8 months on pred - Update from recent bloods

[Gimme]

I saw the nice lady GP today about my recent blood results from 5 Sept 2023:

CRP less than 5 mg/l

ERS 14 mm/h

Rheumatoid factor less than 10 iu/ml

Anti-nuclear factor negative (less than 1/100)

Iron, B12, folate and Vit D levels OK.

T4 and TSH normal

Hb a1c 39 mmol/mol - so 9 months pred hasn't put me back in the pre-diabetes zone yet.

Weight fairly stable but put on 2 or 3 lbs.

FBC all within acceptable range.

Neutrophils 7.84 (normal range 1.5-7.2) - slightly raised due to pred?

So on the face of it, I look pretty healthy. So why do I feel so crap then?

I felt like I must be making all this up, but I made a list of my symptoms and they covered 2 sides of A4. On paper, I look pretty unwell. I showed the GP my list and she said, oh, this does look like PMR, and I reminded her that that is why I am on pred.

I pointed out that some of my symptoms might indicate Sjogrens and was there any reason to exclude that, as this stage. She said that she would speak to rheumatology for advice and she is going to call me.

I mentioned the painful glands under my jaw line that I thought might be salivary glands and she said that I was actually pointing to my thyroid, so she examined my neck and wants me to have an urgent neck scan. Thyroid function shows as normal in my test results.

So almost a year down the line, from a tentative diagnosis of PMR in Nov 2022, I'm not sure that I am any further down the line. Whatever you want to call it, I do have a polymyalgia of some description, affecting almost all of the larger muscles in my body, that is extremely responsive to prednisolone. The first dose of 15 mg gave me 90% relief within 4-6 hours. When I saw the grumpy rheumatologist about a month ago, he thought that I had had PMR, but he thought something else was going on and wanted me off pred, as he thinks there is masking. I am on 5 mg pred currently and off to Bolivia in 3 weeks and the GP doesn't want me to mess with my dose until I get back.

It seems to me that PMR is not the whole picture and I have thought that all along. My inflammatory markers have never been raised and yet I feel really ill at times. The fatigue, on and off, is overwhelming and totally debilitating. Even when my mobility is fairly good and pred keeps the pain and stiffness at bay, my muscles tire easily, I tire easily as a whole and I need to sleep after not much physical activity to recover. My mental health and overall physical fitness has suffered because of it. I was always so slim and active and now I feel like a pudding. I tend to minimise any health issues, because of my childhood upbringing, but even I can see that there is something really not right about my body and that has been the case for a very long time. This can't just be ageing. When I compare myself against other healthy people of my age, it is clear that something is not right. And when I compare myself with the people in this group, I have so much in common, even the random stuff, that I hadn't thought were connected.

I don't really know what my question is here. How much longer before I get a firm diagnosis from someone? Will I ever get one? And where do I go from here? Or do I put my control freakery to one side and stop trying to fix things and just sit back and enjoy the ride while I go through the whole process? This is the first time in my life that I have not been able to beat something just with my own sheer bloodymindedness. Perhaps that's how I ended up in this mess in the first place.

[Sharitone]

I can't give you any scientific wisdom but if you have PMR that is still active, then that is enough to explain why you feel so crap. Some people feel reasonably ok when on a sufficient dose of pred, but plenty don't and are permanently knackered - we are all so different and PMR/GCA/LVV is actually a sort of spectrum of disease.

I do hope you get some answers before your trip to Bolivia, because it would be a crying shame to have your holiday spoiled simply because you were having less pred than you need.

[Gimme in reply to Sharitone]

Thankyou for your support. I'm not going to lower my dose until I come back. I have plenty of pred to keep me going until well after I got back. One of the first things that I noticed in this group is how keen rheumatologists often are to get you off pred too quickly and (without actually stock piling) I did decide to make sure that I always have enough to get me over any blip or to ease any enforced tapering. Anyway, Bolivia is a trip of a lifetime and I don't want to mess up. I need to keep swimming as much as possible to improve my stamina before I go and for that, I need the pred.

[PMRpro Ambassador]

"Thyroid function shows as normal in my test results."

It is not uncommon for thyroid patients to bemoan that test results do NOT reflect the true state of things. Loads of discussion on thyroid forums.

