just over 2 weeks ago went diwn to 2 mg prednisolone from 50 in august 2022. Nothing seems to be going right now. After many many years of 75 mg thyroxine daily for under active thyroid was told to cut down to 50 mg daily. Also became diabetic with Pred. & have been taking 2 500 mg metformin daily now told to take only 2 . Levels are all over the place sometimes prick test is 4 sometimes as high as 16. Aches & pains in legs etc just as bad & been referred to local gym for exercises etc as medics say it’s wear & tear not pmr. Just had awful fluttering in chest & all hot etc. worries me so much that I’m dying. Suddenly break into tears when I get the fluttering. Whatever can I do to feel better
feel awful: just over 2 weeks ago went diwn to 2 mg... - PMRGCAuk
feel awful
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CavalierKC3
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In my humble opinion, your medics are wrong! For a start they can't tell if it is PMR or not until you are entirely off pred but that aside what you are experiencing is absolutely typical of tapering pred and your adrenal function not quite keeping up with the reduction in pred dose. Is this your rheumy team or the GP claiming it isn't PMR? Ah - just looked at some past posts - you are under Muktyar at the Norfolk and Norwich? Answers it all. He is adamant that his tapering approach is perfect and the rest of us are wrong. I can't say here what I think of him!! I'm not the only one. And unless you can go privately - it will be difficult to see someone else not under his thumb.
You have got to a low dose pretty quickly by general standards and I suspect PMR as a symptoms of GCA is very much there but at a low level. However, starting at 50 certainly suppressed adrenal function. Now it has to start up again and it takes time. And after less than 2 year - whatever CM says, GCA can certainly be very much alive.
How quickly have you reduced the dose from 5mg? Above all, how quickly did you go from 3 to 2mg? And where did you last feel well?
I dropped to 5mg on 29/9/23. 4 mg on 24/11/23. 3 mg on 22/12/23. 2 mg on 16/2/24. I will go to 1 mg on 12/4/24 for 2 months & then nothing. The pains came back about last March when I was on about 12 mg. I am really concerned about starting at gym tomorrow. My GP referred me to physio re pains(wear & tear) & physio referred me to gym
I'm not surprised you are concerned, I would be too. And all I can say is, in my opinion, this isn't the right rheumy for you. But how you sort it out, I really don't know. Unfortunately, Max Yates at the N&N doesn't do private work and it is always difficult to switch to another doctor in the same Trust. I think your GP may be the place to start but he may be totally in favour of Muktyar's approach which makes it difficult.
What do you think about the tapering. He never advises 1/2 a drop
Of course he doesn't - he doesn't believe patients know anything. He has a theory, that theory is the only correct one and anyone who disagrees doesn't know what they are talking about. Like DL, I believe the lower the slower, that every patient is different - and above all, the 2 year duration of GCA/PMR is a myth, And I know at least 3 rheumatologists, one probably the best in the UK and the other amongst the best in the world when it comes to PMR, who agree.
Good morning PMRpro as a a matter of interest who would you suggest are the best 3 Rheumatologist in the UK ?
Sounds like your having a tough time Cavalier KC3. Hope things improve soon , good advice on here .
Thanks
Specifically PMR - there are no doubt others who are brilliant in their own fields. Prof Sarah Mackie in Leeds and Max Yates in Norwich but they are both part-time NHS, rest of the time they do research and haven't time for private work. Rod Hughes in Chertsey does NHS and private and is our go-to if you can. He is definitely worth the journey! The best in the world is in northern Italy (he is my rheumy) but does a lot with the UK rheumies, and he and Baskhar Dasgupta are leading a push of the agenda in the direction of a spectrum of disease. And that, I think, should change the view of "just PMR that is benign, lasts 2 years and is gone". Because that it certainly isn't ...
Thank you I have seen Prof Hughes and while I have a Rheumatologist from Derby Royal who is always looking for other possible causes of my “PMR” , has tested me for many things and willing to listen , they differ in their opinion I have posted this before.
Never seem to get on an even keel perhaps time is what’s needed , take 5mg Pred and have for 10months started at 15mg 20 months ago . Not completely without some muscle aches but not all the time , have always had full range of movement . Normal markers which I know is not that unusual.
My chap thinks I also have inflammatory arthritis the Prof. does not but do have PMR.
