I’m so sorry it’s me again but I feel really desperate and don’t know what to do next.
As many of you know, my journey with PMR has been difficult, to put it mildly. I was diagnosed with PMR in May 2017 and due to a possible GCA diagnosis, was left on either 40mg or 30mg for almost two years. Since then I have managed to reduce to 5mg then, in August this year, I had a check up with a rheumatologist at my local hospital where I was told to reduce by 1mg per month until I was off Pred. There was no discussion about the very likely side effects of doing this, just the old comment “you’ve got to stop taking Pred”!! Well, Ive been trying to reduce but the last month or so has been very difficult so I decided to try to contact her again. There is a Rheumatology Helpline at the hospital where a message can be left, in the hope that someone will phone back with Help, so I called this number.
OThe reason for calling this number was because I’m experiencing such fatigue that I sometimes have great difficulty is keeping my balance while walking - but no matter how tired I am, I have great difficulty in sleeping. My question was, did the rheumatologist think there was an issue with adrenal glands and, if so, could I be tested to check what was happening. I had a call back from one of the nurses, who said she had spoken to a registrar and that its not possible for me to have this test until I’m down to 3mg. I tried to explain that I was having difficulty in functioning whilst trying to reduce from 5mg to 4.5mg let alone getting to 3mg in order to have the test. The nurse’s response included a reminder that the rheumatologist wanted me to reduce by 1mg, not .5mg and that it was essential I came off steroids. So, I tried to explain that I live on my own with no children or siblings to help me, and then asked how she expected me to cope. Her answer was - “I have no answer”. At that point the conversation was obviously not going any further so I had no choice but to put down the phone. Surely no doctor would think that a patient would want to STAY on steroids!!
Even as I’m writing this, I’m not sure why I’m doing this because there doesn’t seem to be an answer but I just have to tell someone.
Sorry for the ramble…………..
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Janann25
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I understand your frustration, I feel angry for you!....
I think basically you need to lower pred as slow as you can cope with....even though that`s a struggle....I also have balance problems when walking, and if lucky enough to go out, I hold onto their arm....they don`t object as they know the struggle it has been for 10 years plus....
Wish I could give better advice, but sure someone will be along to help...
It certainly does....This lowering with adrenal problems is a whole new ball game to some of us.......but we have to get down somehow....so tough.....we plod on together...
Sorry to read about your difficulties, it's certainly not a situation any of us wants to be in.
Speaking from no experience, do you think 3mg can be any worse than where you're at now? At least you'd be in a position to get the test done.
However, before doing anything, I would advise calling them back to find out how long you need to be on 3mg first, and how soon the testing would be done. This way you'll know ahead of time how to deal with any issues with a set goal in mind.
I am not sure that advice is really that kosher. Dropping from 5mg to 3mg when one obviously has adrenal glands playing up is not a good idea. I would recommend that Janann should forget the adrenal test until she has got down to the 3mg level without trying to force the reduction. I would have thought forcing the reduction would have been asking for disaster. There is no hurry to have the test that I can see.
Getting from 4.5mg to 3mg would be part of the call back to them. Of course not in a single drop unless instructed to do so. I was simply implying can it be any worse than it is now...
Would a Rheumatologist really put a patient at risk or dangerous situation if they didn't understand the repercussions?
Regardless, she's in a very difficult situation and needs to have a discussion how to move forward. All I can say is we don't know what the Rheumatologist knows, and why they want her to get off Prednisone, or at least to 3mg for further testing.
My rheumatologist put me at risk because he was so pig headed to think he was all important. I don’t know if you have gone through the deathly fatigue caused by adrenals but thinking about reducing is the last thing on your mind, the symptoms are horrible. As you say we don’t know the answer to why the rheumatologist was saying what he said.
"Would a Rheumatologist really put a patient at risk or dangerous situation if they didn't understand the repercussions?"
Enough have failed to identify potential GCA symptoms and the result has been total blindness for the patient. There are several such cases in the annals of the forum. There have been 3 or 4 in the last couple of years.
Hi Janann25.This is an awful position for you to be in and I know others will be along to advise you further.
