I was instructed to come off pred in rather a hurry when I got down to 1.5mg. I negotiated a couple of weeks to do it and I finally took the last little bit a week ago.
However, for some months I have been gradually collecting painful muscles and tendons, now including the front of both shoulders, lat on one side only, now very stiff sore knees, and all sorts of stiffnesses and aches in the hips and thighs. I'm proper fed up to tell the truth.
My question is: is this likely to be the result of coming off steroids after 3 years of significant doses, or should I be considering something else? If it's just a case of ploughing through it, how long can I expect it to go on? I know you haven't got crystal balls, but maybe other people have a similar experience?
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Sharitone
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Because I have had TCZ for 15 months now, and in January my CRP level was very low. So I can't need pred , can I? If I dare to mention adrenals to any medic, I get a withering look!
Why were you told to come off in a hurry at 1.5mg? Even 1/2mg pred can be enough to keep the inflammation created by very low disease activity under control. Take the pred away and over a period of weeks, even months, the dripping tap of inflammation builds up until it is enough to cause symptoms. But I'd say the PMR is still active and the inflammation is slowly building up. Once symptoms start to reappear it is time to slow down. Leave it long enough and you may well be back where you started.
Because my CRP was <1 in January, and the TCZ is supposed to deal with the disease. And I think 'Get off the steroids' is the default position. I am pleased to be off steroids, but I would rather have taken it more slowly. I will have to consult GP, I think🙁. If he thinks it's PMR, then he can refer me back.
I wouldn't mind the pain so much if at least the fatigue would recede a bit!
The CRP falls to low levels because of the way Actemra works - it blocks the receptors that IL-6 needs to attach to to create inflammation. And TCZ does NOT deal with the underlying autoimmune disorder that creates the IL-6, that continues in the background and if your symptoms are being caused by the other potential mechanisms for inflammation you continue to need some pred. If you stop the TCZ, then the symptoms can return once it is out of your system which happens in 3 months at most but it can be sooner.
I wish I knew why so many doctors think low CRP and ESR means the PMR/GCA is gone - they can't be used to monitor when using TCZ. DeepThought2 says his specialist uses calprotectin.
Yes, thank you. I'm endeavouring to learn that! Is there any known treatment other than pred for the other inflammatory mechanisms?
It's frustrating not to be able to discuss these things with the clinician. I recently had a call from someone in the nodule clinic who was very prepared to discuss everything. It was lovely!
Not really - that's why pred remains the mainstay. There will probably be a biologic but that would mean 2 or 3 which would be astronomically expensive and they rarely use 2 biologics together except for two very different needs like TCZ for GCA and denosumab/Prolia for osteoporosis for example.
I had an appointment with my rheumy the other week and HE said how nice it was to discuss everything including research with a patient, Most aren't interested or knowledgeable enough. And we get long appointments - at least 1/2 an hour,
We get hustled out the door when our 15 minutes are up! If I dare pretend to know anything, eg that omeprazole can have a deleterious effect on bones, I get metaphorical cold water poured all over me. But it even says that in the PIL!
Just adds to the injury of being weighed with your shoes on, and told you're a couple of kilos heavier than you know you really are!
I was also told to come off prednisolone rapidly. I had been suffering from tendon problems for a long time while taking it. After 2-3 weeks of zero I might be improving a bit. My scrubbing mould off walls ability (tendonitis in both shoulders) seems to building up quite well. My sitting cross legged on the floor skills (gluteal tendonitis) also seem to be improving. Fingers crossed.
You have described a very similar situation to mine. I came coming down slowly from 4mg to 3.5mg. It has taken me weeks to finally accept that 3.5mg is not enough. 3 days of 4mg and the aches I was learning to tolerate have gone. Don't leave it too long to give a dose of steroids a try...a low dose long-term is really quite harmless, especially compared to what can happen if you stay in denial too long. Good luck!
the expert advice on here is to take the pred according to symptoms...some of us don't get changes in the ESR etc...and if you do it can be delayed by weeks...if it feels like PMR treat it as PMR...my doc never orders blood tests...except as an annual check up on other things...don't suffer unnecessarily
I reached zero pred last summer, but after 6 months or so the aches in my shoulders and hips reappeared. My Rheumatologist has put me back on 5mg for a few months and then I'll start the slow taper again. From the low doses, I tapered at 0.5mg / month, taking 10 months to get from 5mg to zero. I'll do the same again this time.
I imagine TCZ would have continued to keep the inflammation under control, as it did for those 2 years, but who knows? It enabled me to reduce the pred to zero, but that coincided with the end of the TCZ ration, so I was left with nothing. My Rheumatologist started me on MTX as an 'insurance', but the PMR aches and pains still surfaced. Hence the return to pred.