Thanks
Hello PMRpro, could you please let me know the name and location of your rheumatologist ?
My sister who lives in Iseo was diagnosed with PMR in January 2024 and saw a private rheumatologist who gave her a plan for the reduction of Prednisolone . She is expected to finish the treatment in August 2024. Unbelievable.
She is already down to 5mg. Starting pain in her hand. Left shoulder hurts in the morning but improves with movement. Apart from this, she is active in the house, walks the dog …..
I am entering my 5th year of Prednisolone but I also have GCA. She was diagnosed soon after onset of symptoms, which was lucky. Some genetic reason, I think.
I told her about this forum but her knowledge of English is not good enough to incentivate her to be part of it. Is there an equivalent in Italy?
I hope I didn’t disgress too much from the original post.
Thank you for your continuous support to us all
Not that I know of - does she have a local rheumaliga charity? I wouldn't be looking for an Italian one - don't speak it enough!!
I am in Alto Adige, my rheumy is the Regional Head of Rheumatology, based in Brunico, Prof Christian Dejaco. There is also a very good and nice Italian guy in Merano with an interest in PMR, Marco Masio. I have no idea if either do private work though and getting an appointment with Christian is like looking for hen's teeth! He is so busy, I doubt he has time! A lot of Italians do seek treatment here - much to the disgust of the locals!
home.sabes.it/it/reumatolog...
Thank you so much for your prompt reply. I will pass the message to my sister.
You are an invaluable source of information, as we all know!
I wonder if Muktyar and Max Yates ever discuss their entirely different views on the treatment.
Do you think Max Yates is any good did you see him
No, I saw Dr. Merry twice and then lockdown came. His secretary called to ask if wanted a telephone call for £150. I said no thank you and I’ve managed on my own ever since with the help of this wonderful forum.
Max Yates is very good but he doesn’t see private patients so I guess it would take a long time to be able to switch on the NHS. Longtimer is the one to speak to about Max Yates.
Max Yates treats the patient in from of him, not a self-created illusion that patients are manipulated to fit. And like all good doctors, he LISTENS. You may not like what he decides you have - but you will be part of the management process.
Has your physio worked with other people who have PMR? I have found it is important to try and find one that has or at least is interested in finding out about the illness and so realises it needs to be treated differently.
No idea, but I don’t think he really knew what I was talking about when I said about pmr
I go to an osteopath who is really interested in PMR and reads up on things about it, which makes me feel I can really trust her not to recommend something that is not suitable. Perhaps you should question him a bit more??
I don’t see him regularly, he referred me through GP surgery to gym which I am supposed to start tomorrow
Perhaps you can talk to the people at the gym about PMR.
You could perhaps tell the trainer at the gym that the problems with PMR are similar to those with ME/CFS and great care is required with repetitive actions and avoiding over-exertion.
what is ME/CFS. If my aches/pains are all wear & tear related osteo arthritis as Muktyar says would I feel better some days or even different times of the day. I have been told I have good movement of hips, legs knees etc. i do the stretching exercises that physio said but nothing seems to make much difference. Could I still have the PMR if inflammation markers are low
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
If it were OA, it wouldn't affect the muscles in the way it sounds as if it does if I understand you correctly. Since I don't have OA anywhere except the pelvis and spine, I can't really say. Maybe DL or someone else with widespread OA can give an opinion.
My problem is across lower back, & left leg mainly, especially left thigh. Pyphysio said I don’t have good muscle in left thigh like right leg. I wonder if the Prednisolone has damaged muscles. Could it still be PMR if inflammation markers are low. Neck is stiff when I try to turn to right or left but again told you are getting older ( nearly 79) so what do you expect
Could still be PMR even with low markers. A part of PMR can be myofascial pain syndrome. Piriformis syndrome and greater trochanteric pain syndrome can lead to symptoms like you describe and are also common alongside PMR. I know because I have them! Low back problems affect the whole back and that will affect shoulders and neck muscles. Unfortunately, good back physios are rare as hen's teeth in the NHS.
with those conditions you have, can you be in pain one minute & then sit for a little while & when you get up aches & pains gone for a while. That’s how I am
Some days yes - some mornings the low back pain has me bent over. The next morning, don't feel anything, The longer I'm standing or walking, often the worse it sets in. Once I am moving it eases for a while, unless I walk too much. There is a sweet spot in the middle
so what do you put your symptoms down to. PMR or the other conditions. Just had a lot more fluttering in chest, crying my eyes out as just don’t know what to do for the best
I know which is which after all these years.
