I am six month into PMR. Started at 20 mg but dizzy so reduced to 10. Now my dr has me starting to taper. Within a month down to 7 and felt fine, but on 7 am now exhausted and at times have a slight headache. I emailed my dr about the exhaustion, three times now, but he has not called or written to tell me what to do -- I think obviously I am not ready to try going down to 6, which I was supposed to do this week. So I have stayed at 7 and then added .5 the last two afternoons, which picked up my energy. I used to drink another cup of coffee to pick up energy but I've read we shouldn't drink coffee. Tonight I emailed my dr and said I really would like his opinion, that I am winging it on my own except for this support group, which I am truly grateful for! It is hard not to fall into anxiety at times.
Tapering, exhausted: I am six month into PMR... - PMRGCAuk
Tapering, exhausted
Hello, it’s horrible feeling unsupported medically and unfortunately it seems to be happening more these days. From the brief outline you’ve given there are two obvious possible issues here. One is that you have reduced far faster than your PMR requires and two, that you are in the dose range where adrenal function issues become apparent if they are going to. Your adrenal glands produce Cortisol, a weaker natural version of Pred and is essential to wellbeing, function and indeed life. The adrenal glands only make it if the brain detects low levels and we make about 8mg an average day give or take. Since the more potent Pred has been in your system in bucket loads your adrenals switch off but now you are at 7mg and under they have to wake up and work again. This can take a while and can make one feel rubbish and time is the only cure. There is no short circuiting this phase while your body sorts itself out. Do have a read of this, essential reading for those going under 10mg Pred. Sometimes people’s adrenal glands don’t bounce back and an Endocrinologist’s input is needed but that’s not until you are well under 5mg.
healthunlocked.com/pmrgcauk...
As for your PMR, how does that feel?
Thank you SO much! This is very helpful! My PMR has been fine, no pain at all except for an occasional headache, though not bad enough to take a Tyelenol, but enough that the dr had a temporal biopsy done -- it didn't show GCA but there is some inflammation that showed up in a couple of places. So he's watching it.
Hi SnazzyD! What a marvellous explanation! New people to this weird illness need this kind of support. I know I am way along the success route at tapering 0.75mgs, due only to this marvellous forum as I haven’t been in contact with my doctor now for over a year, but it is so good to have this explanation to keep me on the right track. Many thanks.
SnazzyD has given you link re adrenals, which is probably the major factor, but your whole situation has not been helped by a quick taper - albeit that the dizziness was causing an issue at higher doses.
Definitely no further reductions until you have got a bit more settled …and staying at 7.5mg for a while [at least another month, or maybe two] will give your adrenals a change to catch up.
Have to say that as are you are paying your Rheumy the lack of response is appalling.
At times he has been responsive and others not. I never know which it will be. Luckily my primary care doctor is great and he always responds so he's the one I ended up talking to about this, but since he's not the rheumatologist he can't just change the course. However, I plan to firmly tell the rheumatologist how I feel about this. It was bad enough to feel horrible physically without feeling I had no help from him. Medical care has definitely taken a bad turn -- doctors are overworked with administrative work and record keeping and many have just had it and are retiring early.
Unfortunately seems to be a world wide problem - and paperwork is just becoming more and more.. the senior partner and my designated GP retired about 5 or 6 years stating same thing. He said -paperwork, dealing with finance and complaints is not why I became a doctor, so he took early retirement and now works for the local air ambulance service.
I received a message to say that the waiting list at my surgery is 4-5 weeks for a non urgent appointment and they are already working beyond safe limits. Why is this not any politician’s priority?
They were no help with the inevitable fatigue from the disease or the Adrenal recovery phase or simply tapering and adjusting to a lower dose. I have been managing it by going to bed relatively early and having a regular 90 minute nap (my body’s choice) in the afternoon ( proper going to bed to the soothing drone of an audiobook). This enables me to function during the day when I pace my activities.
