Update:whats going on

[Monkey321]

Hi, saw my physio today, explained to her that leg, back, knees, hips pain haven't improved, in fact getting worse. She advised me to stop all excerises she'd given me and to see if I feel better, worse or the same. I have an appt for 2 weeks with her to reassess. She advised me to go back to the GP. I rang GP but can't get appt for 6 weeks (Nov 27th) which is completely hopleless! I told her the GP will do nothing and tell me to take a paracetamol and he can't help. I wasn't this bad on prednisone and I really don't want to go back on it either. It's confusing as paracetamol helps albeit temporarily. GP and rheumatologist at odds over fibromyalgia and PMR. Been a 2.5 yr health battle thus far and still no conclusion.

[123-go]

You are certainly going through the mill, Monkey321! It’s difficult to know where to start here but will begin by asking you to read the following link regarding liquorice supplements (noted from your bio):

healthunlocked.com/pmrgcauk...

Your physio is right to stop the exercise regime as it is exacerbating your symptoms: muscles/tendons/ligaments that are already stressed due to the underlying autoimmune disease will provoke an unwanted response when over-worked.

It would appear that your GP knows little about PMR and it’s management and it doesn’t help that your rheumatologist is dithering. The next link explains a lot and maybe both your GP and rheumatologist need to read it instead of dithering and arguing when all the while you aren’t receiving proper care:

bpac.org.nz/2023/pmr.aspx

I wish you well in finding a solution for your ongoing care. Please come back and look for advice from the experts on this forum.

[Monkey321 in reply to 123-go]

Hi, thank you, I had a look at those links, they were helpful. I actually stopped the liqourice as I was a bit unsure about it. I'm not taking tumeric anymore either as I didn't think it was helping. The rheumatologist has discharged me back to the GP after diagnosing fibromyalgia. I've sent my GP a message through my online patient portal and let him know that I'm at my wits end and waiting for 6 weeks for an appt not on. At my GP practice I can't see any old GP, it has to be the 1 who I'm registered with. Thanks for your reply, much appreciated.

[PMRpro Ambassador]

I thought the uk was in a bad place but I don't think I have heard of a SIX week wait to see a GP there yet!

But if you don't want to go back on pred to see if it works - not sure you have any choice really.

[Monkey321 in reply to PMRpro]

Thanks PMRpro, you're probably 100 % right. I don’t think I have fibromyalgia, or if I do it's coupled with other things. I'm still awaiting HLA-B27 (now been 3 months) and so that may show up something. I really hate prednisone and it's side effects. Tho, equally I hate being in pain 24/7. I appreciate physio was working on my bursitis areas but it seems to have caused more pains. She recommended hydrotherapy st our local pool. We have a big spa in our garage which is fairly deep so could try excerises in there but I find after getting out of spa I'm completely had it, stiff, sore and barely walking. Relaxing must losen up my muscles I guess. I'm really annoyed about a 6 week timeframe. We have a after hours clinic which opens 2 hours weeknights but costs $85. It's not a walk in place, you have to ring, go through a million questions with a nurse who then decides if you are urgent enough to be seen. The nearest A & E dept is an hour away.

[PMRpro Ambassador in reply to Monkey321]

What temp is the spa set at? Too warm would cause all that.

What side effects were so bad? Most of us learn to manage the side effects - and I had some humdingers when I was on methyl pred for a few months but none of them were bad enough to say I wanted off pred as it was the only relief I had, poor though it was with methyl pred for some reason. Never had similar problems with prednislone or prednisone.

[Monkey321 in reply to PMRpro]

Spa is 38-39°. The side effects I had were massively irritable, facial (and all over) body hsir growth, sleeping issues, felt hyped up, headaches. I'm not great at taking pills and I tend to react to new ones eg back in 2022 I took a slow release codeine tablet from GP and was nauseous, dizzy and spaced out all day until it left my system. That same pill my husband has had and he experienced no problems.

[PMRpro Ambassador in reply to Monkey321]

Codeine doesn't do me any favours either. I had similar effects with methyl pred - lovely black beard - but the preds have been fine.

[Monkey321 in reply to PMRpro]

I'm pre menopausal, feel like a frump and so the hair growth really upset me. In the bigger scheme of life. I know my health worries are miniscule compared to many others but hard to see the wood for the trees currently.