If the palpitations are bothering you so much, then you need to speak to the GP at the very least. If they are bad at home at the weekend or at night - call 999. How long do the episodes last?
That’s how my lumbar spondylitis affects me [walking or gardening ] but in that specific area only, not down legs.
My husband also had a weak back [damaged lifting heavy object awkwardly pre H&S days] - it came on when he was walking, but a sit down for 5 mins allowed him to carry on.
As we know backs are notoriously difficult to treat. … seemingly we still haven’t completely evolved from walking on all fours.
I had similar neck trouble, was given an X-ray and osteoarthritis was identified. Didn’t make the discomfort go away but separated it from polymyalgia. I have a great physio who says some of the occasional back and leg pains are due to tense muscle surrounding the areas rather than something ghastly like bursitis etc. So I get the occasional massage. Just adding this to the mix!
A lot of my back pain is muscles that are in spasm - and it is excruciating. It is also a major cause of sciatica that is rarely mentioned in the UK. If you can find an alternative therapy that works for YOUR muscle problem, you are way ahead of the game. Bowen therapy done really well helped me a lot. Therapeutic sports massage and myofascial release is also useful. Here they use a technique called needling - small subcutaneous injections of lignocaine or saline that form blisters and this stimulates underlying muscles to relax. Very German, very useful!
Agree that OA doesn’t affect muscle per se, but sometimes [as I have replied to CKC3 elsewhere in thread] sometimes it seems difficult for some to decide what is OA pain and what it PMR - sometimes the only answer seems to be what medication helps - Pred or painkillers.
As you rightly say, low markers don’t necessarily give the answer that some doctors think they do!
Good morning I had a referal for the gym at the end of last year. I havent activated it and at the moment dont intend to do so. Its our bodies at the end of the day. I have spinal stenosis and GCA and cant imagine the gym would do anything apart from put me in bed at the end of the day. I hope you can get some help.
Hi CavalierKC3,
Others with more knowledge will be along to advise you regarding all the complications you've been experiencing and the medication concerns too.
I just want to say that I've had PMR for almost 5yrs now, and at times when some new symptom has seemingly come out of the blue, its seemed to trigger a snowball effect where suddenly all sorts of other complications emerge.
At these times it can really feel like you're dying, particularly if the steroids are affecting your mental health & well-being too and you're at a low point.
You're going through a lot at the moment but I feel some of your leg pains may just be due to you dropping too low on your steroids. (others with more knowledge will correct that if appropriate)
I know from my own personal experience that the pred exacerbated my ectopic beats but obviously anxiety can cause palpitations too.
Any alarming or unwanted changes I've experienced have always been checked out by one of my medical practitioners and tweaks made where necessary.
I feel that so many worrying things have recently occurred for you that it's understandable you feel so 'down'. However, I truly believe that all of your concerns can be remedied eventually but you have to be as firm as possible with your medical professionals and explain that you want further investigations because you're not happy with their advice.
Unfortunately, it can sometimes take just one simple change to throw everything else out of kilter. These concerns are almost always sorted but it may take a little time.
Hang on in there and see what others advise.
Sending you a hug.
DorsetLadyPMRGCAuk volunteer
Agree with PMRpro - and length of time for GCA/PMR and it certainly sounds as if your adrenals are really struggling at the moment. For adrenals you really need to stop tapering [not much chance of that with your Rheumy I’m guessing] and give them time to catch up.
And although you are reducing at the rate of 1mg every couple of months, which is achievable for many provided PMR is fully under control - a better way for your adrenals is 1/2mg at a time and one of the slower tapers both PMRpro and I always recommend.
On the subject of adrenals have you asked for/received a blood test to check if they are capable of working. Simple test done in GP surgery.
The fact you have had issues since being at 12mg is really telling everyone [or should be] that your illnesses are not under control. And to that end you do need to see a Rheumy who is less intransigent than your current one.
As for gym, I think you need to be very careful with what you can do.
No blood test for adrenals etc. all I get from rheum is pains are wear & tear osteo arthritis, nothing to do with GCA or pmr as my markers are low
That sounds about right...not sure what else we can tell you, other than get another rheumy... but easy for us to say ... so sorry you are un such as bad situation.