This morning Sky News reported on a survey study that has found about half of trainee GPs drop out or leave the field within 8 years of entering training. Similar figures for nursing students, The conditions are too much for them - nurses can stack shelves at Tesco with no responsibilities, regular hours and better pay. Brexit meant many EU doctors went home, the Home Office is making it unpleasant and difficult for other nationalities to come - they feel unwelcome. And you know why your lot went to Oz,
I haven’t felt this upset by a government since Mrs Thatcher. This is worse, much worse. The destruction of morale and talent is wanton.
I am glad that my family got out although it broke me. My son in law now runs a clinic for skin cancer diagnoses and treatment, after an early morning surf. A bit better than a ground down, under appreciated, U.K. GP.
I have actively encouraged my lot to go but all they seem to do is provide more NHS fodder. Grandson No1 is a nurse, No2 has been doing community pharmacy but probably heading to the USA (which might be even worse), granddaughter announced last week she wants to be a paramedic.
Thank the Lord for them and others like them. I would happily pay more tax to support them.
I agree Jane. 👍
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👍 In 2021 my brother was cared for at the Marie Curie Hospice in Hampstead. He was so lucky as they were working at 50% capacity having had to close a whole floor due to the exodus of their Spanish nurses after Brexit.
A GP son of a friend, qualified for ten years said most of his contemporaries during training had left for Oz or the USA.
We are really making such a mess of things. It is hard to watch.
I have reported my local GP's to my MP (Conservative). He has responded (after much prodding from me) and selectively answered some of the points raised. The rest he has passed on to the GP's who responded with much indignation and requested an appointment with me so they could "discuss my concerns". The MP didn't tell them who I was for reasons best known to himself. I have yet to decide whether or not to contact the GP's. It's a bit ironic to think I can get an appointment with them because they're put out!!!
I'd certainly take up the offer!! Is the problem sort of generic to the practice or more about specific members of staff?
The staff are brilliant. The GP's are not. They have an amazing staff turnover and I'm not surprised. It is totally beyond my comprehension how these 3 GP's get away with treating their patients with such contempt which is why I contacted my MP. This is a work in progress as far as I'm concerned - I am lulling them into a false sense of security and then I'll strike again! I've been quite ill recently (and no, the GP's wouldn't/couldn't see me) plus my little dog died earlier this week so I've had other things to think about. However, in a week or so I'm hoping to feel a bit better and then they need to be afraid, very afraid!!
Agree with PMRpro-at least they have made the offer to discuss…and take someone with you, if only to listen.
Mind you - when a GP was sent to the house to ask why I had told them they were cr^p, he had a set of excuses in his pocket. I said I thought I was fairly justified when their laziness had almost killed my husband - if they had sent him for a walk-in chest x-ray instead of 3 lots of abx and then assuming it was asthma it might have been an easier year. After all, he did work in a hospital!! And all I was asking for was scripts for his medication in soluble form - which they denied existed. Funny how I'd found them in BNF and the oncology ward managed it - and once THEY had done it, the GP had to as well, But it was all my fault - as was the fact his colleagues had got a plan together before telling him what was on the x-ray that one of them had ordered. I wasn't even there ...
Daunting as this must be, take a supportive friend or family member, I think you need to follow through. We cannot evoke change without speaking up. Make some notes of the points you need to raise. Make notes of the responses you get from the GP. This needs to be an open and honest exchange. You then need to feed back to your MP. We are all experiencing this. Good luck! Let us know how it goes! 🍀
In my area, the first two years are dealt with in primary care and only after that was I referred to a rheumatologist - though he is def more informed than my GP so if you have a good primary care team then I would sack your rheumatologist, personally. I have moreorless stopped talking to my GP about PMR, though still go to the practice for regular things
I agree with sacking the rheum. My new GP (family practice doc) insisted I see a rheum, and what he told me was that I should have seen an Internal Medicine doctor, lol, which my husband is! They treat older people almost exclusively and have dealt with most of the PMR in our small rural town. He now fills my rx for whatever I need. My GP refused to fill a 1mg request until I saw a rheum!
