Stuck, unsure what to do..

[August7]

Bit stuck so apologies welcome advice please. PMR/PsA, recent flare up PMR, and on reflection best ever response and relief of sx was when on 15 mg Pred.

Followed helpful flare up protocol and have reduced from 12.5 mg back down to 11 mg, just above dose I flared on. Awaiting MTX injection start next week ..sorry to repeat if you are aware.

Awful pain and stiffness again, ramped up last 48 hours, had to get up from bed at 4.30 am as pain too much, but equally moving is horrendous. Same old shoulders, spine, hips,some neck.

spoke to Gp 48 hours ago re: MRI, some C6 impingement of nerve by bone.. have to see him next week, but not a factor with current sx. Nice doc and I discussed with him analgesia for the PMR, have found Diclofenac 75mg o.d. helps but try to take alternate days, he is concerned re s/e, however Pregabalin gave me palpitations etc so difficult. I really do not know what to do, Rheum app is not until another 6 weeks (and as I have read on here MTX is not likely to offer pain relief immediately if at all. I am finding it increasingly difficult to do day to day tasks which is a strain and trying to hide the pain from my son is hard. I have never felt so vulnerable in my life. So after all that ridiculous waffle, my query is should I put the Pred back up to 12.5 and stay on that until I see the nurse for the MTX. I read NICE/CKS guidelines and I can see it says that some of us may need longer to reduce Pred. For the record I do not want to be on it but recognise it is needed…rosy red hot facial cheeks at 4.30, outward show of inflammation?

[DorsetLady PMRGCAuk volunteer]

Sensible to go back to 12.5mg -and not everyone can follow the suggested taper in the guidelines -and there is a caveat about reducing more slowly - but some doctors don’t read that bit!

Good luck with MTX… but that can take a while to work..

[August7 in reply to DorsetLady]

Thanks for getting back to me, will go back to 12.5

[piglette]

PMR is life changing. The trouble is we think we should be able to carry on as we did before. You should have enough medicatiin to make you feel human again though and it should make you feel at least 70% better than you did. Are you saying you were given Pregabalin for the PMR or was it for something else? Also why are you taking diclofenac? You should not really take an NSAID for any length of time. Are you taking prednisolone? You don’t mention it.

[August7 in reply to piglette]

Hello, yes I’m on Prednisolone since Feb 24. Started by GP at 15 mg for ? PMR, long journey. Have seen Rheum, he thinks crossover with Psoriatic Arthritis. Wants me on MTX as feels dose Pred too high and MTX preferable. Twice I have managed to get down to 9 mg but flared. GP wanted me to try Pregabalin for the pain..I don’t want to take analgesia if I can help it. Had years post brain tumour with analgesia and brain fug so used to pain and normally cope. It’s all been a bit of a struggle getting any support. It’s just me and my son so life has always been busy and up until last year I was also working. In the space of a year Ive lost my job, source of income and become a virtual recluse. However I need to just get some kind of relief from the pain, stiffness I can cope with and try to ease out. The fatigue is dire and recent add in for fun of ? Sacro ileac joints scuppering mobility. Yes you’re right re: NSAIDS, desperation is all I can say. I try and only take one 75 mg every other day.

[PMRpro Ambassador in reply to August7]

They keep SAYING MTX is preferable - which would be all very well if it worked as reliably as pred does in managing PMR. And it doesn't. If it did, surely they would use it from the outset? And they don't.

[August7 in reply to PMRpro]

Very true, but I feel if I don’t take it they will not be bothered with me and then what happens

[PMRpro Ambassador in reply to August7]

Oh yes, you need to try it. It IS the first line for PsA so there is a logic there. And I assume they are encouraged to try MTX first - you can escalate but it doesn't work as well if you start with a biologic and it isn't working, then you have to go backwards.

[August7 in reply to PMRpro]

Onwards then and fingers very much crossed!!!🤞😉

[piglette in reply to August7]

Ah, so you are taking pred. As mentioned the pred is the all important drug for the PMR and backed up by the Methotrexate which may or may not work for your PMR. I assume the Pregabalin was not for the PMR??

[August7 in reply to piglette]

The GP said to try it for the PMR pain. I was on 9 mg Pred.