Your medical professionals seem to be lacking in not just their understanding of pred, but how to taper safely and how to eventually come off it safely! This is a procedure that cannot be rushed for many valid and proven reasons....to do so will not just risk a re-emergence of PMR/GCA symptoms but will also risk your health!
If there is any chance of seeing another specialist, I would definitely explore that avenue. This isn't always easy though so I'd just arm yourself with as much information and knowledge as possible and speak to them again. Ask all the pertinent questions (like, ' Why do they feel it's safe to taper so rapidly and how are you to manage adrenal insufficiency?').....which incidentally can begin to happen from approx 7mg!
The more confident you sound the more notice they will probably take.
Try not to worry and keep on at them till you get the answers and reassurances you need because simply saying 'I have no answers' is not in this instance an acceptable response. I would have asked for the nurse to put me in contact with someone who could give me an answer then!
As I said earlier, others with more knowledge will be along.
Thank you. I have to admit that I was so taken aback by the response “I have no answer” from the nurse, I couldn’t think what else to say!! I’m not the sort of person who normally gives up easily but at the moment, I’m just trying to work out what exactly is the best thing to do. I’d like to say that I’ll probably feel better after a good night’s sleep but sleep is something I can’t do at the moment!
I completely understand what you're saying. It can be so challenging trying to deal with medical professionals who appear to be giving us conflicting information that doesn't seem to correspond with what we know to be true. You say you're not a person who gives up easily so I know that once you've allowed yourself some time to process all this, you'll be able to re-group your thoughts and move forward in the best way for you. Sometimes we just need to take a step back in order to see the situation more clearly before deciding what to do next.
Try something like Nytol from behind the counter to help you sleep. Out of interest I had a synacthen test done at 5mg and I'm having another one soon now I'm on 3.5mg which will show better results. You probably need help from the endocrinologist. And be Pushy.
Thank you. The advice and support from this forum has helped so much. I have decided to contact privately a very well respected rheumatologist so hopefully I will get some help.
Try a couple of drops of CBD oil for help with sleeping? Can help with pain, too… very popular. Over the counter in any chemist/ Holland and Barrett. I use it now and then, definitely notice it helps with sleep, though some say it does nothing. Good luck
I got the deathly fatigue at 5mg, as you say it was difficult to keep my balance walking around even. Also I found that although I was exhausted I would get to bed and could not sleep. Luckily I am pretty well ignored by my GP so I do my own thing. I have given up on rheumatologists, all four of them, as they really were not helping and wanted me off pred as quickly as possible. Even if you have the adrenal test now, you are no better off.
The only thing I can think of is to get another opinion from someone who realises how difficult it can be to get down the last 5mg of pred. And there is absolutely nothing to say that you can get off the pred without the PMR worsening - 5mg is a long way from zero pred/
Is even a single referral to have a private assessment an option - with a recommended rheumy who treats the patient not a number? It is all very well to insist on you getting off pred but given the problems you now have, it should - IMHO at least - be done under the care of an endocrinologist who may switch you to hydrocortisone which is felt to improve the chances of getting off steroids without as many risks associated with lack of corticosteroid. And if you are in the throes of adrenal insufficiency, you DO need expert care for that to avoid ending in an adrenal
But WHY is it "essential you get off pred"? I have been on pred for 12 years - I haven't crumbled yet and my doctors are fairly laid back about it. I'm on a dose that doesn't carry the adrenal problems, too high for that, but repeated flares and 2 years of non-stop stress have made it next to impossible to get lower and function - and I am a sole carer so what your rheumy wants to do simply wouldn't be an option. All my doctors accept it is a hard situation.
Your GP could refer you to an endocrinologist though how long it would take is another matter. Or the endo could be the private option.
I have lived away from these islands for 18 years, both in Asia and Europe. Love England. Between its problems I still find wonderful people, great sense of humour, its my home!
Imagine someone showing signs of secondary adrenal insufficiency via symptoms and blood tests. Unfortunately, the patient needs to be down to a low enough Prednisone dose in order to perform a ATCH test (Synacthen test), knowing it has potential to becoming permanent?