Do you mean the aches & pains do sound more wear & tear osteo arthritis & not pmr
The aches and pains may be OA , but they may also be PMR not under control - at such low doses it's sometimes difficult to know whether one or the other or a combination of both.
All I am saying is, if some are PMR, then too much exercise may make them worse.. so just be aware that may happen, especially if the exercise are repetitive and use certainly muscle too much. .. A little at a time..
Have you seen the charity's booklet on exercise -
You have, had lovely, informed replies and I agree with every point. I feel that your doctor’s advice is making you feel much more awful than you need to. We have few options with these diseases and need to deal with what we have, in a gentle mindful way. Firstly you need a Rheumatologist who understands these diseases and how to deal with them in a patient centred way. My heart goes out to you because you have been needlessly driven to despair. Please use this forum often, as your back up and search for a wise inquisitive Rheumatologist . I agree that you are not ready for the type of physical therapy that has been recommended, you could try it though - angels can be everywhere. I am on 5 mgs and would never taper more than half a mg at a time. Out of care for my Adrenal recovery. DorsetLady outlines the tapering method in FAQs. All that is stopping me is a horrible bout of (probably )Covid and post viral symptoms of sickness and fatigue that my Rheumatologist says may take months to recover from. No pressure applied, she is one of the stars PMRPro mentions. Dr Sarah Mackie, Leeds. Quality of life really matters.
I love ‘gentle and mindful way’. Poor Cavalier must feel surrounded by barbed wire! PMR is bad enough as we combat symptoms of the disease, side effects of the remedy and aging. Sometimes we just feel overwhelmed and let down by our poor bodies trying to do their best, and all the related tests and medications. This forum is so important in giving us gentle and experienced support when we are let down and feel low. Just what we need on the bad days and a reminder that there are often unexpectedness pockets of brightness at the weariest times. Hugs to both you and Jane ❤️
I do not have the vast knowledge of a lot of people on this group. However on the surface I feel you tapered far too quickly. I had to argue with my Rheumy about tapering, having read the experiences of this group. He wanted me to drop 2.5 a time at short intervals. I refused and dropped .5 at longer intervals.
I feel so sad that you are being treated in this way. What an awful arrogant, ignorant doc you have. Each patient needs to be listened to and treated as an individual.
You have tapered very quickly. I began in a similar situation in Nov 2019 and I am now hopefully, over the next couple of months, tapering from 1mg to 0.5mg. The very slow taper has served me well..withonly a couple of hiccups along the way (one kept me hovering at 9mg for a few months and another at 5mg).
But I am actually writing to acknowledge your question about whether pred can affect muscles...you said the physio commented that you had lost some muscle...a few of us do have muscle myopathy at high doses...my upper leg muscles seemed to dissolve over a few weeks. They haven't returned and any attempt at exercise is very debilitating....so do take any exercise very gently. For some there is regeneration at low doses...my GP said it can't be guaranteed. I think it was dear piglette on here, who suggested recovery eventually follows after we stop taking pred.
Have you tried cutting carbs dramatically to help with the diabetes? I became prediabetic very soon after beginning pred and kept cutting carbs until it was under control (it was really drastic at the beginning).
I feel like I have aged 20 years during the course of this disease ...I have less vitality than my mother had at 90 years old. It is depressing. I am lucky to still be working (online). Is there anything you can do to distract yourself from your terrible situation?
By the way...I abandoned my arrogant consultant after a couple of weeks and have been supported by a sympathetic GP. Do you have a GP to turn to?
Hang on in there...the bad times do pass...
We’re you looked after by Chetan Muktyar at Norfolk Norwich hospital by any chance. He has been my Rheumatologist & maintains his tapering is the perfect way. The day I was diagnosed I was given a paper with how I was to taper over 2 years. Him or his nurse will not change that. Any aches pains etc they maintain is not due to PMR etc & would not up the pred, it’s all wear & tear that comes with age
Most of us are cared for only by gps. Can you find out if your gp is more understanding and go to him/her?
Could you afford to see Rod Hughes for a one off consultation ? He will then make recommendations to your GP and you can get rid of Muktyar and his rigid ( ridiculous ) methods of reduction.
Where is Rod Hughes based
He really understands PMR and listens to you and your concerns. He is one of the top three that PMRpro was referring to.
