite on pred - cutting carbs, especially processed carbs and added sugar makes a big difference both to the appetite and weight gain. Many gain a lot more than you have! I, OTOH, craved carbs every afternoon with undiagnosed PMR, didn't know WHAT I wanted but carbs hit the spot and that was really unusual. I gained weight then - and it redistributed to the usual places once I went on pred but I didn't gain more. I later lost 35 lbs while still on 10-15mg pred - by cutting carbs.

[1Unknown12]

Oh how I can sympathize with you. I'm glad to be off prednisolone since last November. But like you have shoulder, hip arm and joint pain. The physical effort of turning over at night is a challenge some nights, others I get by. Sadly for me I have had to live with the pain from day one. I can hear many people saying that my PMR and GCA is not under control. But like you my ESR levels are acceptable. For me I am hoping time will sort things out as my body readjusts to being prednisolone free. I just hope that you manage to find relief. No answers for you just sympathy and hopefully some comfort that you are not alone.

[DorsetLady PMRGCAuk volunteer in reply to 1Unknown12]

Why have you had to live in pain?No matter that your ESR are “acceptable” - they are only part of the equation - symptoms are the key every time.

Not sure how long you were on Pred, but looking at profile not long I’m guessing - certainly not long enough if symptoms are recurring.

Having had GCA myself - undiagnosed for 18 months - I’m well aware how damaging it can be if left untreated - please get yourself back to doctor to check if it is GCA.

[1Unknown12 in reply to DorsetLady]

Hi. I was on prednisolone for 2 1/2 years . Starting at 60mg. For me I never had the three day miracle relief. Even at one time being stuck on 40mg for over two months as the system forgot me. So just had to get on with it. Therefore some days are better than others. I can't complain but just sympathize with people who still suffer with pain and stiffness. I know you know what it's like and the terrible consequence. If my memory serves you went to 90 mg. Which is an incredible dose to be on. For me if things get bad I have a short cut to my GP. But thank you for your advice.

[DorsetLady PMRGCAuk volunteer in reply to 1Unknown12]

Started on 80mg after losing sight in right eye - after first 2 weeks spent another 8 weeks at 60mg.

From then on, a slow taper which took best part of 4 & half years…..so 6 years in total…so well aware it can last a lot longer than some doctors advise.

Have had OA before, during and after GCA, fortunately after 3 joint replacements no longer in pain, and I get a good night’s sleep every night…..

Have decided come hell or high water I am not prepared to accept such pain again….you don’t realise how debilitating it is until it’s no longer there.