PMR without steroids

[Juliadixon]

Hello. I’m Julia, 76 and diagnosed with PMR 3 years ago. Prednisolone at 15 gms stopped shoulder pain immediately but horrific side effects so had to taper straight off. Is there anybody else who cannot take steroids and how do they cope with the pain!?! I cannot take Ibuprofen as I also have a blood clot on the brain so taking Warfarin. My pain is now so much worse, including my knees and often spreading down my arms into hands and up my neck. Doctor wants to try a steroid injection which he says is known not to have so many side effects, but I’m so frightened as you’re stuck with it in the body for 3 months! Just don’t know what to do.

[SheffieldJane]

Hi Julia, can I ask what side effects you experienced?

I am facing a new drug too and can relate to your feelings. We only really have Pred but sometimes we can find ways to deal with the side effects. If you tell us a bit more, someone may be able to help.

[Juliadixon in reply to SheffieldJane]

Hello. Yes, it started with anxiety, palpitations and panic attacks - I was terrified I was going to die. My brain was confused, couldn’t think straight, concentrate even on what I was saying. The dizziness and confusion carried on the whole time even when I was down to 1 mg! I also had rashes, marks and lumps, trembling visibly all the time, severe fatigue and aching legs. Worst of all, almost psychotic, dark thoughts seemed to change my thinking completely as if I wasn’t the same person. I was so frightened which is why I’m still putting up with the pain I’m in!

Some of these side effects improved as I tapered down but most lasted until I’d after I stopped the steroids completely.

Some of those symptoms that I still have i.e. aching legs, extreme fatigue which comes and goes, were probably due to the PMR rather the Prednisolone, but the whole episode was a nightmare.

Thanks for answering!

[SheffieldJane in reply to Juliadixon]

So sorry! That sounds completely dreadful and very frightening. My early manic energy was actually quite manageable even though it was interspersed with sinking feelings. Panic attacks are the pits. The 80’s were blighted by them due to a stressful job at the time. Maternity leave cured them.

[Hidden in reply to Juliadixon]

Hi Julia, so sorry to hear about your situation and pain levels.

My mum had truly terrible side effects with oral steroids in the past, so when I was diagnosed with PMR 2 years ago I pushed my GP for a rheumatology referral and she had a more informed and holistic approach then my Dr. I'm taking NSAIDs and I'm sorry this route would be very risky for you given the warfarin. You don't mention seeing a rheumatologist? If not, they may have more informed advice on the injection option (such a helpful post from tangocharlie, thank you).

A hospital-based dietician assured me diet has no impact on inflammation, but a nutritionist I then saw privately had a different story, and since making some changes to my diet and adding a few supplements this has also helped pain levels. Diet doesn't fix things of course, but it's good to feel I have a degree of control over managing this horrible condition.

I also personally find acupuncture can help, especially with flare ups, and have really noticed a difference not having access to this during lockdown.

Anyone else out there not taking the prednisolone route for whatever reason (I understand it is around 2 1/2% of us)? Love to hear from you if so.

Good luck with reducing your pain levels Julia.

[tangocharlie]

I posted a very detailed paper all about depo medrone steroid injections last week if you go to my profile then my posts you should find it. They only last 2-4 weeks. I personally had no real side effects and they have worked well for me.

[Juliadixon in reply to tangocharlie]

Thank you so much for this info. May I ask whether you had the injection because of side effects of oral steroids, or were you given the injection first? My doctor told me it could only be given 3-monthly. Was he telling ‘porkies’ because it would be cheaper do you think?

[tangocharlie in reply to Juliadixon]

I hated the side effects of oral Pred so did my research and pushed for the injections. My rheumatologist was also wrong in saying I could only have them every 3 months but I had to prove it by showing him the research - there are links in my post to papers by Dr Dasgupta. I've recently had a bit of a flare which meant I had to have 20 Pred on top of the monthly injection and it reminded me how horrible the side effects of Pred are. Heres is the link to my post

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Juliadixon]

He's telling porkies! That applies for other uses of depotmedrone, not the deep i.m. use in PMR.

[Linny3 in reply to PMRpro]

Are you saying the injections can be given more often than every 3 months?

[PMRpro Ambassador in reply to Linny3]

ncbi.nlm.nih.gov/pmc/articl...

Prof Dasgupta gave 120mg injections every 3 weeks to achieve remission in 12 weeks. Then he continued them at monthly intervals with reducing dose.

[Linny3 in reply to PMRpro]

Thanks

I wonder why more drs. don't suggest this method?

I am emailing this to my doctor.

[PMRpro Ambassador in reply to Linny3]

They seem very unaware of it ...

[Linny3 in reply to PMRpro]

I just heard back from my Dr. and she said not enough studies have been done and the Cleveland Clinic does not ok the treatment. Bummer, I sure would have liked to try it.

[PMRpro Ambassador in reply to Linny3]

Ah-ha. And what other approaches do they approve of? Like leflunomide, hydroxychloroquine ...

However - you could ask her why she thinks it is mentioned in the 2015 Recommendations which are all evidence-based.

rheumatology.org/Portals/0/...

Recommendation 5.

[Linny3 in reply to PMRpro]

Not sure what you mean "you could ask her why she thinks it is mentioned in the 2015 " What is mentioned?

[PMRpro Ambassador in reply to Linny3]

The use of i.m. injections for managing PMR - which was what I understood your doctor refused?

