Struggling with PMR and Pred

[Gimme]

Hello, am newish in the group. Just updated my bio with my story and how I ended up where I am.

I have had PMR like symptoms since around 2003, that seem to flare for a few months and then goes back to being just about liveable with for a while when self medicating with ibuprofen, before flaring again. The symptoms were undiagnosed and untreated by a doctor. I had a tentative diagnosis of PMR in Nov 22, then had a massive flare in Jan 23 after having flu, which ended up with me starting prednisolone. Since then, I have had fantastic support from the GPs surgery.

Though one GP said recently that it categorically could not have been PMR in my 40s. I disagree. It is my body and I know how I feel. If I have PMR now, then I had it then, same symptoms throughout. And my symptoms classically fit the pattern, with the exception of the age of onset and duration. My biggest beef is that if doctor's automatically rule out anyone under 50, then it is never going to become recognised in younger sufferers and they will continue to suffer undiagnosed and unsupported, like I was.

I have done a lot of reading up of the medical literature since then and it started to dawn on me how so many of the random symptoms that I have been experiencing might be connected.

Realise that this might be considered slightly heretical to say in this group , but I absolutely hate the prednisolone and I hate the way it makes me feel. I can't say that my quality of life is hugely better on it, I've just swapped one set of problems for another. I have tapered rather more suddenly than is classically recommended, due to the psych effects. Feb 23 15mg for 2 weeks, then 10 mg for a week, then 7.5 mg until May 23, then down to 5 mg. That is as much as I can tolerate for now. I didn't notice much of a difference in pain and stiffness until I dropped to 5mg, but I am still on 80-90% effectiveness of the initial dose. The fatigue is killing me, but I am guessing might be due to the adrenals being on strike now.

Following my researches, I am confident that the PMR diagnosis is correct, but I have suspected from the start that it is not the whole picture. I have had dietary problems in the past, so I am wondering if this has either worsened or is exacerbating the PMR. I have followed a gluten free diet for about 15 years and most of the time, pretty well an anti inflammatory low carb diet. I am extremely reactive if I lapse on the sugar and carbs. Apart from the diet, most of the other illnesses that might be confused with PMR have been eliminated. I intend to look into the diet further. I was certainly short on Vit D, and plan to try iron as so many PMR sufferers are anaemic, and possibly short on B vits, since I do not eat grains. The fatigue could in part be due to a deficiency.

For the moment, my biggest concerns are firstly managing the fatigue and the knock on effect that has on my quality of life. And secondly, the effects on my mental health of trying to adjust to a life changing chronic illness. I am totally isolated, have no support and no energy to try and develop one by going out and making new friends. I don't have family and live alone. I feel totally isolated and the lack of energy to do anything nice leaves me in tears a lot of the time. I love the outdoors, wildlife and nature, but at the moment those are things of the past, since I can barely make it out into the garden most days.

[PMRpro Ambassador]

I agree with your comment about the age claim - but luckily the premier PMR rheumy in the UK disagrees and says she has quite a few patients in their 40s. She also disagrees with the 2 year duration rubbish!

Don't kid yourself though - most of us dislike being on pred and many have arrived here insisting they will never take that "poison". However, since unmanaged PMR is felt to be 7x (or so) more likely to progress to GCA with the attendant potential irreversible total loss of vision, there is a strong argument for it as the only option that is guaranteed to work quickly.

I am unusual - I had no qualms about my pred, it gave me my life back and I have never regretted taking my pred. I've been lucky - very few adverse effects at all. I had 5 years undiagnosed as an "atypical" presentation - my markers never rose out of normal range but otherwise I was textbook. I was depressed then - heaven knows what it would have been like after another 14 years.

[Gimme in reply to PMRpro]

Thanks for the reply.

Do you remember where you saw that about being 7x more likely to get GCA? The gap in my knowledge atm is what happens if you decide not to take pred, since I certainly felt better on the ibuprofen than I do on the pred. I would like to find out more about what happens if PMR is untreated, if only to convince myself that I made the right decision in starting it.

The info is contradictory. Some of it says that PMR is self limiting and will get better on its own. Other stuff says that it will get worse if untreated. Crikey, you can't get much worse than being undiagnosed and untreated for about 20 years. Even the rheumatologist raised an eyebrow.

The GCA has worried me since I first heard about PMR. I saw a wonderful ophthalmologist a few weeks ago and she did the full check. My eyes are healthy for now, except that I have the dry eye thing from the Meibomian (sp?) glands. She also gave me good advice on how to spot the early signs of GCA, some of it not mentioned in what I have read, so even though I am no doubt about the seriousness if I do get it, feel a lot less anxious about it now.

I can't say that I got my life back when I started on pred. I thought I had in the first week, I was in a state of euphoria, I thought I was me again. Then the mania hit. I wasn't just a bit anxious, I was virtually hanging on the ceiling. I would have very quickly been certifiable if I had persisted that that dose. Even my doctor was a bit alarmed. He kept calling me every few days to see if I was OK.

[Gimme in reply to Gimme]

oh, actually, the rheumatologist did more than raise an eyebrow. He started telling me off, and I did I realise that I could have lost my eyesight. To which I replied, that there was no point being annoyed with me, I hadn't even heard of PMR and GCA until last November. And that he should try being a perimenopausal woman presenting with aches and pains, fatigue and brain fog, and see how that conversation goes. I respectfully suggested that he might inform his colleagues in General Practice. Though being fair, the rheumatologist is very nice and I think he was enraged more on my behalf.

