Steroid dependency? Tapering problems.

[Enemyofthestate]

Diagnosed with PMR 6 years ago and been on steroids ever since. Been on 4 mg pred for last couple of years but unable to reduce as symptoms return at less. I eventually paid for a referral to rheumatologist who has just siad i no longer have pmr but steroid dependency where dropping can have similar feelings of stiff joints/fatigue! Trying to wean myself off - be warned i think my uk doctors practice let my meds/condition drift on far too long.hope to get off pred soon

[PMRpro Ambassador]

And HOW does he know that it isn't PMR? PMR often lasts far longer than their claimed 2 years - but they shut their ears and eyes to it. It seems to be an English-speaking myth though - people require low doses of pred for a long time here and the rheumies accept it.

[adeorjan in reply to PMRpro]

Thanks for your comment. She actually stated it is very unlikely i still have pmr after 6 years and as i only have mild stiffness and aches without ANY joint swelling when tapering, I just need to wean myself off pred gradually by slow tapering and ignore the stiffness. I only shared this in case it helps anyone else to know pred withdrawal symptoms can be similar to the original pmr symptoms according to my Rheumatologist. I wish I'd known before because my non rhemi uk docs have kept me on drugs without properly reviewing my need for this permenant predisolone until i pushed to see the specialist.

[PMRpro Ambassador in reply to adeorjan]

You shouldn't have joint swelling with PMR - joint swelling suggests and inflammatory arthritis, not PMR. We have several on the forum with PMR who have had it well north of 6 years.

[Enemyofthestate in reply to PMRpro]

Thanks, i dont have joint swelling and i was surprised she even mentioned that as a possibility. I have the common pmr stiff neck shoulder and hip pain returning. Rheumy says steroid withdrawal can cause these same original symptoms so guess i'll just have to persevere with very gradual reduction of steroids and see what happens. Now down to 3mg per day but she is saying i have steroid withdrawal symptoms not PMR after all this time but according to comments on here I'm not so sure now. Anyway, there are lots much worse off than me but I'd hoped the Rheumatolagist who is the same one i was referred to in the beginning 6 years ago would know her stuff. Maybe she needs educating on the length of time pmr can last? Thanks for taking the time to comment.

[piglette]

Another doctor who has a crystal ball.

[adeorjan in reply to piglette]

Thanks for your comment. After 6 years i had to push my docs to let me see a specialist who actually stated it is very unlikely i still have pmr after 6 years and as i only have mild stiffness and aches without ANY joint swelling when tapering, Apparently i just need to wean myself off pred by slow tapering and ignore the stiffness. I only shared this in case it helps anyone else to know pred withdrawal symptoms can be similar to the original pmr symptoms according to my Rheumatologist and to be aware you can get stuck on drugs unnecessarily. I wish I'd known before because my non rhemi uk docs have just kept me on repeat drugs without properly reviewing my need for predisolone intake until i pushed to query how i get off it.

[piglette in reply to adeorjan]

PMR is a disease of the muscles not the joints, if you have been told that. Basically you should be given steroids for the PMR, in addition vitamin D with calcium is recommended. What other drugs are you stuck on for PMR?

[Enemyofthestate in reply to piglette]

Thanks, although i referred to joints its actually pain and stiffness in the shoulders, neck and hips returning when i reduce the prednisolone steroids that i've now been taking for over 6 years along with omeprazole for tummy protection and vit D. Rheumy says the steroid withdrawal causes these same symptoms so i'll have to persevere with very gradual reduction on steroids and see what happens now down to 3mg per day but she is aying its withdrawal symptons not PMR after all this time but according to comments on here I'm not so sure. Anyway there are lots much worse off than me but I'm starting to doubt the Rheumatolagist who is the same one i was referred to in the beginning 6 years ago.

[piglette in reply to Enemyofthestate]

Steroid withdrawal symptoms tend to start pretty well immediately on reducing and then going away after two or three days. Something like paracetamol helps. A PMR flare does not normally happen for at least a week often longer. I find the symptoms totally different, in my case anyway. I have got through four rheumies, two private and two NHS. One NHS one was good and the others were rubbush. One was positively dangerous in my opinion!