I would try TCZ again without any hesitation, if the NHS rules change.
I would sign any number of petitions to get TCZ authorised for people who have been on significant amounts of pred for a long time. It's bonkers that they can't have something that works! It may be expensive, but not as expensive as other treatments
I've no deadlines set, apart from the advice from my Rheumatologist to try in 3 months and see what happens if I start to taper to 4.5mg. I was explaining to Sharitone how slowly I'd tapered in view of her being told to reduce from 1.5mg to zero over a couple of weeks! I was diagnosed 7 years ago, so I'm not in any hurry! What will be, will be.
I was really responding to your saying you'd tapered from 5 mg to zero in 10 months. When I got to low doses back in late 2019 and early 2020 I took 12 months to taper from 2 mg to zero. Now thatis slow!
And in the end I still needed a little pred after all 🙄 .
What a 'game' this is! I'm sure I got away with my 0.5mg/month taper only because I was on TCZ at the time. I remained well off pred for 6 months, but here I go again.....! I will be mindful of any little symptoms this time around, without the help of TCZ.
Similar to you..yes! My rheumy has instructed me to come off steroids quickly, I have put on a lot of weight. Plus, he said I’d been on them far too long. I decided to follow his instructions to start with, & see what happens. Now I have dreadful pains in shoulders, front & back, head sweats, aches (similar to flu), & fatigue is worse…oh & bad hip/groin area pain. I’m due to see my doctor this week, so remaining like this (unless the headaches worsen, or become more frequent). I want my doctor to see what a quick taper can cause. (For those who didn’t read my post last week…he instructed me to ‘tough it out’ if I felt ill, & not relent & increase my steroids)! After 3 years, I am, today, exactly the same as I presented to the doctor, day 1. I had got down slowly to 3.5mg, & my quality of life was good. I want to get off steroids as they could be causing the increase in joint dislocations I’m having…I have hypermobility (onky diagnosed two months ago, but had it since a child). But clearly this isn’t working!!
Not mine, but at least I know what an adrenal crisis is! I was supposed to see gp last week, but it didn’t happen, so he’s reorganising it for this week. After I’ve seen him, I will judge his advice & rheumy advice & make my own decision re pred. I really need the support of my gp, partially for PMR, but also for all the other new stuff I’m ‘cooking’! Would be nice to discuss hypermobility & EDS, rheumy just did a partial only Beighton score & handed my a booklet to read. I had questions, but I’d had my 15 minutes by then, time to leave!! One thing his letter says that I hadn’t seen (I wasn’t copied on it) was that ‘it’s quite possible’ I’m Addisonian. He’s doing a cortisol test in 6-8 months, after I’m finally off pred. S x
My score was onky low because the rheumy did not do 3 of the tests that are on the Beighton scale! Therefore he wrote I definitely have hypermobility but only a score of 3. I looked it all up after my appointment, tried the three manoeuvres he hadn’t done, & now have a score of 6!!!!! He didn’t even do the Beighton test properly, it would seem! It’s horrible…I was called double jointed as a kid, but I thought everybody could put their foot behind their head, or touch their nose with their tongue! I was labelled accident prone, too! Heh ho, all jolly good fun! S x
It seems the latest buzz thing within the medical profession is to get everyone off steroids. No problem at all but do they have an answer to help us with our pains etc. - oh yes more drugs - pharma probably at the helm getting us all off steroids so they can raise their profits with more toxic drugs. Steroids are 'curing' people and they can't have that.
it seems its in their training manual that it only lasts 2 years, & you have to be in a certain age range. Oh, & with some, you must have a highly elevated CRP! I’ve never seen anything remotely similar in other branches of medicine!
I went out for coffee with old friend who is a GP this week. I mentioned PMR. She clearly knew what it was but said that I was too young. I said I was 60 but she still gave me that doubtful look.
🤣 My BIL, retired GP, thought I should just stop taking steroids when I was on a low dose. He obviously thought I was being silly and dropped the subject!
Ouch, poor you! I think one of the problems is that it is so long between hospital appointments. The consultant makes a pronouncement, like 'Get off the steroids' and then it's 6 months before he discovers the result...6 months of the patient's life
Just realised I meant to reply to your earlier reply.
maybe so…I waited nearly a year, but the treatment from my gp was excellent. I’m queuing for neurology & have been given a date for late July, 2024! But then, with 24 hours notice I had a phone call at 8pm & next night I had a brain scan (mri) at 7.30pm. It’s bizarre. Interesting to see what happens next. Came out of the mri unit in an old old part of our local hospital, creepy & dark (not in main hospital at all) …& a huge rat ran across my toes, as I stood to take my mask off! You just never know what may happen in life! I hope you manage to stay pred free, but it does sound as if you may still have PMR…bit of a hollow victory if you manage to get off steroids, but are still suffering! Hope you find orebody medical to help you!!