I'm not implying this is what's happening with the OP, but without knowing the history behind the decisions of the Rheumatologist I wouldn't be so quick to think the person is a total idiot. If it were me, I'd be asking the Rheumatologist if that's what they're thinking, and if it was, I don't think I'd have any choice but to endure the pain to get the tests done (or at least attempt to). But that just me, everyone is different.
If Rheumatologist's would just take the time to explain WHY, it would make things so much simpler to understand what's going on.
This does not seem to be a very good way to be treating you. You are presenting with a serious issue - fatigue and difficulty coping with the requirements of daily life - and you are now being asked to make things even worse, even though you have no one who can help you, or even keep an eye on you in case there is an emergency caused by adrenal insufficiency.
Secondly, as long as you haven't shown any sign of being allergic to pred, or any other concerning issue, why the rush? Many of the people on this forum, myself included, have been on pred for years now, and only a few have been as lucky as I have been, as I was at 2 mg for most of those years. No doctor has ever told me I must get off steroids. In fact, when I had raised inflammation markers about a year ago I was advised to increase my dose. Stupidly I didn't listen, eventually the symptoms kicked in, and for months now I've been in and out of a flare. Still no one tells me I must get off steroids. I've had three different GPs treat me and every single one has given me support. The only glitch was when my first doctor thought, as my journey had been so uncomplicated I should carry on tapering until my pills were gone, "stop and see what happens". well, we found out what happened, which was a major setback, and possibly continuation of PMR for years longer than necessary. After that experience she never made any suggestions about my taper but let me carry on as I felt best. I would hate to think that by forcing you to reduce when you are obviously already in a bad way, following the medical advice will only add to the duration of your time with pred. The thing is, most people do not get off pred for several years, I believe the latest information is that the median duration on pred is close to six years.
You need to take enough pred to keep you feeling well enough to manage a reasonable life. It is possible that your adrenals will start to pick up their pace again if you can taper at an excruciatingly slow rate. Sometimes I think doctors have no idea what "slow" really means for a PMR patient. It's not 1 mg, it's half a mg. It's not a week or a month, it's whatever you need. When I had my adventure getting to zero I spent an entire year tapering from 2 mg to zero. And in the end, I still needed some pred, as I was back on it again within a month. However I do not have many spells of "deathly fatigue" any more, even when my dose is as low as 2, so I can only assume I must still have some reasonable adrenal function after all these years (pred since 2015).
Thank you for your reply and for your encouraging comments. I wouldn’t wish PMR on anybody but sometimes think that if doctors could just experience what we go through for just a few days, they wouldn’t be quite so adamant about what patients have to do!
I do feel for you, being treated so unsympathetically while feeling unwell yourself. I had to sit at 5mgm for about 8 months, unable to drop lower but thankfully not being nagged by the gp. I’ve managed to get to 2.5 but I’ve experienced the deathly fatigue, it’s just awful. The Adrenals need time to begin waking up & do their job, true the pred intake will slow them down but you need to be able to function too. Change the rheumy, you’re entitled to a 2nd opinion. As has been said, an endocrinologist opinion would be good if you can get referred.
HI, first of all you have done so well ! Thats a very high dose for a very long time ! i know just what your going through, i have been fighting for a Basal Cortisol test at my Drs that no one in the practice has even heard of ! I also was told to reduce down to 3mgs of pred , i got to 6 then 5,half before i had a massive flare was so ill for a couple of weeks. It was only because after all the help and advice from the fab people on here that even though they had told me time and time again, i heard but did not listen. Until this last flare , my body and by the sound of it your also is just not ready to go so low . So i took control i upped and them told my Dr/ Rheumy that this is the way im going until i get things under control !! Of course im gutted , but as you sound so similar ,how is your quality of life ? if your so tired you cant function! This is not how it should be. I have many other problems with OA/ RA/ plus spinal problems that were all made much worse by relentlessly pushing to get lower all the time. Its your body take control you will get there ,but in your own time. Im on 10mgs of pred atm and feel like a different person, Think about upping your pred for awhile . ATM im enjoying feeling the utter relief ! Best of luck , you will get there in the end just not today. Viv🌷
Thank you. Please don’t think I’m some sort of shrinking violet! I was a carer for my husband for 10 years before he passed away five years ago so I’m well used to having to cope with problems. I still manage to enjoy life but, at 81, feel I need to have the best quality of time while I can!
