Hi, everyone! Please forgive me if this request is long winded, but I'm lookingfor solid advice. I am absolutely and utterly exhausted. I was diagnosed originally as having GCA but have been told its fibromyalgia instead, as I have been in chronic pain all over, even whilst taking 60mg of pred daily for 8 months. I have gradually tapered down quite slowly to 4mg after 2 years. I have been stuck at 4mg for over 2 months now. I have been exhausted since before last Christmas but thought I'd get over it, but it only got worse. To add to this misery, I had been put on Duloxetine 14 months ago and they gradually increased it from 20mg to 90mg as I said it wasn't helping and it made me feel worse. I told the doctor I wanted to stop taking it as it was pointless and to me, and it is a very poisonous drug...just my opinion. I have gotten down to 30mg Duloxetine, and the withdrawal from them over the past 3 months is terrible. Anyway, I went to see my doctor (amazingly, as they are so short staffed and I have received little guidance or input from doctors at my surgery), and will have a blood test on Tuesday to check my ESR...(but not my cortisol levels?) I am desperate for advice as I can't function. I have read the symptoms of adrenal fatigue and I have every symptom, even down to my abdomen which feels like its on fire. Even brushing my teeth is taking everything out of me. I have never felt this tired in my life. As I have been left to get on with everything by myself, its now apparent to me that I may have mistakenly tapered too fast and I feel I have to increase my pred. The question is, by how much do I increase it and for how long? Sorry for the book, but you are the only experts that I trust. I try not to complain and get on with it, Also normally have a great sense of humour that helps me cope and laugh at myself when I feel a bit down, but it has gone beyond the point of humour now. This exhaustion and feeling of being so poorly has made a coward of me I'm afraid.
How much do I up my pred?: Hi, everyone! Please... - PMRGCAuk
How much do I up my pred?
In my opinion and going by what you say you appear to have been treated abominably. Have you had any investigations that might have led to a firmer diagnosis-MRI? X-ray? PET-scan? Ultrasound scan? These are not only used for diagnostic purposes but also to rule out conditions.
Your long term exhaustion and chronic pain need to be taken seriously by your GP and I would insist that these symptoms warrant specialist input. I’m not at all convinced that upping your prednisolone is a solution for your catalogue of problems but let’s see what the experts here say.
I am not surprised that your sense of humour is currently absent. It really worries me when people suddenly have their diagnosis changed- and so radically. GCA is quite specific, especially when is is of the Cranial type. Presumably your symptoms were relieved in the first instance. Pred has no beneficial effect on Fibromyalgia. Also 2 years, is very short duration,contrary to some doctors’ lazy repeating the 2 year myth, most people average a 5- 6 year duration. Fibromyalgia, also has a clear mapping of painful areas that should aid diagnosis. My own GCA did not effect my cranium, so the headaches, jaw claudication and eyesight issues were absent. My diagnosis was made on the basis of the halo effect in my arterial cells during a specialist ultrasound scan. Under treatment with Pred, I don’t think the signs would be so clear. I felt pretty ill with constitutional symptoms. Some doctors seem to dismiss PMR and GCA because the clear signs are no longer visible and the CRP and ESR blood tests have returned to normal with Pred. This is astonishing, to me. 60 mgs of Pred for 8 months is far too long as well. I really feel that your case has been mismanaged on many levels and you desperately need a doctor who understands these diseases. I also agree that you need input from an endocrinologist. 60 mgs of Pred for 8 months, may well have damaged your adrenal system. Perhaps we could recommend a good Rheumatologist if you give us a rough idea of where you are? I travel to Leeds from my home town for an excellent Rheumatologist. I don’t hold myself up as an expert. I am just another patient like you but I have had the benefit of this knowledgeable website for 7 years and a top Rheumatologist.
To be honest, I don't think that the doctors really knew what they were dealing with from the start, as I was given steroids right away and therefore that prevented me from getting a firm diagnosis. I was repeatedly told I was too young to have GCA even though I was 60 at that time. It has lead me down a rocky path with nobody in particular in charge. I had massive head pains and the steroids helped this headache right away.. the problem is that fibromyalgia can cause these types of headaches too. The rheumatologist i eventually saw told me that she thought it was fibro alone, so that was that. I have had chronic pain for years, so I went along with it. That may be true but she also said there was no way I to properly diagnose as I had been on steroids for a long time and they wouldn't be able to scan my brain to determine anything. I am in the South Wales area and was told that this is the worst area in the UK to have possible GCA and get a proper diagnosis. I think they have the longest waiting lists too, so getting an expert on the case would put me on a very long list. To compound everything, the surgeries around here have a acute doctor shortage.I am going to speak to the nurse tomorrow to ask what other tests are being conducted from the blood draw. I also would want to pay for a private blood test to cover anything the doctor may may not request for testing. Not sure until tomorrow. At this stage, I am too exhausted to chase it, but I'll do my best . Im not a very good advocate for myself at this time.