Pixix, I was just reading through this thread and came across your post. WHAT a horrible experience for you - the rat, I mean (along with everything else). As you say, you just never know what life holds for you!
Thanks, that’s very kind of you! But we live in the countryside in an old cottage with woods on two sides, & I just laughed & said hello to the rat! They invaded our shed while we were away for 4 days in December, & bored huge holes in the side of it, & a large hole in the floorboards. I think this was karma for the fact we’d had an expert in to kill his brothers/sisters!! Now, if that had been a frog or toad…I don’t ‘do well’ with those!! S xx
I must say you and Sharitone are very brave around rats, Pixix! I have had 2 in my loft in recent years: amazing how they get everywhere! I'm afraid they had to go😒
we live in a forest, so used to it! We had a humane trap & caught & rehome 25 bank voles last year, plus one baby squirrel, a field mouse, 4 wood mice & a mole! We were happy until they all tried to live in our shed. But the rats carry vernier, & sadly have to go…! In the attic is a bad place! One cottage we lived in had mice in the attic, we put down kernels covered in poison, they pulled off the poison & ate the middle! But we lived next door to an old chapel where they stored bird seed!!
Your reply has just shown up in my Alerts after 17 days! finding a medic who actually listens to you is a triumph. I think everyone is convinced that if your CRP is low, there is no PMR. I did get a physio appointment this week, and have had a go at the exercises, only to find that once again, they only make it worse. On the plus side... I do quite like rats🙂
I’ve found that a problem in the past…the physios do a really good job, but sometimes it really hurts more after the exercises! But sometimes you have to go very gently! Especially if other things are going on! Oh,if I’d only known I’d have caught Mr Rat & send him to you! I like rats fine, too, but outside, not inside our shed!! S x
I take vitamin c tablets, large dose in a time release format. I also try to ensure I get plenty in my diet!! But then I was very surprised to find out I was very low in folic acid, after blood tests, so you don’t always know!! S x
I didn’t realise that…I think my B12 was OK, but I will look up my results, thanks! I’m on folic acid tablets for six months, then repeat blood tests, thank you!
They usually give the two together - folic acid can mask B12 levels hence why there was a fuss when they were going to or indeed have, put folic acid in bread - whilst this will stop pregnant women developing a child with encephalitis it does have an affect on blood tests for B12.
interesting, I didn’t know that re bread! The only time I’ve heard of folic acid was in connection with pregnant women, & as I had a hysterectomy at about 40, & I’m now 66 I was surprised at the test result! I’ve just checked my B12 blood test results & it’s fine…sits nicely in the middle of the reference numbers!
I am so sorry this has happened to you. I tapered to zero back in 2020 and it took me a year to get from 2 mg to zero. Within six weeks I had to start pred again, although initially at a very low dose still. About six months later had a major flare and it's only recently I've been back down to my lowest best dose again. Lesson learned - Even one or two mg can make a huge difference if there is still PMR process lurking in your body. From now on I intend to listen to my body and never any more dismiss pain upon tapering as "pred withdrawal". At these very low doses and very slow, tiny tapers there should be no rebound pain, and if there is then that tiny bit of pred was still doing a useful job.
Also, rule of thumb, which apparently your medical advisor didn't observe: the lower the slower!
I had a call from a respiratory consultant last week, and she told me that my rheumatologist is a respected clinician. So I'm glad I'm not a patient of one of the non-repected ones!
But... but... but... you have PMR symptoms! Isn't dealing with those the very point of medication? I assume Actemra helped you taper down the pred to that low level? At what point did the PMRlike symptoms start to reappear, and wouldn't that indicate Actemra alone wasn't enough?
You would think so, wouldn't you. But the CRP level is so low and the last scan showed no PMR or LVV activity. I was only free of pain and stiffness at levels above 15mg. I don't want to go back there! And tbh, it wasn't too bad till Christmas.
The same happened to me when I got to 1 mg. The shoulders and hips just got worse and worse as I went to 0.5 then to zero. I had to go back to 4 for a while then tapered slowly again. It's quite random though - some days are fine, others are not.
I'm on 1.5 now and resisting the temptation to go quickly again...I'll do it slowly!
It is quite possible that you have steroid induced myopathy. The PMR has burnt out and you could be suffering from calcification in your shoulder/hip joints - leads to tendonitis.
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