[piglette in reply to August7]

I despair of doctors. I worked with the pharmaceutical industry for over thirty years and it was a standing joke how uninformed doctors were regarding pharmaceuticals. The drug companies bent over backwards to try and tell them about new drugs. We decided that the doctors had trouble actually reading!!

[August7 in reply to piglette]

Wow!!!! That’s scarey!

[piglette in reply to August7]

They have trouble writing too, but luckily they got rid of the handwritten prescriptions and a computer printed it for them!!

[August7 in reply to piglette]

Is there any hope?🙄

[PMRpro Ambassador in reply to August7]

For some, not a lot!!

[PMRpro Ambassador in reply to August7]

Pregabalin is best for nerve pain, PMR is NOT nerve pain. I agree with piglette ...

[August7 in reply to PMRpro]

I didn’t take it anyway, the info that went with it did not sound as if it would be good for me!

[PMRpro Ambassador]

IF MTX will work for YOU - and whether it is the PMR or the PsA (I assume you mean psoriatric arthritis?) there are no guarantees - it may take a few months. In the meantime, the pred is there.

The pain you are experiencing is quite early in the night for PMR - when does it start? When you were on 15mg, did the pain relief last the full 24 hours? And WHERE exactly is the pain?

[August7 in reply to PMRpro]

The pain nags late evening but wakes me up around 5 -5.30 am. Awful bilateral shoulder pain, hips, spine predominantly. I also get problems taking a deep breath with the ribs when it’s really bad, noticed hard to use turbohaler for asthma when it’s playing up.

On the 15 mg Pred it was almost miraculous, shoulders relieved of pain, walking ok, but told to come down by the Rheum. I’d been on it 2 weeks at that dose.

Yes Psoriatic Arthritis crossover Rheum feels.

[PMRpro Ambassador in reply to August7]

Ah, that's more usual, you said you were up at 4,30 because of the pain, suggesting it had been going on for a while. 4,30am is when the pain starts in PMR.

[August7 in reply to PMRpro]

It’s comforting in one respect. I think the scepticism re the PMR diagnosis initially by some clinicians was troubling.

[PMRpro Ambassador in reply to August7]

They often seem to expect it to be a particular pattern and it isn't - and you can have PMR PLUS something else. They do get easily confused sometimes!!

[August7 in reply to PMRpro]

😂

[August7 in reply to PMRpro]

And CRP result just in at 14mg/ml so confirms the flare big time as norm. 0-5. At least I know I’m not totally gaga!

[PMRpro Ambassador in reply to August7]

Forgot to say - 2 weeks at 15mg is not long enough. They are in such a hurry and end up with the patient taking more pred overall.

[August7 in reply to PMRpro]

👍

[diana1998 in reply to August7]

2 weeks not long enough.

[August7 in reply to diana1998]

For sure..but how do you put that to the experts….

[diana1998 in reply to August7]

After being reduced far too fast from 25mg to 13 over a matter of weeks in 2016 and suffering a huge flare, my private rheumie said I could self administer. I did this successfully using the experts on this forum. It's been a long slow journey but no flares since. My GP prescribes on request. But every case is different.

[Pippah45 in reply to diana1998]

I was also lucky enough to be signed off to my own devices and avoid the rush to stop too quickly. Doctors really don't understand PMR. I also didn't want to take steroids but realised there is no other option. The great people on here have saved me so many times. I am currently coping with a flair at 2 mgs just when I thought I was nearly there! It is a Marathon illness not a sprint and flairs should be avoided! Good luck.

[diana1998 in reply to Pippah45]

I totally agree. I was on 2mg for 18 months as the time to reduce was never right. But when I reduced to 1.5mg on January 1st it was really easy. Might consider 1mg after Easter. Slowly but surely.

[August7 in reply to diana1998]

It is so reassuring to hear the time spans mentioned for reducing. I’ve been on Pred now for a year and really I don’t seem to have made any progress in real terms re: dosage, but your experiences give me hope and the experts advice is so much appreciated.