Chertsey in Surrey
He is in Surrey. I saw him last October. I also live in Norfolk.
So we’re you under muktyar to start with
No another arrogant dismissive Rheumy . Dr. Merry
What do you know of max Yates, have you seen him
poor you. If you were able to get to the Nuffield Hospital in Ipswich, I have been seeing, when needed, a wonderful rheumatologist called Dr Anita Weerakoon. She is calm, patient, listens to you, treats you holistically, and costs £150 an hour. When the GPs ignored my dreadful tiredness at 3mg Pred, she asked them to do the 9am adrenal test in the surgery. The GPs ignored the bad result « abnormal but to be expected « so she referred me to the endocrinologist .Without her I would probably be dead by now as the synacthan test done in hospital showed no adrenal function. 2nd synacthan test tomorrow, fingers crossed that it might show an improvement but I fear not. Good luck.
she sounds excellent. Good luck tomorrow. When she referred you to an Endo was that on the NHS? Or did you have to pay privately for that too?
I saw the endo privately as Dr W said we can’t wait about and after the hospital synacthan test, he told my gp to refer me to the NHS endo clinic.
I saw Dr Weerakoon pre lockdown on the NHS at Ipswich before she went private. She was as you say very understanding and helpful on this subject however her hands were tied with NHS guideline. I did get a Synathen test a good while ago through her at the hospital but that was in the early days which was good. Unfortunately with Covid, to be fair she did rang me a couple of time, everything ground to a halt and then she left to go to Nuffields. I was left in limbo without a Rheumatologist for a couple of years, however she did refer me to Dr Fowler Endocrinologist best thing ever who has been a godsend and biggest support trying to cover the different aspects that maybe are beyond him because at the time there was no chance of getting another Rheumatologist. I have now got another Rheumatologist Dr Gudu, Ipswich Hospital she’s very pleasant, listens and isn’t dismissive. She did however put the responsibility on Endocrine with medication as through bloods says there is no sign of PMR (been 7 years now) so the Pred/ hydrocortisone being more for adrenal support which isn’t her domain. She did get me ultra sound on my upper arms, bloods and an MRI scan on my neck however but didn’t find anything, put it down to fibromyalgia maybe. I really don’t understand bloods and inflammation as I am on steroids surely that would affect my markers which are normal and have always been this way. Maybe get another appointment soon but do have access to a Rheumatologist nurse which is better than nothing. From the nightmare rheumatologists around I do feel lucky in many ways, although I have experienced one which I’m too polite to say what I thought about him. Good luck tomorrow. Btw what was the holistic approach you mentioned?
Dr W was holistic in that she would ask me about other health problems and examined me from head to foot. She would mildly suggest that perhaps it would help I saw, for instance a dermatologist or my cardiologist. , and I can ring or email for advice any time. A proper physician.
The scary thing always seems to be that they know HALF a story. Yes, it IS likely to be abnormal BUT it also must not be ignored - at the very least you need to know about an adrenal crisis, the symptoms and what to do. Or you could end up dead ...
Abnormal surely means that the patient should be seen/referred/ given another test at least. As I told here on this platform some time ago, shortly after the abnormal cortisol result, I suffered from 9 hours non stop vomiting and diarrhoea. When I rang the surgery and a doctor eventually rang back, he said this was normal and I probably had gastroenteritis. Luckily the private rheumatologist referred me to the Endo…diagnosed with secondary adrenal insufficiency…and 50% of deaths from SAI are from vomiting and diarrhoea. So I am v lucky to be here.
That's what I mean - half a story. They know that a patient being on pred will probably be the cause of a low cortisol. But they don't then pull out the rest of the facts and tie them together and identify potential risks. It was the reason for the endos developing the red emergency steroid card as healthcare professionals were identified to be missing potential adrenal crises and patients were getting unacceptably sick. But they haven't done the educational part of the roll-out.
That's why I tell people to call 999 and say adrenal insufficiency, possible adrenal crisis developing. Calling the surgery is usually a waste of time as you found. Particularly since even if it WERE gastroenteritis, the fact you were really ill, almost certainly dehydrated by then, meant there was a far higher demand on your adrenals for MORE cortisol which you probably couldn't produce at that stage.
Thanks. I’m just about to fill in a form for the ambulance service.
