Fatigue and Pred tapering

[Heimat15]

Was diagnosed with PMR Fibromyalgia & Rheumatoid arthritis in Jan 2023. Have had Osteoarthritis for some years. Also diagnosed with Bile acid malabsorption just after Jan 2023 although the symptoms started at same time. Was so ill Xmas 2022, had lost 2stone, was so weak and in severe pain lifting cup of tea felt heavy and could not life my arms up. Could barely walk. Saw what I thought was Rheumatologist at my G.P surgery Jan 2023 who diagnosed all the above except the Bile acid ( many tests to come to this conclusion) which was diagnosed by hospital. Only had sporadic contact with the G.p. Rheumatologist by phone and she has been persistent in cutting my Pred down from 20mg to 7mg which I did last year quite successfully. Over winter I caught Covid took Pred back up to 20 as advised by different G.P. but since have struggled to get below 7.5. Finally saw G.P. Rheumatologist face to face last week. I've cut down to 7mg and feel terrible. Weak, nauseous, pain in neck, shoulders & hips. She said I looked well ( everyone else I know saying opposite) and that I shouldn't be having these symptoms and it is my perception that is causing them. I said I felt I wasn't being heard so she said she'd have word with Rheumatologist at hospital as "there may be something else going on". So it seems she is the G.P. surgery's "Rheumatology expert" and not the real thing. She's told me to cut down further and ring surgery who will get face to face appt. With her so she can see for herself. She said last blood tests were normal but they were taken on 7.5mg. & I said that. I feel I'm not being taken seriously and unsupported. Also my Pred is issued monthly but only after this G.P. o.k.s it. Have had anxiety in the past and this is under control, but I feel she is judging me. What can I do to move forward? Would appreciate advice.

[piglette]

I do get the impression your doctor does not have much idea about PMR. If you have pain DON’T REDUCE! PMR will turn round and bite you. Some people never have raised inflammation markers blood tests, up to 20% in fact. It does sound like you are at too low a dose. You should go back to the last dose where you felt OK. At around 7mg your adrenal glands start to wake up. The pred does the work for them over around 7mg. As you drop lower the adrenals have to start working after their sleep and sometimes they are none too keen.

[Heimat15 in reply to piglette]

Thank you for this. It reinforces what I feel is going on. I'm going to request an appointment with the hospital Rheumatologist. As it is, this G.P. is making my condition more stressful and more difficult to manage when PMR makes life difficult enough as it is.

[piglette in reply to Heimat15]

In fact a lot of people at lower doses have built up knowledge about PMR and often know more about it than a lot of doctors. What does work for us is Pred, a good diet, rest and an unstressful life also help. Good luck.

[Heimat15 in reply to piglette]

I've learning so much on here and I'm trying to do everything right for my health. The stress is difficult because of various things, (including said G.P.) but I'm practicing meditation and have joined a nearby gardening group a few hours a week. Nice company, gentle exercise and it's relaxing. Also, having my gut instinct validated by your reply has helped today. Many thanks.,😊

[piglette in reply to Heimat15]

I think minimising stress and relaxing important. Looking after yourself And eating healthily. There is a gardening group on Facebook for PMR and GCA set up last year from this group initially at facebook.com/groups/6288051...

[PMRpro Ambassador]

I suspect she is missing the adrenal connection. It sounds as if you were OK at 7mg before Covid - and struggling at 7,5mg now? Weakness and nausea are common signs of adrenal insufficiency and so are body aches.

Your 7.5mg may be enough to keep the PMR just about under control - and your markers will only rise if there is enough inflammation present for long enough to trigger the liver to produce the proteins that make them rise. So they often lag a long way behind symptoms appearing so symptoms should always trump blood results. Many inexperienced doctors don't get that. Nor do they get the double whammy at this intermediate dose - not enough for your adrenal needs to be fully covered but too much to trigger the return of adrenal function.

I also experienced a GP "with an interest in rheumatology" but in my case it was in the confines of the hospital outpatients clinic. I had seen the consultant 8 weeks earlier and he did a full history and examination and while he didn't think it was PMR he didn't know what it might be and ordered some tests and imaging, He also handed me a 6 week taper of 15/10/5 mg pred and stop to get me through a business trip to the USA. Six hours after taking 15mg pred I'd had a miracle, most pain and all stiffness gone! I kept a diary and a GP at my practice agreed to restart the pred when within 6 hours of missing the first 5mg dose it all roared back, it even felt worse than before. I turned up for the follow-up appointment, expecting to see the consultant who would deliver the verdict. Instead I got a complete stranger who repeated the previous history taking and examination before declaring himself baffled and he'd have to get the boss. It turned out this second guy was a "GP with a special interest". They work in OP to get a basic training in long term management of rheumy patients. But their knowledge is often sparse - far better suited to managing inflammatory arthritis patients. Even proper rheumies struggle with PMR.

Neither of them was interested in my side of the story - not even the 6 hours response to a moderate dose of pred which is usually taken as a sound brick in the wall of PMR diagnosis. Luckily for me, I was about to move to Italy so couldn't start on the desired sulphasalazine until I had a consultant rheumy. A different GP snorted and said it sounded pretty PMR-ish to her and provided the needful pred for me for the next year or so until I was established in Italy, No-one there has ever suggested I have an inflammatory arthritis until recently when it is possible something is going on in my lower back. But this is 15 years later!!!

Unfortunately, I don't really know what you can do if you can't escape the clutches of this imperfectly trained and inexperienced GP. Getting to see a real rheumy might help - but they aren't always much better and they may decide not to see you as you have this "GP with a special interest".

[Rynn33]

If this person diagnosed you with all three of PMR, RA and Fibro in one go but is only treating you with Pred , that speaks to inexperience and I would definitely find a full consultant to talk through this.

It does seem from your story that it’s mainly PMR and you’ve done really well to get down to 7mg ish this quickly.

Under 8mg to 5mg I was very tired and believe it was adrenals and it was such a slog so do rest and nap as much as you can and stagger bigger events etc as that helps.

Don’t let the GP specialist’s over confidence quieten you as your gut feeling is most likely correct.

[Heimat15 in reply to Rynn33]

Thanks for the advice and reassurance.

[PMRpro Ambassador in reply to Rynn33]

Indeed - RA can have a polymyalgic presentation and if the patient is that complex, they need referral to an experienced consultant with access to the testing and imaging that is needed.