[Linny3 in reply to PMRpro]

Thanks I thought that is what you meant, I couldn't find it in the report you linked. I didn't read it word for word. If you know what section it is in that would be helpful. I will send it to my dr. I was seeing a pain dr. and he was giving me steroid shots (intermuscular) he gave 1 a week for 3 weeks. Would that be the same kind?

[PMRpro Ambassador in reply to Linny3]

I said, Recommendation 5.

Not sure the pain doctor was doing the same thing - will have been lower doses probably

[Juliadixon in reply to tangocharlie]

I’m amazed how much help and information I’ve had from this site and I’m so grateful for the hope! I have printed off the Paper you recommended and have emailed my doctor to see if this is the drug he was intending to use. If so.........!!! Thank you for taking the time and trouble to write.

Acupuncture Is also an interesting idea as I have had it successfully in the past for other reasons. It hadn’t occurred to me to try it for the PMR pain. I didn’t even think myself of not wearing a bra and I’ve now found how much one shoulder in particular is so much better without the strap!

So thank you everyone sooo much for all your tips, help and sympathy! Julia

[PMRpro Ambassador in reply to Juliadixon]

There are a lot of people who tried acupuncture unsuccessfully - but possibly worth a try.

[belgique]

Hello Julia. I have PMR, and don't take Prednisolone. I'm so sorry to hear that you've suffered so much. I was first diagnosed with PMR in 2012 and was offered the steroids. I had done much research, so knew about the side effects. My doctor was in agreement with me when I asked if I could think things over about the steroids. I became fairly desperate because of the severe pain and disability, and I was about to, reluctantly, decide to take them. Then a friend introduced me to an acupuncturist (traditional acupuncture), who helped me enormously. (I did not take the steroids). After about 8 sessions, (by now about three and a half months into my PMR journey), I definitely started to improve. I still had pain, but it was bearable, and I was gradually able to do more things. She was also very good at giving me good advice about pacing myself etc. I then realised that I had to reduce a lot of the activities I had been doing, including doing less exercise than before. (I had always been quite a physically active person). After three and a half years, the PMR burnt itself out, and I returned to feeling quite well again. My PMR did return last November (2019). Again, I had acupuncture. The PMR seemed even more severe than before, but I realised that I had had a very busy year, and know that I had pushed myself physically in addition to having had quite a lot of stress. The PMR got a little bit worse each day for about three and half months, after which things started to get a little bit better each day (after several sessions of acupuncture). Of course the acupuncture had to stop during lockdown (but I've recently started up again), but nevertheless, I rested a lot in the garden, in the sunshine, and now I feel much better. I take vitamin D and calcium (prescribed), and I also take magnesium, which I cleared with my GP. Things really are much better. I would suggest that if you're a very active person, it would be good to reduce your activities. I do wish you all the very best, and hope that you'll feel much better soon. I really do sympathise. Sorry this is a bit long!

[Hidden]

Hello, be aware of Giant Cell Arteritis if you're deciding against steroids. I originally was started on 15 mg of Pred, but a soon as I'd tapered to 8 mg the GCA kicked in. Tender head, painful jaw when eating and opening mouth wide and top teeth at the back ached. I'd be too frightened not to take pred in case of blindness that occurs with GCA. I have had horrid symptoms while on pred since Dec 2019. The shakes, dark moods, blurry vision, fat face, and can't control hunger. I think we have to suffer to get a grip on this disease. Just be aware of symptoms of GCA.

Best wishes

Anne

[tangocharlie in reply to Hidden]

Am replying to you but it's probably really a question for PMRPro or other expert. I have often read that uncontrolled inflammation can lead to GCA but is there any evidence of that? Someone asked this in a Facebook group recently and don't know the answer. GCA can occur on its own without PMR and also happens to some people even when they are already on steroids. I can see symptoms need to be controlled urgently if GCA rears its ugly head to prevent damage but can it be said that uncontrolled inflammation is a cause?

[PMRpro Ambassador in reply to tangocharlie]

Dejaco et al mention it in the introduction in this paper:

academic.oup.com/rheumatolo...

"GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA, particularly if left untreated [2]."

Ref 2 is Dejaco C, Duftner C, Dasgupta B, Matteson EL, Schirmer M. Polymyalgia rheumatica and giant cell arteritis: management of two diseases of the elderly. Aging Health 2011;7:633–45.

Unfortunately it is behind a paywall! A mere $67 ...

[Juliadixon in reply to tangocharlie]

I don’t know but I do worry about it. Staplehurst has said GCA started when she had tapered to 8mg Pred, so was still on steroids.

[PMRpro Ambassador in reply to Juliadixon]

It really isn't a common occurrence but all PMR patients need to be aware. Just in case.

[Hidden in reply to Juliadixon]

Personally Julia I think I had GCA before my diagnosis of PMR. I had a weird headache that started at the same time during the night, it would start off with a tingle on the right hand side. Shame I wasn't put on a higher dosage than 15 mg like so many are. Two friends, one woman, one man were started on 70 mg for PMR, they've had no sign of GCA. I only have the sight in my right eye (nothing to do with GCA) so naturally am concerned. Even though I'm on 15 mg currently, I still have a slight tender head still, and that was the same on the high dose too...maybe it just lingers. But all in all I'm feeling so much better now I've started to taper.

You take care

Anne

[Juliadixon in reply to Hidden]

Thank you for your warning and I am really worried about it developing into GCA. It does seem ‘unfair’ for it to come on even when you are already taking steroids! Presumably you have had to up the dosage again and are having to put up with more horrid side effects. It was the brain/mental/psychotic ones I couldn’t stand. I do hope things begin to improve for you soon - and for all of us! Julia