The pred only manages the inflammation and relieves the associated symptoms - it does nothing for the actual underlying autoimmune disorder and that can still make you feel pretty mouldy - especially if you try to do a bit more, much like attempting to do normal things when you have good going proper flu. At 5mg you are also in adrenal territory and that really CAN make you feel appalling.

As for the GP, she sounds a bit of OK - and if you need a bit more pred for that holiday, I wouldn't feel in the least bit guilty. Those sort of events only happen once in a lifetime.

The rheumy may well be right but I'm not too sure the pred at this level is really interfering that much. And as I say - adrenal insufficiency is also "something else going on".

[Gimme in reply to PMRpro]

Thank you. I do agree about the dose level that I am at. I am mindful of the fact that I don't know whether how I am feeling right now is due to the PMR, the pred or the adrenals. I tend towards the autoimmune activity still being very active. the GP said that I would feel a lot better when I get to 2-3 mg, but I'm fairly certain that I am not ready to reduce that far yet. My symptoms start to reappear around 6-7mg, so I think I am taking slightly less pred than I need, and I can just about manage here. Whilst I would love to come off the pred, I really am not confident that further reduction is wise or tolerable right now.

The thyroid thing kind of came out of left field a bit, although an ongoing issue has been in the background for years. Tiredness has always been an issue for me. I have been having just about annual checks for the last 30 years. I am 65 now. My T4 and TSH has always been on the low end of normal. When I got back from the doc's, I had a quick look and it seems that inflammation of the thyroid aka thyroiditis can be present with normal thyroid function and that is likely to be autoimmune. I think the thyroid is possibly just part of whatever the autoimmune thing is that is going on for me. As well as my muscles, my thyroid seems to be under attack.

[PMRpro Ambassador in reply to Gimme]

"the GP said that I would feel a lot better when I get to 2-3 mg"

He did, did he! More dodgy crystal balls! He cannot know - and it entirely depends on whether the underling cause is still active or not - and it often is. That is also pretty critical with adrenal function for many.

You may THINK you can manage - but the dripping tap analogy applies here. Even the slightest bit of left over inflammation risks building up over time and you may end up back where you were at the start. And as long as the underlying autoimmune disorder is active - you need enough pred. No-one really believes us until they experience it for themselves but we promise, we are NOT exaggerating.

[Gimme in reply to PMRpro]

Ha! That actually made me laugh out loud. Victoria Beckham may have Mr Golden Balls. I get Mr Dodgy Crystal Balls aka mr grumpy rheumatologist.

Thank you for making me giggle.

[PMRpro Ambassador in reply to Gimme]

All part of the service

[MDT1 in reply to Gimme]

I have been hypothyroid for many issues but it took ages to diagnose because my blood results were only just off kilter, once treatment was started I felt so much better. Its that same old problem, we all have different 'normals' and my GP deffo bears that in mind when interpreting MY results for MY body. Good luck

[LucilleG]

I agree with Sharitone. You were diagnosed with PMR less than a year ago and are now at 5 mg of Prednisone. I was also told to taper quickly and had so many of the same symptoms as you in my first year. Just for some background, I was diagnosed with PMR May 2021 and started at 40 mg (there was the possibility it could also be GCA, so the dr was being safe.) I have had a few flares and I have now, just over 2 years ago, tapered to 4.5 mg and will stay there for 2 weeks to be sure it is the right dose.

Of course, I can’t say if you have something else, but just from what you’ve written, all of your symptoms can be from just PMR, as well as being on Prednisone, along with too quick a taper.

[Gimme in reply to LucilleG]

Thank you for the reassurance. Sorry to hear that you have had a rough ride aswell. Perhaps what I am going through is just normal for PMR, and I need that validation. I always expect far too much of myself. It would be nice to think just the PMR (never thought I would ever say that), but I could do without them finding anything else. I do think that the autoimmune illness is still very active.

I did decrease the pred very fast. Unfortunately, the pysch effects at 15mg were intolerable. I live alone and if I had to stay at 15mg, I would not be safe. I have PTSD and I would have to be heavily sedated to stay at a dose more than around 7.5 mg. That would leave me in a place that is a lot worse than no pred, at all. I really do not tolerate prednisolone well. You are right though, I think that for my PMR, I do need slightly more than I am on.