Best of luck, let us know how you get on. Horrendous situation for you. I have fibro, as do others here, with pmr, etc. Everything gets muddled you dont know what the issue is at times. I hope you get some proper help. Its scary how many of us have been mismaged but yours is horrendous. I know what its like when you get so unwell that its hard to bring things back. Good luck with blood tests.
You poor thing! This is horrendous. What an example of mismanagement.
Apart from anything else, you definitely need some input from probably 2 consultants- Rheumatology and Endocrinology. You could pay for this if you are able? I went through 4 Rheumy's to get one who was knowledgeable and sensible enough to cope with my very different PMR journey. ( Rod Hughes in Surrey). I found it is worth travelling to get the right care. If I recall, there used to be a good Rheumy in Bristol? Maybe others can comment on this?
I think your situation needs a whole new approach, but try to ensure that you get the right experts to do it!
The first thing that strikes me is that your awful headaches were helped by Prednisalone. That is a diagnostic indicator. Incompetent doctors may have inadvertently saved your eyesight, thank the Lord. It would be possible to have Fibromyalgia alongside GCA and or PMR, people on here do. What concerns me is that Fibromyalgia is often a lazy diagnosis for non specific but debilitating pain. It seems to let the doctors off the hook because there is little effective treatment. You are NOT too young for GCA as you know. A lot of us are around that age and many are much younger and some are a lot older. Of course you are too demoralised and exhausted to fight your corner and you shouldn’t have to. At least they could do the simple morning Cortisol test to see if your Adrenals are struggling. This can be done by a GP and if this test shows a problem, then you need a referral to an Endocrinologist. You need a whole raft of tests for your current symptoms. I have lost count of the CT scans, X Rays, MRI Scans, ( head, full body, vascular) various full spectrum blood tests, urine tests, that I have had - colonoscopy, endoscopy camera capsule investigation. Nothing has suggested that my GCA Large Vessel Vasculitis was wrong, they were looking for the condition spreading and co-morbidities. I would travel to see a Rheumatologist who knows about these diseases. Do you have a friend or relative who can advocate for you? You express yourself very well on paper - perhaps a comprehensive letter would start things moving? You could do a separate post here to ask for recommendations for a good consultant Rheumatologist. Mine is Dr Sarah Mackie who is based in Leeds and is a leader in the field of GCA and PMR and does plenty of research and is a lovely doctor to boot. She is based at Chapel Allerton Hospital mostly. An hour with someone like her would undo this muddle.
Sounds like quite possibly inadequately managed PMR symptoms to me. Confusing a diagnosis of GCA and fibro is pretty difficult - what were your symptoms for GCA originally? I see you have seen a rheumy - did she also say you are too young at 60? Not at all - even the over 50 age range is only a recommendation, the youngest GCA patient I know of was in South Wales, 37 years old and definitely GCA as it was found by the pathologist - they always get it right!
dailypost.co.uk/news/local-...
There are other cases of similar ages reported in the literature - it is rare but it happens.
It is also perfectly possible to have both PMR and fibro, we have several members on the forum with both. Most of them say they can tell the difference.
But yes - I fear Wales in general is a bit of a desert for good rheumies.
Hi. Yes, I have seen two rheumatologist. One that I paid for, and he spent 10 mins on me, told me I was too young again didn't do a thing. That cost me £200. The next one i saw through the NHS and she said that I was too young and put me on Duloxetine for fibro. I have spent my life savings on trying to get a diagnosis and treatment, so it looks like I'm left beholden to the people who are not willing to consider that I might have fibro and PMR. I believe you're correct! I was wondering if untreated PMR would cause this debilitating tiredness. I just want an end to it all. I'm going to have to keep on them.
They are both wrong about the age thing. I honestly don't know what to suggest - because referral out of area in Wales are next to impossible. Move????
I wish I could move. I have been told by a few well regarded people in the field in England that its impossible to deal with the the Welsh government as they have let quiet a few people die rather than send them to England for treatment. Even after having a hearing on the subject. So its politics over people and they just don't care. Its beyond negligent.
Devolved government shouldn't mean devalued government - but it appears like that in some areas..
Sorry to hear the problems you are having.
You're right. My mother was Welsh and I was actually born here but brought up in many other places. Im not sure what's going on with this government, but if they're letting people die rather than allow patients to be treated in England or following treatment plans from an English specialist, then there's something real sinister going on.
It is a refusal to send money back to England to purchase the services I suspect. A friend over on the Lupus forum has been fighting their battle for years. Wales considers that adequate care for a lupus patient is a "GP with a special interest" and tried to refuse an out of area referral. Trouble was - the GP with a special interest had left. Left hands, right hands, no hands ...
There's just no getting around it at this time, but on my next burst of energy (mentality as well as physically) I intend to use their own constitution to point out a few things. Like it or not, they're still accountable. Thanks for your help ❤
I agree with SheffieldJane’s comment regarding trying to get someone to advocate for you and I understand the difficulty of speaking up and questioning ‘professionals’ when you just want to curl up and wish it all gone. The following link contains advice about NHS advocacy to which you are entitled when you feel you have been mismanaged. I hope you’ll feel up to looking into this; something needs to be done to help you out of your situation and on the road to better health:
nhs.uk/conditions/social-ca...