[Enemyofthestate in reply to piglette]

Thanks piglette, all the best for a better 2024.

[Polygolfer]

Thanks for bringing this up. Refreshing alternative view. Quite a lot of literature on Prednisolone dependency on Google, all very interesting. Because PMR varies so much from person to person it must be very difficult to determine what exactly is happening but always good to keep an alternative perspective like yours in mind! Getting rid of any drug use should be the ultimate purpose, if at all possible!

[Floridafan]

I have been taking Pred for five years now and have been stuck on 2mg since March. I keep trying to reduce using the slow method recommended on the forum but end up back on 2 mg due to aches in the usual places. I never considered that it might be steroid dependency. I am speaking with my GP in a couple of weeks so I shall mention this to her and she what she says. Thank you for this information

[ImC_]

Hang on - when we say ”steroid dependency" do we mean something other than ‘adrenal insufficiency’? The latter surely being normal in that it is something we have to somehow push through - so long as we are on enough Pred to control the PM - in order to get the adrenals to make natural cortisol in place of the reduced artificial cortisol?

If PMR symptoms return at a low dose doesn’t that just mean you’ve gone just that wee bit beyond the dose that’s the lowest to control the PMR, and therefore you found, in the dose before the symptoms resumed, your ideal dose?

If adrenal insufficiency symptoms appear at a low dose you have to try to plough on as there’s no getting round it? There's a lot written here about 'waking up' our adrenals.

Good point about not taking drugs unnecessarily - of course. I skip the omeprazole by having thick plain yoghurt with the steroid - at least, that works for me.

[PMRpro Ambassador in reply to ImC_]

Quite ... But there is a breed of doctor that is so terrified of pred that they believe it is like a drug and we WANT to be on it as if it were heroin.

[MiniSpec]

I've been on Pred for 13 years now, and had PMR for 14 years. I saw a rheumy for the first time in thirteen years in May of this year. She told me straight away that I didn't have PMR any more, but that I'd become steroid dependent. When I asked her how she knew I didn't have PMR any more she said it doesn't last that long, so therefore I must be steroid dependent.

I can't say as I agree with her, but she's the one getting paid for her opinions, not me. So I tried to reduce from the 3mg per day I was taking at the time, to 2mg per day. I used a very slow taper to get to 2.5mg and then a further slow taper to get to 2.25mg per day.

I noticed that I could still function at 2.5mg but at 2.25mg I started to feel the PMR symptoms returning, i.e. neck and shoulder stiffness, lower back pain, etc. However, I persevered and in September I managed to actually get down to 2mg per day!

That lasted for 4 days, and on the fifth day I woke up to find my neck and shoulders completely frozen with stiffness and pain. I was unable to function as a human being, so I took 4mg that day, and over the next couple of days increased my dose up to 12mg per day. After a week at 12mg I dropped back to 4mg as the stiffness and pain were gone.

I next saw the rheumy in October and told her of my experience when I tried to reduce the Pred. I told her that from my personal experience I was sure the PMR was still active as it had come back with a vengeance when I dropped to 2mg. She poo poo'd what I said and still insisted that the PMR was gone, and that I was now dependent on the Pred.

Well, so be it. If I need the Pred in order to function as a human being then Pred it is. I'm now in my 70's, and don't really care whether I'm an addict or not. As long as I can live my life without the stiffness and pain I'll happily take whatever I can get.

As I was leaving the consultation with her, I asked her about people who get PMR when they're younger than 50. She then spouted some scientific stuff about PMR not being PMR if you're younger than 50, but being something else.

So I can only suppose that as far as she's concerned, when people reach 50 a cosmic switch gets thrown somewhere so that we can then get PMR, and by the same token, after a set amount of time, PMR switches off, irrespective of the victim, but leaving us all with a craving for Pred.

Hmmmmm! In future I might as well consult the fairies at the bottom of my garden, they might make more sense than that! Happy New Year!!