[Zebedee44]

Reading through your BIO can I suggest that the inflammation had been building up in your body over an exceedingly long time and you had managed to live with it and carry on your energetic lifestyle regardless. That seems to be a common factor for many people diagnosed with PMR, and none of us realise when we finally get so bad that we can barely function that the treatment might have to go on for a very long time and we might never feel as good as we did before.

PMR seems to be a very difficult condition to diagnose, especially as we all seem to experience it differently. It can’t help you at all that you are being given such different opinions by your GP and Rheumatologist. You have every right to be frustrated by their mixed opinions and more so that your quality of life has been so compromised.

At 5mg after such a short time you are bound to feel absolutely dreadful. After six years of a slow managed taper and four of them stuck at 8mg in order to continue my active life with my pony, I felt so terrible at 5mg that I went back to 6mg, but I still feel generally unwell, feverish, nauseous, mentally and physically fatigued. And so much pain in the parts of my body that have deteriorated with osteoarthritis over the period where prednisolone masked the pain.

This year the hospital rheumatologist questioned whether my diagnosis of PMR back in 2017 was correct. I considered him a complete idiot and saw one of the highly respected Rheumatologists known to this forum. The long and short of it is that for me the steroid gives me a life. I have made huge adjustments to my diet, take bucket loads of vitamins, minerals etc, but it’s the steroids that give me QOL (and luckily my GP is on the same page).

I do hope things begin to improve for you and that your wonderful trip will be all that you expect. Best wishes, Chrissie

[Gimme in reply to Zebedee44]

Thankyou for your thoughtful reply and for sharing your experience, Chrissie. You make some really good points there and you are right about one thing. I have felt so unwell for so many years that I have no idea what feeling well feels like now.

I laughed at the complete idiot, I admire your spirit, but I have to admit that I find myself thinking that of some healthcare professionals a lot lately. One thing that I have learnt with this journey is that you have to look after your own health and take what you are told with a pinch of salt. Thank goodness that nowadays there are the means available to check everything. I think I have to be more assertive with these people and keep on at them until I get answers. I do have a tendency to let things slide when I feel under the weather and you can't afford to do that with this illness.

I do think I have PMR from what I have read on this forum, so many people here sound just like me. It's the uncertainty when I speak to HCPs and I get the wishy washy, it does sound like PMR or it might be PMR. If they don't think it is PMR, why stick me on the steroids in the first place? Maybe that is just how medical people speak.

[PMRpro Ambassador in reply to Gimme]

"Maybe that is just how medical people speak"

Too many have lost clinical skills - if they don't have a lab or imaging test that tells them exactly what it is, they don't have the knowledge or confidence to make a decision off their own bat.

[Gimme in reply to PMRpro]

What you describe is certainly the case when I take the cats to the vet too. It does seem to be a trend. Mind you, I think the availability of imaging of various sorts has to be a good thing. I am pleased that I will get this neck scan. When I was looking at thyroiditis yesterday, there seems to be quite a lot of overlap in symptoms with PMR. I do think that I have PMR, but if I also have thyroiditis that could making things worse and complicating matters. And if I don't, then that is one more thing crossed off the list.

[PMRpro Ambassador in reply to Gimme]

Thyroid problems are supposed to be part of the differential diagnosis of PMR>

[Gimme in reply to PMRpro]

I'm not sure what you mean by differential diagnosis. What does it differentiate from?

[PMRpro Ambassador in reply to Gimme]

"A differential diagnosis is a list of possible conditions that share the same symptoms that you described to your healthcare provider. This list is not your final diagnosis, but a theory as to what is potentially causing your symptoms."

PMR is not the disease, it is the name given to a set of symptoms which can have several underlying causes - including thyroid problems, cancers, inflammatory arthritis and other things. PMR should only be the option after the others have been ruled out - most of them have quite distinct lab/imaging results.

[Gimme in reply to PMRpro]

Sorry if I am being slow, but are you saying that thyroid problems could be part of the PMR, or that they are potentially confusable with PMR? Or that thyroid is one of the other illnesses that need to be ruled out?

[PMRpro Ambassador in reply to Gimme]

They are potentially to be confused with the PMR we have as they can be the source of similar symptoms and so needs to be ruled out.

