Diagnosed in early July this year. Started straight away on 15mg prednisolone. Miraculous results in 2 days. 2nd Dr not sure about diagnosis. Took me off preds in 2 weeks. Huge amount of pain followed. Then put back on 15mg (based on blood tests and my reaction to coming off). Acute pain gradually improved but still ached a lot, particularly in legs. Another Dr increased the dose to 20mg. Been on that for 5 weeks, still no real improvement in aches and pains. PMRPro thought it was DOMS (Delayed Onset Muscle Soreness) from not understanding PMR well enough, and doing too much. Due to start reducing tomorrow in 2.5mg steps over next 4 months to 10mg, then 1 mg a month.
My question is - is it OK to try to reduce while I am still aching (through muscle soreness, rather than flare / PMR aches)
Thanks
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CJDLSR
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The pain is pretty much constant, predominantly in my legs - down my thighs and in my calves. It really seems to concentrate behind the knees - don't know whether that's common? I get the odd twinge in my shoulder and arm and have had it in my neck and hip, but not recently. I've tried to rest a lot more this week, but it doesn't seem to have made any difference so far.
Oh dear! I wouldn’t. We seasoned sufferers would have expected that reaction when the doctor took you off your meds as an experiment and caused, in my view your present pain. I wouldn’t try to reduce whilst in this pain. The doctor has devised a tapering plan for you that won’t work and will cause you to suffer. We advocate a reduction of never more than 10% of your dose. A full explanation of managing tapering and these conditions can be found in FAQs accessed on this page. Your doctor is allowing himself to be blinded by the side effects of steroids. It is the only effective drug for our conditions. Used properly it is perfect. We can expect PMR to last an average of 5.9 years much as we would all wish it to be much faster. You need a doctor/ Rheumatologist who really understands these diseases. My miraculous results from Steriods lasted 6 weeks , then I began a very slow taper, reducing from 20 mgs by 2 mgs for one day for a week, then 2, then 3 days and so on. Slow tapers tend to last. I hope this makes sense.
Thank you Sheffield Jane for this very full reply.
I have read about the tapering plans on this forum. I actually thought about reducing by just 1mg a time but wouldn't know whether that should be for a week, a fortnight or a month. I really don't mind going really slowly, I just want it to work!
I am concerned that the increase to 20mg hasn't had any effect, even after 5 weeks.
Well, I don’t know about others, but throughout my years with pmr, I never reduced if I felt any sort of pain. I’m not sure that I could ever be certain whether it was withdrawal pain, doms, or pmr pain, but for me, it was always best to wait to let the pain to die down first.
I wouldn't be reducing.. but 'trying to rest' is not the same as resting... that may be what is required, so try much harder and see if things improve.
But it does sound as if there is something else going on as well.. have you tried painkillers to see if they help or topical gel on affected areas.
Yes,I have tried paracetamol which doesn't touch it, also a heat lotion with no effect. I hadn't thought of an ibuprofen type gel. That might be worth a try. Thank you.
I am conscious that if I sit with my feet up all day I shall just seize up
and also lose any strength in my legs. I also got quite low and felt like an invalid.
Yesterday I walked down our lane and back, about 1.75 miles. Was that too much? I felt a lot better for it! In the evening I went to a choir practice. I thought I might be wiped out today, but feel OK so far, just apart from the aching legs!
I'm sure you did feel better, a bit of fresh air and exercise works wonders... sometime we suggest- breaking it up into 2 or 3 shorter walks.
Just a thought, have you been checked for leg claudication - although doesn't really sound like that - usually hurts when walking but then stops when you do.. yours sounds opposite of that. Odd..
As I come from your part of the country ( I hail from Sedbergh), I can well understand that a walk down the lane and back made you feel better. Also, going to choir. I think choirs do a brilliant job for our mental and physical well-being. We had a great choir in our little village where we live now near Leamington Spa - then covid came along, and we haven’t managed to get going again.
Do hope you manage to get your pain issues resolved. This is a really good Forum with loads of good advice.
"I am conscious that if I sit with my feet up all day I shall just seize up and also lose any strength in my legs."
Actually there IS a happy medium and honestly - it isn't suddenly walking nearly 2 miles and then going out to choir in the evening!!! Sit with your feet up but get up and walk around the house every 20-30 mins. Pottering is also a good ploy (I say that without the slightest idea what people do when they claim to be pottering), Go out for walks - but when you start, 5 mins out and 5 mins back - if you survive that without increased pain, add a minute out, that's 2mins altogether each time. Always have a rest day between those planned excursions - but in a couple of weeks you will be up to over 25 mins walking.
That muscle aching concerns me - and to be honest, the first thing I would try is going (briefly) to 25mg and seeing if there is any difference. And I certainly wouldn't be tapering 2,5mg at a time, 2mg if you absolutely must down to 14 but then 1mg at a time.
When you taper you drop to the new dose over a period of 3-4 weeks. If you do it "cold turkey" you stop taking 20mg a day and change to the new dose every day instead - and you stay there for at least 3 weeks before dropping again. Using our slowed tapers you introduce the new lower dose for one day and then take the old one for a few days before trying the new lower dose again and it takes about 3 or 4 weeks to get to every day new dose. There are a few options in the FAQs under Tapering.
Ah!! That's rather useful to know. Wonder what I can do about it though. Speak to my GP??
A retired GP friend has told me that Omeprozole is dreadful stuff and should never be prescribed. I think none of us really want to be on the AA, nor steroids for that matter.