Hi CavalierKC3 - I’m sorry you are having problems and feeling so unwell. I don’t know if this will help you but when I was first diagnosed with PMR I saw a young female rheumatologist. During a consultation she didn’t look me in the eye but more importantly made a mistake with the name of one of my meds. When I corrected her she waved her hand at me dismissively and said “yes, yes”. In the copy of her letter to my GP the name of the drug was still wrong. I didn’t feel up to making a formal complaint, but was advised by a friend to contact PALS (as far as I know every hospital has a PALS office). I emailed them outlining the problem and they suggested that they would say I would like a second opinion and I was sent an appointment for another rheumatologist in the same hospital. I have seen her ever since, although tbh she isn’t that good, but does smile at me, look me in the eye and gets the name of my meds right! Hope this helps. I am at 5.5 mgms Pred and up and down, with palpitations too, so I can sympathise.
I would think your reduction of thyroxine may not be helping your aches and pains. You have had some great advice on here these people really know about PMR etc. I have survived the last few years despite Rhuemies and GPs by following advice from here. There is a Thyroid group in HU who may be helpful about that reduction which I guess was because your TSH is too low. My TSH has been super low for years now and fortunately my GP has left well alone! I take NDT as Levo didn't agree with me at all.
I was thinking exactly the same but didn't address it in my reply as it isn't something I know that much about. This utter reliance on lab results can be a real problem.
Yes their reliance on TSH is utterly ridiculous and a huge number of GPs are paying no attention to the NICE guidelines. When my Hypothyroid journey started my TSH was 4 times above the "normal" level. So when my TSH went a fraction below the range they went ballistic. I found a different Thyroid support before I knew HU existed and have been very grateful for the information received.
I agree with you it is very worrying. Their training in matters Thyroid is minimal particularly considering we need thyroid hormone in almost every single cell in the body. It makes a good case for us educating ourselves and taking an active part in our health care. I have probably read at least 10 books on Thyroid matters and definitely know more than the average GP. I find it very enlightening taking responsibility for my health and not blindly following a GP.
I am so sorry that you are feeling so awful. Do you know why you were told to reduce your thyroxine when the dose you were at was being effective? Was it as a result of blood tests? I too have had an under active thyroid for many years. Last June I was diagnosed with GCA & PMR but my thyroid prior to that was skewed & the thyroxine dose was increased in May to 100mg (I’m normally on 75mg). By October I was feeling awful but with the introduction of all the new medication for the GCA/PMR it was difficult to know where the cause lay. Eventually after yo-yoing of the thyroxine, at my request it was agreed with my GP to revert to 75mg & I am now feeling a lot better. Perhaps you could try going back to your original dose of thyroxine & see if that helps? I am now off Pred (didn't like me!) & on Methotrexate which does seem to suit me. I still have pain particularly in my hips & legs but my rheumatologist told me on Friday ‘That’s not PMR - your ESR & CRP are both 5 which is within range. You are 70 after all & can’t expect to do all the exercising you used to. I’ll refer you to a physio.’ Funny how the start of the pain coincided within a few months of PMR/GCA diagnosis! Sorry for the long essay - I sincerely hope you get some answers & begin to feel better - or, at least, less awful. Take care
I share others' views about the taper suggested by your Rheumatologist. The British Society for Rheumatology and the British Health Professionals in Rheumatology Guidelines for the management of GCA are in the 'Resources' section on the PMRGCAuk website. pmrgca.org.uk/information-a...
In there, on page 5 it suggests a tapering regime, but states:
"Some patients may benefit from a more gradual glucocorticosteroid taper, or a period of treatment at a stable dose, such as 5mg prednisolone for 3 months. There are also some patients who will require long-term low-dose glucocorticosteroid therapy. The dose may also need adjustment, due to disease severity, comorbid factors (eg diabetes, cardiorespiratory or renal disease), fracture risk, patient wishes and adverse events."
Over almost 8 years, I have had several "periods of treatment at a stable dose" and am currently starting month 2 at 5mg pred, having spent 5 months last year at 5mg! Between times, I have tapered the dose, usually at 0.5mg over several weeks. 2 months ago I started to taper from 1.5 to 1mg, but it was a step too far and my amazing Rheumatologist has told me to stay at 5mg "for as long as it takes" to get the inflammation under control.
Why not print out the Guidelines and discuss with your GP or PALS your Rheumatologist's inflexible approach.
We are all behind you! 💐
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