[Gimme in reply to PMRpro]

Thank you for clarification. It's certainly interesting. As I mentioned elsewhere, I have been having more or less annual thyroid tests for years because of tiredness, but the blood results always come back normal. And for a couple of years, I have wondered if I am getting a bit of a goitre or if it is just my overall chubbiness giving me a double chin. Plus, on and off, I find swallowing quite uncomfortable. I can't say that I am looking forward to the possibility of dealing with getting the medication right for that one, but I'll deal with that if and when it happens. Just pleased that nice lady GP is checking things out.

[Seekingasolution]

I have a lot of empathy with many of the things you have written here. I think you were about 55 yrs then when this started ( like me. ) I was also fairly fit, climbing mountains and juggling responsibilities at work and home. Felt about 35. Then suddenly I couldn’t get up from the table at a meeting, or from my seat on the train. Felt fluey , very dejected and dog tired. A 40 minute stroll with the dog required an hours nap afterwards. Couldn’t get any diagnosis originally. Wondered if I was going a bit mad. Kept wondering’ what is wrong with me ?’ Wondered if the menopause could cause these symptoms? Did I need to see a neurologist?? And all the time, my blood work was pretty much ok. ‘ fantastic liver function, kidneys great ‘ .. slightly elevated CRP.. Do you have a slight cold ??’ This was 12 years + ago. There were times when I wondered as did my GP if there was something else going on - thyroid and parathyroid tested - nil. Anyway … I am now at 1 mg a day and well I do feel better than when I was at 7 mg - because I think the inflammation has receded and it has taken me several years to get here. As you say, as yet there is no test where a doctor can say definitively that you have PMR. I think there are a few different sorts of AI disease where this is also the case and where the drs rule is if in doubt prescribe prednisolone and see if it helps which is frustrating. The reduction regime you were put on does sound fast , as others have said. Couldn’t that be the likely reason why you feel so crap ?

I used to compare myself to my 95 year old mother who had more energy than I had at the time. Like you I would think to myself this can’t just be age. I feel somewhat robbed but on the other hand, there are worse things to be afflicted with.

You say this is the first time you haven’t been able to beat something, but I think you just probably need to give yourself more time it’s not something you can beat into submission . It has its own agenda . I think what has helped me is doing everything I can to help myself such as not pushing myself to walk more miles , napping when I needed to, more veg, more water, less salt, no red meat, less wine in the evening, the occasional antihistamine which gives me a blissful nights sleep. Accepting that it’s small steps and sometimes it’s backwards.

I don’t know anything much about PTSD but that sounds a bit scary . You don’t say if you are receiving any help with this. I was talking to someone yesterday who said there were new initiatives with the NHS to help with PTSD. Especially if you are connected in any way ( veteran, family member ) to the Armed Forces. Op Courage is it’s name in case it’s useful.

Good luck with it all Gimme !

[Gimme in reply to Seekingasolution]

Thank you and thank you for sharing your experience.

Retrospectively, I think I was about 43 when this started. I am 65 now. But when I discussed my medical history with the nice lady GP, she says that there are indications that the inflammation had been there even in my 20s. 43 is significant because that is when I finally got my divorce out of a coercive marriage with someone who just would not let go. The PMR like symptoms started soon after.

I have cPTSD from childhood trauma. I am extremely hypervigilant, have a heightened startle reflex, flashbacks and nightmares. The prednisolone makes that so much worse and at 15mg, I was permanently in a state of being triggered. I did have help with the PTSD and I manage it pretty well now, but the pred took things to a level that I am unable to handle. I can't help thinking that all that stress and anxiety is the root cause of the PMR, especially as too many years of work stress finally caught up with in 2021 and I became too ill to carry on working.

The reduction regime wasn't planned, more of an emergency. Without being too explicit, I live alone and I was not safe to be alone without someone to keep an eye on me. I really hope I never get GCA. But I think you are most probably right, I wasn't able to stay on enough pred for long enough to get things fully under control. On balance, I feel worse than I did this time last year, when I hadn't even heard of PMR and had no medication.

