Where do I go next?

[Louisepenygraig]

That's probably a rhetorical question because 'next' is a phone consultation with my GP next Tuesday, which seems a long time to wait right now.

The story so far: August 2016 I was investigating possibility of mild fybromyalgia/chronic fatigue. I had blood tests and everything was normal then.

Health deteriorated and went to GP in April 2017 and blood tests showed elevated ESR.

Doctor said I had PMR and put me on steroids, starting at 15mg. After a month or so at this bloods were normal.

Reducing to 10 resulted in elevated ESR again.

Up to 12.5 and I was OK. Since then I've had two attempts at reducing, using PMR pro's tapering method. I have failed to get below 11.

In April I visited my daughter in Jersey City. I had set myself a goal of getting down to 10 before I went but at 11 symptoms came back. Blood tests showed elevated ESR again. GP said to go up to 12 or 13 and get another blood test when i came back.

Any way I decided to go up to 13 to allow for the stress of the journey. I booked wheelchair assistance for the flights, thanks to advice from this forum and the journey was fine, although I was glad I had my husband with me. When I was there I got out and about just enough to be reasonably satisfied although maybe not as much as I would have liked to. Once I got home it did take me longer to recover than I'd really expected but I was OK. I eventually had a blood test last Friday.

By yesterday I seemed to have come to an acceptance that I'm in this for the long haul and I'm probably going to stay like this for a while. Up until now I think I'd been assuming that if I just gently upped the amount of exercise I did and did 'all the right things', whatever they are ☺, I would slowly get more energy. I'd assumed for instance that I'd be able to do a little more this summer than last but now I've realised that's not the case. Somehow that realisation has felt wonderfully freeing and is making me think more carefully how I manage my life and priorities. For instance maybe I'll use Tesco 'click and collect' instead of going in and flaking out halfway round! One thing I learnt when I was away that getting out and about a bit more than I do at home is good for me, but I need to keep it simple, e.g. just go out for coffee and may be a short walk but not try to combine it with shopping and one or two other errands.

Anyway this morning I rang up for the results of my blood test. The receptionist I spoke to wouldn't give me the actual ESR results but they are 'abnormal' and need non urgent review from the doctor. So now I'm not sure where I'm going or what's going on.

I've never been totally convinced that I have PMR. I've not experienced severe pain or the stiffness that everybody else talks about. I don't have the symptoms that go with CGA either. I do get very tired and have aches and pains around my head and shoulders and my arms are quite weak.

Yesterday I had the strange feeling that from my waist up I was exhausted but my waist down was fine! I'm wondering if I've got something in the middle as outlined in a rheumatology journal that's been posted on here. I suppose at the moment all I can do is try to keep being calm and accepting and wait to see what the doctor says next week.

Up until quite recently when people have talked about side effects of steroids my reaction has been 'side effects, what side effects' but since going back up to 13 I've noticed thinning skin and hair loss and possible loss of muscle so I was hoping to reduce ☹

[DorsetLady PMRGCAuk volunteer]

Hi,

What symptoms did you have pre diagnosis? Or did GP base it on raised ESR only?

After a month on Pred, bloods should have been in the “normal” range, but that just proves the Pred is doing it’s job in controlling your inflammation. Doesn’t mean it’s controlling the underlying PMR - it’s not! Nothing does. You have to do that by amending your lifestyle in certain ways - and “upping the amount of exercise, however gentle” is not helpful! Yes getting out is good for you, but simple and gentle! With rest periods in between.

If you’re not convinced that your diagnosis is correct then ask for a referral to a Rheumy. You aren’t the first, nor will you be the last patient to be mis-diagnosed. But in the meantime be gentle with yourself, if you do have PMR it’s not going anywhere soon!

Take care.

[Louisepenygraig in reply to DorsetLady]

At the time i went to the doctors when my bloods were still normal I was struggling with tiredness and aches and pains. Whenever I read about fibromyalgia the symptoms sounded very similar. Random pains in odd places, burning and tingling feeling etc. They were intermittent and nothing like as severe as many people describe. These sort of symptoms go way back so are a separate issue - I have to remind myself this is still going on. Over the next few months i started developing pains down the side of my neck and in my shoulders and also had a instance of fainting right out once, very nearly fainting another time Both of these instances were associated with meetings of a committee I was on that I really enjoyed and was energised by and by me ignoring the warning signs. With hindsight my body was telling me I was pushing myself too far! Now I still get aches/pains round my neck and shoulders and upper arms and also my temples. It's difficult to describe but the quality of the aches is quite different from what I think of as fibro type pain.

I'm pretty sure the doctor has just based his diagnosis on the blood tests. He's reduced his hours recently so it's quite difficult to get a face to face appointment and I like and trust him. There's been a lot of change in the practice recently so not keen to try one of his partners (yet).