Dear Janann25 , I don't think that for a moment in fact quite the opposite, it's awful and you do deserve some respite from it .Now if we could only find out what that is we would be millionaires !🌹🌹🌺😊
How awful and cruel to be honest. Not really the caring side of the nhs.There seems to be an obsession with the age factor ie the younger you are the quicker you should come off prednison.Do you mind my asking how old you are?
Hi My journey with PMR/GCA is very similar to yours in timescale and lowering pred with ups and downs following bouts of UTI’s. I lowered by 0.5mg and am now at 5mg. I have recently had a synthecen-possible miss-spelling - which my rheum arranged for me - awaiting result. She was very understanding and helpful about this.
A result at 5mg doesn't mean a lot unless it is good! If there is pred around, the adrenal response will automatically be blunted and the result will be low. There are people on the forum who had poor results at 5mg, normal at 3mg.
I think you need some sleep. I also became desperately tired and gp prescribed Zopiclone just 3 times a week to avoid dependence. First night of 6 hours continuous sleep and the world was somewhat easier to handle. It has continued to improve as I now have energy to fight my corner. It might not be right for all but it did help me. X
Dear Janann, I'm so sorry that you are having such awful problems. You mention the rheumatologist, but not the doctor. Would a doctor be more sympathetic, as they usually seem more worried about their patients ' general wellbeing ? Would it be possible for you to see or talk to another specialist who might be more understanding ? I hope very much that either is possible and that you soon find a way out of your predicament. A big hug from me in the meanwhile.
Thank you - I enjoyed the hug! And yes, I’ve decided to consult a rheumatologist privately - he has an excellent reputation , so hopefully will get some help and advice soon.
I sincerely hope you get some help now. I was so worried when I read about your problems. Please let me know how you get on. Your former rheumatologist's lack of sympathy and understanding was despicable. 🦋
I am so angry to read this. I would LOVE to speak to your rheumatologist or nurse on your behalf 😡 .
Do you have an understanding GP? Does your GP practice prescribe your pred? I'm just wondering if you could speak to them, and talk about how you are not getting any sleep either. That can't help on top of the stress of an arrogant rheumatologist and a nurse who thinks answers like that are acceptable. I know many on here are only treated by their GP, and am wondering if that is an option for you? The important thing is you need the pred, you can always cancel rheumatology appts
🤭
As you say, you are 81 and your quality of life far outweighs how much pred they think you should be on. You may well need more at the moment. To ignore your worries and symptoms is wrong on every level. Have you thought of writing a complaint about the lack of understanding and empathy you have been given.
The other alternative is to get a 2nd opinion. It may well need to be privately due to the long waiting lists at the moment, but if you are in a financial position to do so, then that might be something to think about.
Thank you but, I have only just had to change my GP surgery and although a doctor very pleasant when I had an over the phone medication review, there was no real reaction when I mentioned PMR.! It’s as it is for many people, DIY medicine😉 , I have now contacted a rheumatologist privately and am waiting for a response
I wasn't going to comment here as I got a little too critical of Rheumatologists on another thread. I do think you have been treated with scant consideration Janann25 and as I have said any number of times, the doctors, consultants, nurses, and administrators populating OUR NHS are there for ONE purpose ONLY. To HELP us get well. Without people needing medical assistance they would have no job. They used to consider their profession a calling where they always put the consideration of patient first. There are still a vast number in the service who truly do still follow this path, but many now see it as a career path to a good income. Too many specialists in particular seem to build little empires to their own particular areas of interest and lose sight of the patients trauma. Some even show an arrogance which leads them to think they are in control and tell you what YOU must do. It is hard but you MUST advocate for your own body and insist on being listened to. I have had a similar experience recently and have taken control. Not on reduction because I am still on a high dose, but on a consultation process which was woefully inadequate and put me in danger. I have just REFUSED a procedure which would have had no satisfactory outcome because of their incompetence. Not only that but a waste of their time , expertise and money better spent on someone who may genuinely benefit. The passage of time for this procedure has been too long for success. I wish you all the best of luck and you are RIGHT to wish for enjoyment from life. Take the expert and sensible advice offered here and be FIRM with your consultants. You have one life LIVE it WELL. Oh, and if you can, a good nights sleep really does settle many niggles, pains and mental issues. If there is some way to get an extended few nights I can highly recommend it.