[Seekingasolution in reply to Gimme]

Mine too came on with the stress of divorce and I overdid it climbing up Ben Nevis. At the bottom I was thinking what next after this? Mont Blanc? By the time I got back down again, I thought never, ever, ever again ! 😄

As I became more aware of all my symptoms I found some distraction useful. I used to watch comedy at 4 am when I couldn’t sleep hoping it might raise a titter. I moved on to operatic singing. Arrrrvay Mareeeeee-eeearr!! Gawd knows how the neighbours slept ! These days I have found some creative groups locally usually full of women of a similar age having a go at things. I am hoping that laughter and social connections might also be a small form of therapy for me.

Like you I am fearful of GCA but there are others on here who are coping with it. Again lots of support and information. Let’s not worry about that until it happens - if it ever does x

[PMRpro Ambassador in reply to Seekingasolution]

Many people underestimate the Scottish mountains! Was watching a programme last night about a lady with MS who decided to walk Ben Lawers alone in a black hole for phone signal. She slipped and broke her ankle. It needed a random walker who found her and a helicopter and mountain rescue to get her safely down.

[Seekingasolution in reply to PMRpro]

Yes you’re right. I passed children doing it in flip flops !! But I’d done Helvellyn as a warm up so thought I was ready enough. When I checked in at the base they said who’s climbing today ? What, you ?? I was thoroughly insulted !! However I realised later that I had been able to walk most of Helvellyn like Spotty Dog… left right, left right and a bit of hairy scary climbing. Ben Nevis is like steps for much of the way. That lifting mechanism seemed to get me later on the way down.

[PMRpro Ambassador in reply to Seekingasolution]

It does. Personally I think anyone heading up in totally unsuitable gear should be stopped and fined if they continue and get into trouble. It's the same here but at a higher elevation! Two Brits had to be rescued at night with helicopters during the summer, risking the crew's lives as well as their own. A climbing instructor/mountain guide had met them on their way out. far too late for a safe start and in ridiculous gear, and warned them about their equipment and the forecast - they dismissed his fears quite rudely. If a local tells you it is too risky here, you listen because they won't stop anyone usually.

[Zebedee44]

All these life challenges that you have been through have probably brought on the symptoms of PMR and possibly other things. It seems a common thread amongst us.

In my twenties I saw an eminent homeopathic doctor who diagnosed adrenal exhaustion, then I went on to have a demanding job in catering, was victim of wrongful dismissal, later also medical negligence, fought them both at court, diagnosed with PTSD , treated with EMDR, on the back end of which the PMR symptoms began. Months later the steroids released me from the life in a wheel chair I feared, and I began a different life.

Like you I feel that I won’t be beaten by this invisible illness but I resent the fact that I can’t plan anything because I don’t know whether I will cope physically or emotionally with the challenges of each day. I just go with what my body tells me. I also live alone so I do what I can. As long as I can spend some hours a day with my pony I have a life I enjoy, and I take the meds to make that possible.

I hope you find your way through this maze. Try not to add stress to your life, it feeds the inflammation. A mindful moment caressing your cats might bring you some peace. Take care , Chrissie

[Gimme in reply to Zebedee44]

Thankyou. 💗

[Broseley]

I wonder how many of us can relate to this? I too went through a very stressful time at work in 2011/12, at the same time my elderly parents 200 miles away were struggling - dad with dementia and mum with a nervous breakdown. I ended up resigning from my job of 30 years - the best thing I ever did - sorting my parents out who both eventually died, then getting another job I loved and much less stressful. Then discovering my blood family (who found me - I'm adopted). It was then that all the problems with inflammation started; first my elbows, then shoulder, knees, ankles and hip. All diagnosed as inflammation but occurring one after the other and not bilaterally.

Then a stressful house move, to a new area, both physically and mentally exhausting, during the heatwave of 2018. The 'tendonitis' in various joints continued until it became ubiquitous by 2021 and was diagnosed as PMR, but too late, so I also have GCA. The stress has also continued with having to take a roofer to court during covid, winning, but never seeing a penny of the £12000 he was told to pay us.

I know most people have stressful lives, but surely it must play a part in PMR. Maybe it's our make-up - we all seem to be dogged, determined souls who maybe grit our teeth and fight on despite the trauma which is actually deeply affecting us under the surface.

[PMRpro Ambassador in reply to Broseley]

Here they fully acknowledge the role of stress - taken as a given.