[August7 in reply to Pippah45]

Thank you, I hope the fickle flare settles soon! The very nerve of it raising its head when you’ve done so well! Good luck to you too☺️

[August7 in reply to diana1998]

Well done…really positive to hear, thank you

[Obscureclouds]

From all I’ve read Pred would seem to be your best bet rather than waiting for MTX to kick in. MTX does seem to work well for some people with PMR but i have recently done a lot of research into it for LVV before opting not to take it at this stage. I understand it to be the cheap option for psoriatic arthritis (if you also have that) again it may work well for some but did nothing for my granddaughter except give her griping stomach pains, severe headaches and recurrent throat infections (as it did for her mother a few years before). All this went away when she was finally prescribed Imraldi/Adalimumab instead. Not sure how that would work with PMR and Pred. But if MTX causes you any problems better to flag them up with your GP/Consultant asap rather than soldiering on. That said I do hope MTX will work well for you as you won’t know until you try it. Good luck

[PMRpro Ambassador in reply to Obscureclouds]

No option for a biologic for PMR in the UK. But i suspect you have to fail MTX before getting something else for the PsA and that would probably be Humira which is cheap now. But it does nothing for PMR.

[August7 in reply to PMRpro]

Do they not prescribe biologics here in the UK then? I thought it was held back due to the expense. Im not convinced of the PsA, but the sx are certainly getting worse as the Pred is reduced.

[PMRpro Ambassador in reply to August7]

They prescribe biologics for inflammatory arthritis - just not for PMR which isn't an arthritis. Actemra will be handed out without limit if the diagnosis is inflammatory arthritis - but not for PMR and GCA.

[August7 in reply to Obscureclouds]

Thanks for that, I really do not want to take it but the pain has got so bad I feel I have no option and that it will be perceived as negative if I don’t. However if I get a raft of s/e I shall stop, I understand you can just stop without any problem. But I shall keep what you’ve said in mind. Thanks again.

[Sandmason]

I came to a major important conclusion last night. I'm free! I am on my own, accountable to no one for my taper. I will just stop trying to taper until I can. I'm 73 and aware that I may be on pred the rest of my life.

Started pred Feb 2023 at 20mg. No rheum will take me, even my former PCP refused to diagnose and treat my PMR, so terrified of steroids!!! (LOLOL)

I dutifully managed to drop 1mg a month average, using quarter milligrams. (I do have a brilliant retired internist in my home.)

I got so determined to get onto a low dose that I really sabotaged myself! When I hit 3.5 last summer I thought I was on a roll. BUT, inflammation started in my colon and I've had a nightmare since then. I should have just gone up to 10mg.! The Cipro antibiotics gave me severe tendonitis in my knee. Thinking I was facing an immediate sigmoid resection, I stupidly dropped to 2mg for 10 days trying to have stronger tissues. All hell broke loose.

So, feeling guilty, I went back up to 10mg for a week. It's my body. Nobody has to know to criticize me. Every trace of the diverticulitis is gone after 3 months of hell.

Now here I am again trying to taper to 5mg? Nope. The tendon in my knee replacement blew up 2 days ago, after a month of trouble, and I had to go through all kinds of medical care again to figure that out. Last night I said, "The h*ll with it" and took an extra 5mg. Today I can walk again, yesterday was terrible. So if it takes 10 or even 15 mg to knock back inflammation I am going to do it.

(Caveat, my daughter is an infectious disease doc who is also terrified of steroids. I finally sent her a graph of my 2 year taper and I think she's starting to get my long haul.)

I got a new doc who listens and works with me to reason things out. Direct Primary Care is great!

[August7 in reply to Sandmason]

Full respect…what a journey you have been on. Wishing you all the very very best☺️

[PMRpro Ambassador in reply to Sandmason]

Cipro and pred = bad news for tendons.

It is all very well to be so terrified of pred but for some of us it gives us our life back while we are here. We will be a very long time dead and, frankly, I want my time here to be bearable and not haunted by thoughts of suicide. I had 5 years of PMR undiagnosed and with nothing to make life less painful - I have no desire to go there again.

[Sandmason in reply to PMRpro]

Boy I sure hear that! Spot on. We will all be dead for a very long time. I cannot imagine 5 years of untreated PMR. People are terrified of all kinds of nonsense, but Cipro outranks prednisone in caution, to me.

Annoyed that I missed all the things to do in winter here and I would be camping right now if I could hitch up and go. The whole diverticulitis clusterf* almost got me cut open when I could have just upped my dose.