Thank you. If my lovely late husband were still here, I can hear him offering a hammer to help me to get to sleep 🤣. Oh how I miss his wicked sense of humour 😢
As I read your post I feel so sad for you that your rhumatologist seems so cold and disinterested. Well done on getting down in the meds so far. Im afraid Im not expert enough to give you advice but sure you will get plenty others who are on this site to help you out. Fatigue is a horrible thing. Wishing you well 🤗
You sound like you are in an impossible position. I too have been told many times that people in the medical profession just don’t know how to help me. But don’t give up! Ring your GP practice and insist on an early appointment (it may unfortunately be on the phone!) tell the doctor that you can’t go on like this with so little help and support. I have had a dreadful time tapering my dose and I now follow the advice of the people on here and am committed to the Dorsetlady tapering method and have just told my GP that’s what I’m doing and he has accepted that and just prescribed the right amount of pills. I also told him that I don’t sleep and this has contributed to my fatigue and loss of balance. He gave me a low dose of Amitriptyline and it has made a great difference to my sleeping (although not a natural sleep, at least 6 hours of sleep and I do wake up feeling rested). The rheumatologists know so little about PMR and have little time these days and they seem to have no idea how it feels to struggle with it day in and day out. I just have a chat with mine every four months, tell her how I am feeling and what I am doing about it and she writes a letter to my GP telling him this, as if it had been her idea!It’s hard to insist on good treatment when you are not well, feeling vulnerable and on your own, but you can do this Janann25!
I agree with the others who have said it should help at least to get some more sleep, and your GP can sort out this without reference to an unsympathetic specialist. Also anyone over retirement age who has diffculty coping due to illness may be entitled to Attendance Allowance, which could enable them to employ someone for a few hours a week to do things where they need good balance to be safe. It is not means-tested and is not affected by any capital. Have a peek:citizensadvice.org.uk/benef...
Glad to hear that you are seeking a second opinion from another Consultant Rheumatologist. Your first, I feel, has been severely lacking in understanding and good advice and that includes his rheumatologist nurse. Also as everyone has already said do try some of the remedies to get more sleep. It is so difficult to think straight and put your case forward when you are so desperately tired. All the very best. Let us know how you get on. I hope that writing all your situation down has helped to you to get a focus on what is going wrong- it certainly isn’t your inability to get to 3 mg!!! As has been said before we don’t actually like being on a higher dose and are not just lazy to taper down!!! Jackie xx💐
These feelings are so relevant to me at the moment. So difficult also to describe to someone who doesn’t understand. I’ve never felt so dizzy and disorientated in the two years I’ve had PMR as I do now. It’s happened since I changed from uncoated 1s and 5s to coated 2.5s. I know that surely that can only be coincidence.
I have been taking 5mg for about 6 weeks now.
I’m in Portugal and feeling like a party pooper. I must seem a bit pathetic to the rest of the party. My daughter understands and finally I think my husband.
It’s so hard in this situation not be able to join in, to help much with the chores, to play games with the grandchildren etc.
I was wondering if the hot weather was contributing to the disorientation.
Sorry for the rant but you just caught me as I was considering asking about why I suddenly feel so ill.
Absolutely no apologies needed - as I’ve said before, it’s only people who have been or are suffering from this horrible illness will truly understand. Take care 🤗
I'm feeling for you, I do think maybe a private Rheum. might be the answer for me so hope yours goes well. I have had fatigue dreadfully ever since I started on 40 gms of Pred, in Dec 20. After the initial getting rid of the horrendous aches and pains, apart from my jaw, and the terrible muscle pain, which I still get from time to time down the right side of my neck. Now after following the Rheumat. phone instructions for reducing in January I have got down to 7 mg. fatigue and lack of balance the whole way, the Dr just seems to be happy to follow what he said.