[DorsetLady PMRGCAuk volunteer in reply to Louisepenygraig]

Hi again,

Maybe he took the easy option in diagnosing PMR. Have to say it took 18 months for my GCA to be diagnosed, but by that time it was pretty obvious what it was - loss of sight! But it took a trip to A&E and an ophthalmologist - the GPs had no idea!

Trouble is, GPs are apt to go off in the wrong direction sometimes, so maybe a "new" one might be a good option, although I do appreciate that having to start again is a not always something you want to do.

[Louisepenygraig in reply to DorsetLady]

It's difficult isn't it. I've probably been seeing him for getting on for 20 years so feel he knows me and we have a relationship. There are about 4 doctors in the practice (It may be 5 now but some are part time) At one time i knew all the doctors but then the two most senior ones retired about the same time a couple of years back and there have been quite a few locums in the interim but I think things have stabilised now.

[DorsetLady PMRGCAuk volunteer in reply to Louisepenygraig]

Yes it is. I moved surgeries about 3 years ago, and my current GP is very good (senior partner) but he’s retiring in September. The trouble with ours is that it is a village surgery, the main one being in the local town so the doctors are shared between the two, so getting an appointment is a bit of a nightmare. Really they need more doctors, but as he says, the younger ones aren’t interested in sleepy Dorset, and those that are, are usually female with children so only want part time positions!

The village keeps expanding as well, so more pressure on existing facilities! One good thing though, it has its own pharmacy!

[PMRpro Ambassador in reply to Louisepenygraig]

My ESR will rise in response to other things - but rarely rises in response to PMR. A single raised ESR without symptoms should never result in a kneejerk increase in the pred dose. It should be repeated and a trend looked for. But even so - no symptoms, no increase in dose is necessary. The blood tests are so general that you cannot rely on them alone. A cold, an injury will result in raised ESR and sometimes raised CRP.

Your GP is out of his depth - either interview the others for PMR-background or ask for a referral.

[Louisepenygraig in reply to PMRpro]

Up until now a raised ESR has gone hand in hand with an increase in symptoms and upping the dose has resulted in a reduction in both. I don't know how much it was raised by this time. I'll see what he says next week and take it from there. I am considering trying one of the other GPs in the near future as I suspect Dr Crawford is working towards retirement and feeling the stresses of being the senior partner.

[PMRpro Ambassador in reply to Louisepenygraig]

Winding down to retirement was how someone put it to me about someone who had basically given up ... I'll thank you to work up to the day you walk out of the door if you don't mind!!!! I had to.

[Hidden]

I was DX 2 years ago and have been up and down especially first 18mths and had headaches etc. My markers went down after 2 MTHS initially I went down to 8mg feeling worse each time then markers higher than at the beginning. Dr then referred me to rheumy. The rheumy will just discount as many other things as possible to try and determine if it might be PMR. I had xrays blood tests for RA lupus etc. I am just into first week at 8mg again. Feel a bit blurgh but hopefully will settle. The main thing is you need to get the referral if you thing GP not hitting the mark and hopefully settle your mind on pacing yourself as you describe. If I stay at 8mg for rest of my life that's ok by me. It's around same as natural stuff body produces. The rheumy says I am atypical but I think that's just because they try and box the PMR and tie a pretty bow and treat everyone the same. But we each have our own beast and it'll go when it goes. Onwards and upwards!!!

[Louisepenygraig in reply to Hidden]

It all sounded so easy to start with - take these tablets and in two years you'll be fine. The only 'side effects' from the steroids were that the pain went, I had a bit of extra get up and go and my migraines disappeared! All good. Now the doctor is saying I'm 'atypical' too!

[Hidden in reply to Louisepenygraig]

It's funny I always thinks wanted and unwanted effects rather than side effects it like the when is a flower not a flower....when it's a weed. Just something in the wrong place. 😁

[scats in reply to Hidden]

What a lovely analogy!

[PMRpro Ambassador in reply to Hidden]

Brilliant!!! Quite correct. One man's side effect is another one's desire. In particular, think Viagra...

[Hidden in reply to PMRpro]

😂😂😂

[Hidden in reply to PMRpro]

You can get it OTC now. I will be asking women in chemists how many they have sold. I wonder if the pharmacist has to ok it.

[PMRpro Ambassador in reply to Louisepenygraig]

Funny - according to those doctors, about 2/3 of us are "atypical" or "aggressive PMR"...

[Hidden in reply to PMRpro]

They rely on the idea that none of us are in contact. Like you have said(?) It is probably occurs somewhere on a spectrum. The only thing is until you get to the end you are unsure of your exact position on that spectrum.