The rheumy I saw refused to diagnose PMR and showed his aggravation that 8 months into this agonizing situation I was already on steroids. I think all he did was rule out RA and fibro. My GP is terrified of steroids and thinks getting off of them is imperative. I'm a lot more terrified of wasting my last good decade of life, wallowing in pain and disability.
Who was it here, (PMRPro?) who said 75% of us never see a rheum?
Not a lot to add to Snazzy's comments - too fast a reduction and now your adrenals are being unwilling to wake up quickly. Patience is the only answer I fear.
As for coffee - the odd coffee isn't going to hurt, it is mostly woo sites that believe in adrenal fatigue that say not to drink it, The adrenal glands don't "wear out" or "get tired" - in our case the effect is the fact we have been on pred which does their work of producing cortisol for them and the set-up takes time to get up and running again when the pred is lowered or taken away.
This is great news! My morning coffee is a MUST! My son used to say to his friends when they would sleep over, "Don't talk to her until she's had her coffee!"
Hello, Paulagcl. I agree with Snazzy in that I feel your pred has been reduced too fast to properly manage the inflammation in your body. To make things clearer perhaps you could you add a bit more to your bio giving approximate dates of reductions and doses and symptoms along the way.
Dizziness can be a side effect of pred and in my opinion your doctor should be investigating this especially as headaches are involved. It’s hard to be proactive when you are feeling so poorly and when the person managing your disease shows little interest it’s frustrating and concerning. Is your doctor a primary care physician? I suspect that he knows little about PMR. He shouldn’t be advising you to reduce your meds while your symptoms persist. I do wonder how many cases of PMR he has managed.
I hope you receive a reply to your email soon. Let us know if/when you do, please. If you don’t hear from him within a reasonable time (1-2 weeks at most) or if in the meantime your symptoms worsen it would be prudent to change your doctor.
I hope you get answers really soon.
It's my rheumatologist who has not responded. Luckily my primary care dr is responsive , supportive and an excellent doctor. He agrees with too fast a taper. But the rheumatologist
of course is in charge of this. I did email him tonight saying that I have made it through this weeks thanks to my support group (applause to all of you writing to me!) and that I want his opinion as to how I should proceed from here.
In UK most GPs (primary care doctors) are quite able to treat PMR -and do. I appreciate it may be different in US -but a good GP is a million times better than an indifferent/unhelpful Rheumy
Sounds like the Deathly Fatigue. I just gave into it!
Change your Rheumy seems the way to go. We certainly don’t need EXTRA stress caused by such indifferent care. I would take a copy of Dorset Lady’s Slow Taper scheme to show to your local Doc and tell him this is what you want to do!
I really do wonder about some of the docs - as we read continually on this Forum they simply do not listen to the patient. Very Victorian and appalling…. and not assisted by inadequate staffing etc under this government.
When I was first diagnosed in August 2020 I was told by my rheumatologist that I would have PMR for at least 3 years, maybe more. I was started on 15mg prednisolone for 3 weeks, then reduced to 10mg for a further 4 weeks, then down to 7.5mg where I've remained until 2 months ago when I started tapering on alternate days 7.5mg/6.25mg. Even this is quite a reduction and I can feel the difference. I was more positive, relaxed and physically more flexible on 7.5mg and would have liked to remain on that dose indefinitely but if I don't taper I won't know whether or not PMR is going into remission. It's a bit of a catch 22 situation for me. All the best to you.....
I reduced to 7 a few weeks ago and hit the wall with pain and fatigue. Figured I had given it long enough so I went back to 7.5 a couple days ago. Feeling much better. Thank goodness for the wonderful people of this site which reminds us we aren’t reducing relentlessly to zero. Best advice in the world.
I started at 50mg little over a year ago I had to go to 60mg to get the upper hand I am hanging at 10mg after slow taper to 7.5 all seemed well until I dropped to 7 and a ugly flare ensued we had been on vacation did some walking I didn’t heed the warning my body was giving me and wanting to get to 5mg by end of the year wrong idea I also take methotrexate injections because I couldn’t get below 12mg listen to your body not a Dr. Who has never had PMR take care hope you feel better
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