[Pr0jection in reply to MiniSpec]

I'm with you on this. I've just reached 80, have been on 7.5mg for 3 years. My slow tapering to 6.25mg early this summer resulted in an uncomfortable flare so I've gone back up to this dose. My rheumatologist says that there should be no side effects on this dose if all the right precautions are taken. However, as he's a bit of a maverick I do tend to take some of what he says with a pinch of salt. My mother had PMR from her mid 70's until she died at 91 but by then she had other ailments. Her GP constantly tried to get her to come off steroids with the result that she yo yo'd on them for many years. I really don't want to go through all the pain I had at the beginning, before diagnosis, if I can have a reasonably active life on a low dose. I intend to continue to taper slowly, maybe start again after Christmas, and I will try to get to 5mg by the end of the summer. If I have to stay on that dose indefinitely then so be it. Happy New Year to you.....

[PMRpro Ambassador in reply to MiniSpec]

Nothing scientific says you can't have PMR under any given age, And anyway - there is a scientific paper where the PMR patient was 24.

pubmed.ncbi.nlm.nih.gov/967...

I just quoted a GCA patient of 37 - the pathologist confirmed THAT. And we have several who had PMR confirmed by PET-CT. Won't get more scientific than that.

All that all shows is that SHE doesn't have the slightest clue about science - because no decent scientist would ever say never ...

[cranberryt]

If the pain is due to steroid withdrawal it will usually go away in about a week. Pain that persists or increases after about a week indicates the disease is still active. It’s really hard to find a rheumy who really understands PMR. Especially in the US where they believe you have to be older than 50 and that it is gone in a year. Reducing beyond what is necessary usually results in major flares that take even more prednisone and years at higher doses than just remaining at the lower doses. (diagnosed at 48, 4.5 years ago, at 1.5mg and have seen 3 unhelpful rheumatologists)

[samitzi in reply to cranberryt]

A week? I have had PMR for almost 10 years and kept comfortable at 5mg of preds, pain returning whenever I tried to taper to less. I changed rheumatologists last spring; he said my PMR had resolved, to taper to zero and gave me a program to follow. As I reduced the pain returned more severely and now, not having had any preds for a month I am in constant, severe muscle pain in all the usual sites and new ones I’ve not experienced before, eg lower arm muscles. However, neither strong pain killers nor celecoxib have helped. I am now on synthetic morphine skin patches, 10mc, while waiting for a follow up and the results of the battery of blood tests I had after I had finished the steroids, but they are not helping either. What’s going on and has anyone else had a similar experience?

[DorsetLady PMRGCAuk volunteer in reply to samitzi]

I changed rheumatologists last spring; he said my PMR had resolved,

He can’t know that.. the only true way is to get to zero pred and stay there for weeks/ months with no return of symptoms..and from why you say that hasn’t happened. So that scuppers his theory.

.. and the steroid withdrawal that cranberryt referred is when you reduce from one dose to a lower one.. and differentiates it from a flare which may take longer to materialise.

..and in answer to your question, yes others have been ‘forced off’ pred only to find their PMR is still very much alive and kicking despite what the doctor may think/say.

Hopefully the blood tests along with the painkillers not working will make rheumatologist think again.

[PMRpro Ambassador in reply to samitzi]

He was rather wrong about the PMR having resolved - there are many who believe it lasts 2 years and then spontaneously goes poof and disappears. Rubbish ...

I find it amazing that they prefer to dish out NSAIDs and opiods rather than allow a patient to remain on a low dose of pred. It is an English-speaking problem though - in mainland Europe it is accepted that PMR lasts as long as it lasts and many patients need to remain on a low dose of pred indefinitely.

You need to find a better doctor who treats the patient and their symptoms and not his imagined format of PMR. There is a small percentage of patients who have a long form of PMR. At 10 years you are probably one of them.