I haven't started researching the different medications yet!!! Perhaps it's time I did that.
It would help if they started medications that aren't lifesaving but optional add-ons one at a time. Then you would have a chance of identifying the adverse effects of each.
I don't see why you shouldn't stop the alendronic acid for a few weeks and see if that helps - I'm sure others have said their AA adverse effects disappeared quite quickly. That is a very long term medication anyway. Losartan isn't a good one to stop without a substitute so you'd have to ask her about that, Omeprazole is by no means the only option there and you can buy an H2 antagonist to replace it OTC anyway but the GP could prescribe it. I'd definitely ask your preferred GP to help. It can't do any harm.
I am just re-reading some of the responses I have had to this post, and see you suggested going to 25mg to see if that makes a difference. I had thought about this but am very conscious that my GP wants me to start reducing. However, as I am discovering, the people on this forum seem to have much more realistic advice!! If I try 25mg, would 3/4 days be adequate? How long should I give it "as a trial"? And then can I go straight back to 20mg (if, that is, the 25 makes the difference I'm hoping for)? And then, how long should I stay on 20mg before starting to reduce?
I had decided to use the 5 week tapering plan and reduce by 1.5 until I get to 10 or 15, then by 1gm
I'd be really interested in your thoughts and answers to the above questions. Thank you.
but am very conscious that my GP wants me to start reducing.
He may well do, but as you say, we are much more realistic. If your PMR is not under control, then by reducing Pred, it will just get worse.
Personally think you may need longer than 3-4 days at 25mg, we usually suggest at least a week. You may be able to reduce back to 20mg in one step, but probably two would be better.. so 22.5mg for 5-7 days, then to 20mg for at least a week, preferable two.
If you try and rush things, and don’t get proper control, then the scenario is likely to be repeated.
What DL has already said - you cannot REDUCE until the existing inflammation is under control. All that will happen is that it will get worse again and you will end up in a mess. A week at 25 would probably be plenty to show if the aches are entirely PMR-related but you also need to sort out the possibility that it is due to one of the other drugs. I'd definitely "forget" the AA for a few weeks, you won't crumble without it in that time. The others are less easy without the GP lending a hand - except you can buy a different stomach protection medication and drop the omeprazole for a while. Those are the most likely offenders.
Thank you, PMRPro and DorsetLady. I was pretty sure what your responses would be, so you have confirmed my own thinking. My problem is, should I just go ahead and do my own thing regardless of what my Dr says? My husband and I both feel we should consult her but that is easier said than done!! I have tried messaging her but she can take over a week to respond. I had given up on her last time, but eventually got an email. My husband is now thinking of finding a good rheumatologist with at least good knowledge, if not a specialism in PMR. We are prepared to travel anywhere. Leeds (which keeps coming up on top in any of my searches) is only about 130 miles away.
The advice I get from here, and from my surgery is just so different!!!
Well you could take our advice -but email her stating what you intend to do quoting “following advice from the charity” . Also give her the option to make a better suggestion, or you’ll go ahead.
Less likely to make her throw a wobbly than saying “off a forum” who she’ll probably think m is Facebook or some random site.
She may be floundering herself -and thinking everything is okay if you don’t tell her it isn’t ..
That's very good advice. Thank you. I have taken to saying that I am in touch with the PMRGCA charity, who have a wealth of experience and knowledge. I haven't said that to the GP yet though.
The trouble with Leeds is that the good ones don't do private and some who do private are seriously questionable in their knowledge about PMR - in our experience at least.
Where are you? Cumbria. I would say Newcastle rather than Leeds if you want to keep the travel down. I'd take a trip south if cost and time was less of an object and have a few days in the south with a diversion via Chertsey!
This UK "I'll reply to emails when I feel like it" is beginning to annoy me. I sent stuff to my accountant and 2 weeks later had heard nothing. "Oh, it's in my intray ..." Thank you, I wanted to know you at least had received it. And I asked a question about tax liability months ago, she had no idea, she would ask a colleague, I still haven't heard.
Doesn't matter - he's our go-to for a sensible assessment of PMR patients. He thinks out of the box and treats the patient in front of him, not in an imaginary textbook.
I really want someone to look at the whole picture - look at ME holistically. There is so much going on at the moment and most of it is linked - high RA factor for years, but no clinical symptoms; vasculitis diagnosed a few years ago (from a skin rash when I walked long / difficult distances) but that never really bothered me because it always cleared up in a few days. Now there is the BP, ostoeporosis, and GORD has been an issue for some years too. All the meds seem to be fighting each other too. I just want to do what is the best I can do to keep myself as healthy as possible as I age. Doesn't seem to be too much for anyone to ask really, and you'd think the medics would be pleased!!
It shouldn't be too much, and in days of yore it would have been GP pulling it all together, but unfortunately times have changed... and in many respects not for the better!
Specialism may work, but only if they actually communicate with each other.
Sometimes, maybe. I'm not against change as a principle. In some respects I find it exciting. But sometimes, it isn't for the better, and the current trend away from face to face contact with people (including ones health professionals) I find quite worrying on several counts.
What we can do as individuals about that, I am not too sure!
I think you are likely to find that RH will do that - there will be aspects he isn't an expert in but is aware of how it wil impact us. He often starts with a F2F and then works with email and video calls after so it doesn't necessarily mean traipsing all the way south every time.
High rheumatoid factor isn't always that meaningful and there are better tests for deciding if you have or will eventually maybe develop rheumatoid arthritis. But a lot of doctors take lab results as much more concrete than they really are.
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