But presumably didn't think I needed any more blood tests till the one I said the nurse suggested for each month before I reduce--- but that is only the blood count thing again I did contact her when I recently heard the hospital had a help line for Rheum and had a tearful conversation with a nurse, in which she agreed he was reducing very quickly, and I said no way was I reducing other than by 1/2mg and that was when I was ready, I had already been on 7mg for 5 weeks. The reply came back from him that I was on track for reduction for 0 in 12-18 months. And my last blood count was perfect at 2 and 2.Then out of the blue I received an appointment face to face with him yesterday. He seemed very surprised when he realised who I was and said the appointment must have been made without them realising I had been spoken to.
I had been waiting for a review with him since it was due in May but they just said some people had been waiting 18 months.
I had a list, most of which he did seem to wonder why I was asking, and didn't answer, so presumably didn't know, like the tingling lip and tongue, like the fact that my jaw had started getting tired if I did much chewing, and I did silly shallow breathing like panting frequently and like the fact that I had heard magnesium was good for balance, he said why take medication you don't need. just said you can have other things not related to TA/ (as he refers to it/ PMR .In the end I asked about my immune system kicking in and he did explain,so at least he knew that much (what I already know from here anyway). Then he took hold of the edge of my list and twisted it over to see if I had anything on the back, obviously my time was up, luckily I hadn't used the back but had time to get onto the fact that I have a numb foot since March and the Neurophysiology department said they thought I had a back issue . The dr said he would have to send me to someone else to see if I needed an MRI scan. The Rheum. said Oh I can book you one of those, and I will send you a letter as well as your Dr about your future reducing after 5. So dismissal.
Had I not been shielding I would have gone out and eaten something very fattening which our dear helpers on here wouldn't have approved of.
By the way i'm sure my balance is improving after a suggestion of taking magnesium but decided to go down the foods with magnesium track, also suggested here.
Take care and I hope you don't go to the same hospital as me.
I’m so sorry you are also having problems with your treatment - as I said in reply to another forum member, I sometimes wish doctors could experience PMR for a few days, just to understand how we feel!
67Blue, that is unacceptable. It is rude and dismissive. One gets the impression that many Rheumatologists see the patient as a number, research and income source not as a person.
"... which I still get from time to time down the right side of my neck"Sternocleidomastoid muscle tightness - which can be part of PMR and does respond well to non-pharmaceutical measures.
" like the tingling lip and tongue, like the fact that my jaw had started getting tired if I did much chewing"
I would be suspicious that the tingling lip and tongue MIGHT be poor blood flow to the nerves - supported by the fact you are showing early signs of developing jaw claudication when chewing.
I think you need another opinion. Because he is treating a textbook (though not sure WHICH textbook) and not the patient in front of him. The fact the blood markers are OK only shows there is not yet inflammation present for long enough and intensely enough to trigger the liver to produce the proteins that raise ESR and CRP.
Both the sternocleidomastoid and back muscle problems you describe could be improved by therapeutic massage and physio - not that the NHS does hands-on stuff these days which you do need to loosen up the muscles first before you can then start with exercises. If you have the option, Pilates would probably help tremendously but only with a good aware instructor.
Thanks for that, you are a mine of information, when I said should I get my dr to cancel the appointment he had made for ????skeletal ??? something or other to see if they thought I needed an MRI scan he said no leave that don't mess with the Drs, they may sent you some exercises. But they wouldn't be much use if i need things loosened first. Who knows how much better it would be if it wasn't for the dreaded covid. I did tell the nurse, tearfully unless I had covid I didn't want to hear that word again, and to think I grew up in OZ. Mind you things are going to change there, when my sister said NSW was telling their people that they could have Christmas after all these lockdowns it all sounded a bit familiar and very premature.
Musculoskeletal services are often not even doctors - I saw a physio with an extra bit of paper, long before PMR was suspected! Showed why he shouldn't have been seeing rheumatology patients by asking could I touch my toes - which I still can 15 years later, can even put my fingers and almost my palms flat on the floor. So according to HIM there was nothing wrong with my back because he couldn't touch his toes. It seems he'd never heard of hypermobility syndrome which is quite common amongst rheumy patients, especially lupus, and it is what causes some of the problems.
Ramble all u like Janann . I stopped listening to Drs years ago about steroids and listed to advice on a Brit health sight. . Those who suffer and tried many things have more understanding . All the best
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