[Gimme in reply to Broseley]

That's a lot to be going on with, Brosely. I hope that things are starting to settle down for you now. I have suspected that being dogged determined souls may be part of our problem. We might have kept on with a stressful lifestyle long after a lot of other people would have given up. I have also noticed how many of us are articulate, curious, smart and one one way or another, achievers. Being that kind of person can be stressful in itself without added life traumas.

[Broseley in reply to Gimme]

Thanks, yes I have long known I an a Type A person. But when I was younger I thrived on stress - actually enjoyed a challenge. Now I find that I really can't cope with any stress. Things are quietening down now, though I've had to mentally put the money owed by the roofer 'to bed' after 18 months of pursuing him, and just accept that we'll never get it. You reach a time in life when you have to put your health first, both physical and mental.

[Gustie88]

The use of prednisone has shut down your adrenals which also make many other important hormones. Maybe try adding small amounts of pregnenolone and DHEA. Hope you feel better soon.

[PMRpro Ambassador in reply to Gustie88]

The steroids do not usually shut down the adrenals entirely. They make the pituitary signal there is enough corticosteroid present so no more is needed from the adrenals. Bit like the central heating boiler and a wood burning stove that stops the boiler producing heat for the radiator but doesn't stop the production of hot water for the shower. But other things are still produced.

[Gustie88 in reply to PMRpro]

The exogenous cortisol (prednisone in this case) turns down, or often off, the ACTH signal to the pituitary to make adrenal hormones. 5 mg of pred taken over a fairly long period is enough to totally shut down the adrenals in most cases.

[PMRpro Ambassador in reply to Gustie88]

It is a moot question in any case. We all need pred, there isn't an alternative for most of us.

It requires high doses of pred to stop mineralocorticoid suppression and that may apply to patients with GCA at the outset who are often on the 50mg that has that effect. However, they rarely stay at that high a dose for long and the alternative would be total and irreversible loss of vision. The patients on PMR doses very rarely suffer more than suppression of cortisol - which is replaced by the pred and almost always returns with a sufficiently slow and careful taper of the dose. ACTH's primary function is to trigger the production of cortisol although it does play some role in the production of sex hormones and production of some other chemical substances. However, other than some effects on hair growth in females and some fluid retention, most of us have few problems while protecting our sight.

[Gustie88 in reply to PMRpro]

It's not really moot since the poster is looking for help/possible causes of not feeling well. Certainly the cortisol/prednisone is needed, but it has no doubt shut down normal adrenal function. By taking small doses of the other adrenal hormones as replacement for these lacking hormones, the patient may feel much improved. It's definitely worth a shot. Some endocrinologists speculate that doses as low as 5 mg of prednisone take for longer than a few weeks is enough to completely suppress normal adrenal response to ACTH, especially when previous high doses of prednisone were used. The adrenals can begin to atrophy after a few weeks of no ACTH and may never return to normal function.

[PMRpro Ambassador in reply to Gustie88]

It is moot in terms of whether we take pred or not.

There has been discussion of taking DHEA before - it didn't meet with much enthusiasm.

[Gustie88 in reply to PMRpro]

There was no suggestion of stopping the prednisone. Just adding the likely low or non-existent adrenal hormones in an attempt to gain symptom improvement.

[Gimme in reply to Gustie88]

Thank you for your kind thoughts, Gustie. I am sure that the adrenals being on vacation have a part to play, but I also still have active autoimmune disease and that makes most of us feel pretty rotten, without the side effects of the meds. There remains a question mark over my autoimmune status/diagnosis and another question mark around my endocrine system. I would be wary of taking any pharmacologically active substances without a medical prescription, at this stage, especially not to confound any ongoing investigations. But also, because I have imminent foreign travel and I really wouldn't want to risk upsetting the apple cart right before I go away.

[Gustie88 in reply to Gimme]

I totally understand and wouldn't start any new meds or supplements before a vacation either. Maybe get your adrenals tested at some point when you get back. Also recommend testing Free T3 for thyroid function. Taking exogenous cortisol/prednisone can hinder the T4 to T3 conversion and leave you feeling hypothyroid. Good luck!

[Gimme]

Thankyou for all your comments and your support. I do appreciate you sharing your stories and observations. I feel less alone with my journey because of it.