Questions on Withdrawal Pain vs PMR Pain when Reducing
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Is it simplifying things too much to say that PMR pain will appear quite quickly and increase in severity if a drop is too large or too quick; whereas withdrawal pain may come and go over the period of a drop?
Also, if withdrawal pain is off and on over a 2 or 3 week step of 10% in a reduction plan is it still OK to take the next drop?
1 like, 9 replies
Sheilamac_Fife jean39702
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EileenH jean39702
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This link takes you to a thread on this site with links inthe first post and then at posts 4 and 5 I explain my "Dead slow and nearly stop" reduction concept with the logic behind it. Do ask again if there is anything not clear.
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
Jaydy EileenH
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EileenH Jaydy
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I'm not surprised you feel unwell - 3 weeks at 10mg is far too little before starting on your next reduction. You need at least a month and preferably rahter more. Just because the blood tests are normal does not mean the PMR has gone away - it means you are on enough pred to control the inflammation, whether that is well above what you need or jsut what you need can't be assessed. I keep saying, the Bristol group keeps their patients at 10mg for a year - by that stage you are close to the amount of corticosteroid the body makes anyway so it becomes more difficult to reduce. You should not reduce more than 10% of the current dose anyway - but for many people even that is too much to do from one day to the next. All those things you describe are common with both PMR and with pred and are due in the PMR to the underlying autoimmune disorder that gives rise to the symptoms which we call PMR - pred doesn't affect that part of PMR so you will still feel fatigued and so on unless you rest enough. You cannot carry on "as normal" - you can carry on yes, but you have to learn to pace yourself and only do what your body can manage or you will flag. You don't say what your hobbies are - maybe they are hard work ones????
The low back pain is something separate from the PMR I suspect - either myofascial pain syndrome or other spasmed muscles in your low back. I personally would recommend you consult a Bowen practitioner (probably the gentlest option for low back pain) or see a physiotherapist because it needs to be sorted out itself, possibly with local cortisone injections and some physiotherapy. I do know about that - I ended up in hospital with something similar a couple of years ago. An orthopaedic doctor told me it was "wear and tear" and there was nothing to be don, I couldn't walk or stand for more than about quarter of an hour, the pain was awful. Physio and cortisone shots sorted it - but in the UK I had kept it under control with Bowen therapy.
Jaydy EileenH
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EileenH Jaydy
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PMR is due to a chronic disorder, sometimes that autoimmune part burns out and then you can stop taking the pred, but until then you will need some pred to control the inflammation that causes the pain and stiffness. If you bring on a flare by reducing too fast or too far then you will have to return to a higher dose to bring it under control again so the benefit of the reduction is lost. If you don't take enough pred then you will have symptoms AND the risk of side effects.
Many GPs fall into the trap of thinking that in PMR they can give a one-off course of pred and reduce it fairly quickly as they do with other illnesses - it doesn't work like that. The cause is this underlying autoimmune disorder and that isn't affected by the pred at all, as long as it is active it will cause symptoms - the reason you went to the doctor in the first place.
The link I gave Jean above takes you to a thread on this site. In the first post there are other links to other places you can get info and the last link in the post is to a paper aimed at GPs to help them diagnose and manage PMR better - from one of the top groups in PMR in the UK. They take 3 months to get to 10mg and then leave the patient there for a year. Doing this they find they have relapse rates of 1 in 5 instead of 3 in 5 as found with other reduction schemes.
It is called "Our approach to the diagnosis and management of polymyalgia rheumatica and giant cell arteritis" and is by V Quick and Prof J Kirwan who were both in Bristol when they wrote it. Your GP could benefit from reading it.
tavidu Jaydy
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EileenH tavidu
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Of course, you can have immediate pain due to withdrawal and as that improves you may start to get PMR pain as the dose is too low to control the inflammation.
tavidu EileenH
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