[Sharitone]

I don't think anyone ever wants to go back on to pred, particularly not after a long slow process to get off it. But sometimes it is simply better than the alternative.🥴

[Monkey321 in reply to Sharitone]

I'm guessing that's what GP will advise but I'd really like a definitive "you have PMR" first because if he sticks to me having fibromyalgia, prednisone won't help.

[PMRpro Ambassador in reply to Monkey321]

But pred would be a distinguishing test - if it helps, it ain't fibro. You will never get a definitive diagnosis - unless he does a PET-CT which is the nearest to a definitive diagnostic test there is. It is what we need above all else ...

[Monkey321 in reply to PMRpro]

Thanks, i got a message back in my online portal this morning. GP basically said, rheumatologist said it was fibromyalgia, that it's complex, hard to manage, I should take the Celebrex (anti inflamatories), that he thinks an anti depressant may help, that he's ordered bloods and do them today. So pretty unhelpful, tho, he really can't wave a magic wand and fix it. I'm not going on anti depressants though but will do bloods today.

[powerwalk in reply to Monkey321]

Does he mean a very small dose of antidepressant, they use them for pain at much smaller doses for fibro. Some people find they help. I couldnt take them myself but im a bit like you with pills. I have fibro, had it before pmr, having said that when i was started on pred originally, i had no pain anywhere for months, so could never understand that! It came back as the pred was lowered. If fibro is involved it just messes up the picture, hard to get a handle on whats causing what. I hope you find something that helps.

[Monkey321 in reply to powerwalk]

Thank you, GP didn't mention a dosage, just asked if I wanted to go on them. I've messaged him to decline. I was put on pregabelin back in nov 2021 and that is also used for moods, anxiety etc and it was a horrible experience which really played on my mental health badly and it put me off things like that big time.

[powerwalk in reply to Monkey321]

Yes, i didnt get on with that either. It does leave us stuck trying to live with these issues with very little options, medicine wise. I do envy people who can take these things and i do know them, like taking smarties, no side effects. We can only keep battling!!

[PMRpro Ambassador in reply to Monkey321]

Er - if it is fibro, why are they pushing ANTIINFLAMMATORY? Fibro is NOT an inflammatory disorder, so Celebrex isn't usually indicated as far as I know although there is a theory about combining it with an antiviral. The "antidepressent" MAY be amitriptyline - formerly used as an antidepressant but now commonly used for pain control.

Your only hope looks to be a private attempt to be able to trial pred and know one way or the other if IT helps.

[Monkey321 in reply to PMRpro]

Hi, good point there, the celebrex possibly suggested for bursitis. Apparently, if I researched it correctly there was/is controversy around celebrex and in the UK I think it was or is banned. 1 of the anti depressants was amitriptyline, the other I can't remember but it's chemical name is prozac. I looked up both and they're primarily for those with bi-polar etc and have really bad side effects. No disrespect intended to anyone on these medications but I just don't want to take them. I should get my blood results overnight.

[PMRpro Ambassador in reply to Monkey321]

Prozac is the brand name for fluoxetine. The COX-2 inhibitors were the subject of considerable controversy but Celebrex is the ONLY one approved by the FDA in the US and part of the controversy was doctors using it off-label, i,e. where they thought it was useful in other conditions.

I've been on Prozac, many years ago, had no adverse effects and was amazingly effective,

Amitryptiline for pain relief is used at a totally different dose - bit like methotrexate is used in chemotherapy at a far far higher dose. Many drugs can be used like that for different reasons and the effects at the low doses are very different. I'm just explaining the differences, not trying to convert you, but in that light, don't throw the baby out with the bath water.

[Monkey321 in reply to PMRpro]

Hi, in reality, you are right but ad I reacted badly to pregabelin (also a nerve anxiety medication) I'm just not keen. Finally got my HLA-B27 results (apparently they were "lost" in the system), they were negative. The GP comments were "negative which is good news, bad news though is we're no closer to a diagnosis".

[Pixix]

Nasty reply from me, sorry! They could both be right, I have fibromyalgia and PMR…just something to keep in your mind…hope it’s not!