In the meantime, I’m sending every good wish for your upcoming appointment.
Thank you so much for sending this. I don't think this surgery has got it together since the Covid outbreak. For example: I order my prescriptions via email and have to chase them to see of they have been sent forward to Boots. Lately, I have sent these emails with a 'read receipt' so that we mutually know when it has been read. I sent my Prednisone 1mg request out on the 12th April, it was read on the 13th. When I called them this morning to say that I had not received this prescription from Boots yet, I was told that they hadn't received it. I called back with the details of when they received it and who read it. She eventually found it and is not trying to send it to the doctor for her signature. I told her this needs to be urgent as I need this asap. She just said I've sent it to the doctor and that's all I can do. Its like this in lots of areas around here now. You cannot drop the ball and you always have to chase them. I sent another request for 20mg of Duloxetine as they mistakenly sent out 30mg instead. Its totally ridiculous. Who gets the blame? Why, the patient does, of course. Im going to be in contact with that NHS Advocacy depth to see what can be done in a civilized manner...without accusations and slandering. If I don't get any help, then I'll take it up a notch. Thanks x
I do so hope you get the help you need and yes, I very much agree with the respectful and polite approach. I had cause to complain a while ago and wrote to the hospital department with my concerns and what I would like to happen next. I was ‘heard’ and my requests were complied with civilly without my having to take my complaint to a higher authority.
You may be interested in the following if you can face more reading:
gov.wales/nhs-wales-complai...
Please let us know of any developments as and when..no pressure.💐
Thank you for this information. I really appreciate it!
This is dreadful. I am so sorry you feel so run down by it all. 4mg is low enough to feel the lack of cortisol if your adrenal activity is low; mine was at this level. It is easily still high enough to be partially suppressing your adrenal glands and a test may show an expected low that should improve as you reduce Pred and keep challenging the body to respond. A low result at this point wouldn’t necessarily mean there is no hope of them getting better. Going back up just shuts them back down again, plus above 4mg tests are often seen as pointless because of this shut down. Your sustained high doses of Pred may make this low Pred dose challenge a longer process. Mine took many months of reducing 0.5mg over anything from 8-14 weeks. I still felt pretty ropey at times throughout but by 1.5mg I felt some more good days.
You have the added confusion of withdrawing from Duloxetine which can add to the symptoms. I might ask the GP, since they are doing tests anyway, to check the early morning cortisol to see if you have any cortisol in the tank at all. If they say no, you could ask what they advise for knowing how close you are to adrenal crisis given how ill you feel. It may be worth asking for a referral to an endocrinologist in view of your unusually sustained high dose of Pred. If it still a no, you could ask who will be taking responsibility for monitoring your adrenal function after such high doses for so long. Sometimes nicely asking who is taking responsibility can concentrate their minds a bit if they are going for a fob-off.
Who was responsible for keeping you on 60mg for 8 months? Why did they keep you there if everything was so undecided?
You can have both Fibro and PMR/GCA together, they are not exclusive either or.
Well, I feel a little more assured after reading your response. Perhaps tapering off the Duloxetine has amplified the effects of the pred taper. I really don't want to increase the pred as I have already been struggling with this for so long that it seems pointless; however, if I do indeed have PMR along with fibro then ill just have to bite the bullet and get on with it.The doctor who kept me on 60mg for that long has since left. The idea was that I was still suffering a few very scary headaches and it was supposed to be an assurance that I didn't lose my sight. It may be a contributing factor as to why I have been suffering for so long with withdrawal. I'll check in and let you know about what the plans are. Currently we are asked not to call our surgery to ask for an appointment unless its an emergency. Its apparent that they're having many issues, so how would I expect to have decent treatment. I just want to know what I can do to help with this exhaustion in the meantime.
Do you have any family or friends in England who would have you to stay for some time?
No, unfortunately all of my family are in Wales now as this is where my parents settled after my father serving in the Army.
How far are you from the Welsh/English border? If not far you could try a walk in centre in England. I live in England but went to a walk-in Centre the other week as I couldn’t get a nurse’s appointment to check a blocked ear. I had sudden deafness and as with anything GCA-ish I assumed it may be linked. The nurse at the walk-in diagnosed excessive wax, told me to put ear olive oil ear drops in and make an appointment in two weeks at my surgery for syringing which I did. If you need to see someone even semi urgently and can do that I would recommend it.
That's great. Im glad you were able to resolve it. I intend to go to Bristol if I need to. I just have to wait to find out what they intend to do after the blood test. Its waiting aroundike this that gets me. Yes, being calm and civilized is the best approach, but sometimes.....
Good idea if you’re near Bristol. The waiting is what gets me. It seems to be a real post code lottery. I now get blood test results, consultations with my GP on my NHS app. They are swift uploading info - probably preferable to have me ringing them for the info! The hospital bloods don’t show but I ring the day after those tests and the helpful medical secretary tells me those prior to my rheumie appointment.
That's good info. Thanks 😊
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