[Enemyofthestate in reply to PMRpro]

Dear Pmrpro,I'm re-reading all the helpful comments in this thread before going to see my GP as I have been trying to persevere with reducing my pred after the rheumy told me to saying I can no longer have PMR after 7 years and any symptoms are likely due to pred dependency/withdrawal not actually PMR! I do not believe her and feel I must still have pmr with my very stiff neck/shoulders, 4am hip pain, reduced mobility after sitting still feeling 92 at age 63. Currently trying to cope on 1mg pred having gradually tapered. However, my last esr test result with these symptoms was via a message that i do not have inflamation ? Is it possoble to suffer pmr without a raised esr which i think is a measure of inflammation? Thanks.

[PMRpro Ambassador in reply to Enemyofthestate]

"I can no longer have PMR after 7 years" - well I still have it after nearly 20 years!! And my rheumy is a world-leader in the field. There are several on the forum who still have it after 10 years - and the numbers are growing. No other autoimmune disease comes with a limited life-span, why should PMR?

What is more to the point - if a low dose of pred manages your symptoms and allows "normal" life, what exactly is wrong with that? If you are pred-dependent. that means your adrenal function is compromised and you need pred. If she is trying to take that away from a pred-dependent patient - her words not mine - then she is literally dicing with death if you were to have an adrenal crisis.

And yes, some people don't develop the acute phase response that raises the markers, some of us don't go out of normal range even before diagnosis, my ESR was 16-18, in range sp no-one raised an eyebrow, but very raised for me.

[Enemyofthestate in reply to PMRpro]

Thanks very much for responding so quickly and sorry if my ignorance about this condition caused any offence. I have been relying on so called professionals but it seems my rheumy needs to update herself and get some further education about PMR and its potential lifespan and also that, despite the esr result, it cant be relied upon either as a pmr confirmation. I've always been under the impression long term steroid use is bad as it can lead to problems, but again this may also be incorrect. I probably just need to up my pred a bit more to a level that works fully and live with that indefinitely. So sorry to hear you've been battling pmr for 20 years. Will discuss everything with my GP. Best wishes and thank you so much for helping everyone via this forum and all to everyone else.

[PMRpro Ambassador in reply to Enemyofthestate]

Wasn't you - it was the doctor who said it!! Those sort of doctors are the bane of our life! Long term steroid use isn't good but in the absence of an alternative, it is the best we have and we must make the best of it. Life with PMR and without pred isn't very good either - immobility leads to all sorts of problems, painkillers are useless and I had problems with PMR that a lot of doctors would blame pred for and I had never taken a single tablet.

I don't really battle it - I accommodate it and have a life. I'm very lucky in having an amazing doctor who is an expert in the field. And it has brought me some wonderful friends, online and in person.

[DorsetLady PMRGCAuk volunteer in reply to Enemyofthestate]

I don’t believe her either.. and agree with PMRpro comments so won’t repeat.

[samitzi in reply to samitzi]

Update: spoke to my very sympathetic GP yesterday who said I need to be back on steroids. He is going to contact the rheumatologist as a matter of urgency but in the meantime I have made the decision to restart prednisolone anyway because I can no longer cope with the constant pain and debility. After just 24 hours the pain has subsided slightly so here’s hoping.

[PMRpro Ambassador in reply to samitzi]

Good!

[samitzi in reply to samitzi]

Further update: saw a private rheumatologist last week who confirmed my symptoms were PMR (as if I didn’t know!), to taper the steroids until I find what I am comfortable on and stay with that, for life if necessary. She didn’t take much notice of my esr levels, accepting they don’t tell the whole story. She also suggested, with the NHS experience I had last year, my GP should be able to manage my PMR. How refreshing. Going to see the NHS consultant tomorrow who has made his mind up I don’t have PMR and shouldn’t be on steroids. Hmm, should be fun!

[DorsetLady PMRGCAuk volunteer in reply to samitzi]

Well in that case, and from what you said about him previously and so long as he takes notice of second [privately seen] Rheumy’s comments I’d stick with your GP. And ditch the NHS Rheumy after tomorrow’s appointment.

[PMRpro Ambassador in reply to samitzi]

I agree with DL's analysis! Who is this private rheumy - she needs encouraging and may be a useful addition to the list, Rod Hughes must be overloaded with our recommendations ...