[PMRpro Ambassador in reply to Gimme]

I think it was quoted by Prof Christian Dejaco, my own rheumy and probably the leading authority in the field in the world according to Sarah Mackie. The 7x is a figure that has been bandied about for some years but he mentions the higher risk in the Introduction here

academic.oup.com/rheumatolo...

without a figure. It may be mentioned in Ref 2 from 2011 but it isn't available free-to-air to read.

Your GP COULD have used medication for the mania. It happens bit not commonly.

[Gimme in reply to PMRpro]

Thankyou, it should be easier to find out about that now with what you have given me. Interesting that I wasn't offered anything to calm me down, but I'm glad in a way that he didn't. I've battled with anxiety and depression all my life and pred was likely never going to be great for me, as I also have PTSD. I am especially sensitive to anything that has a stimulating effect and I even have to be a little bit careful with my caffeine intake. With time, I have become fairly averse to anything that might tinker with my already dodgy marbles.

[singingloud in reply to Gimme]

It appears that your biggest concern is your mental state. Before being diagnosed did your doctors treat you for your depression and anxiety?

I know that prednisone certainly has made me nervous in situations that I didn’t have before. Over the years I had untreated depression especially after four miscarriages.

I’m the past few years I’ve taken an anxiety medication during stressful times. They were a blessing to have when needed. I hope you find a way to use the prednisone at the right dose to keep off the PMR symptoms and still balance your mental health.

You are not alone.

[Gimme in reply to singingloud]

Thank you. I hope so too.

[Merryfield in reply to Gimme]

I endorse antidepressants. Been on them since ‘91. And now on them as well as methylprednisolone. I hate the side effects of steroids, esp the bruising. But they work.

[Gossiplady in reply to Gimme]

hi Gimme! My sincere thoughts and sympathies are with you. My doctor, ar the onset of this awful disease said “you are in for a rough ride”. True. But remember you have many many friends on this forum who totally understand how you feel, mania and all. Rant to us whenever you feel like it. I too live alone but am managing. Just to look at the garden outside and appreciate sparrows hunting about cheers me. Keep strong and smile. We will win.

[Gimme in reply to Gossiplady]

Hi gossiplady (lol I love your nick), Thank you so much for your kind message. I appreciated that. You've made my eyes leak a little bit. Thank you. 💗

[Gossiplady in reply to Gimme]

a pleasure! That is what friends are for. I keep a diary, not for anyone else, , I put in how I feel at any time, where the pain or stiffness is, which pills I have taken etc. When I look back over the last two years and a bit, yes it has been a rough ride, but boy, have I improved! I remember at one point, lying in bed , I could not allow one leg to touch the other as the pain was so bad. Weird! Another weird event on high dosages, my forehead would sweat so badly it would run into my eyes and not only could I not see but the stinging pain was dreadful. Now all gone! Keep smiling, life is beautiful!

[Golden20 in reply to Gimme]

I’m so sorry for your struggle. Unfortunately, it would seem that unless you have an enlightened GP or Rheumatologist, who thinks out of the box, many are ignorant about this condition. According to my Rheumatologist, PMR only lasts for 18 months. I was diagnosed almost 5 years ago now. Please don’t be despondent, you know your body, better than anyone else. As for your personal experience with prednisone, it has been a Godsend for me. We are all different in our experience of steroids. Speaking personally PMR, has been a journey of many ups and downs, over the years. However, I really do think, with the right support and mindset from ourselves , GP’s and Rheumatologists, you can beat this disease. Keep listening to your body and don’t be fobbed off. Thinking of you. Good luck.

[Lizzab in reply to PMRpro]

Can I ask what your symptoms are now?

[PMRpro Ambassador in reply to Lizzab]

Symptoms of what?

[Lizzab in reply to PMRpro]

The PMR

[Gimme in reply to Lizzab]

Lizzab, are you asking me, or PMRpro?

[Lizzab in reply to Gimme]

PMRpro. Sorry for the confusion!

[PMRpro Ambassador in reply to Lizzab]

Not a lot - I'm on Actemra and 5mg pred. The problems I have now are due to myofascial pain syndrome which CAN be part of PMR but I had them before PMR, PMR just made them worse. I had a massive flare over a year ago - bits of the MPS are still bothering me but together with lower spine and SI joint problems.

[Lizzab in reply to PMRpro]

So nothing on your top half (shoulders and arms)? Full use of your arms?

I appreciate your time

[PMRpro Ambassador in reply to Lizzab]

Not now no - but 14+ years ago when my PMR was rampant and undiagnosed and unmanaged I had to prop my arm against the wall to blowdry my hair and getting something out of a kitchen shelf was next to impossible because of shoulder stiffness.

[Merryfield in reply to PMRpro]

Pro, you are one tough cookie!

[CaraDee]

Is it worth being a bit cautious about ibuprofen?

I was taking it all day every day for weeks (maybe months?) before being diagnosed with PMR, and when I did a FIT test I was told I needed a gastroscopy and colonoscopy, which showed gastric ulcers, which I suspect may have been caused by the ibuprofen.

[Gimme in reply to CaraDee]

It most certainly is worth being cautious. And certainly in the elderly, where there may be age related damage to kidneys already, and NSAIDs are not brilliant for your kidneys either. I would say to anyone planning on taking any NSAID long term for whatever reason, that it would be best to discuss with your doctor about alternatives, or whether you need to be taking a proton pump inhibitor like omeprazole, to protect the GI tract.

[darkred in reply to CaraDee]

Yes, Cara Dee, in my opinion, ibuprofen and other NSAIDs do deserve caution. Though I have taken Aleve for osteoarthritis pain occasionally in the past, I soon discover that I've traded joint pain for stomach pain. When I have taken it, I take only a half pill at a time. Although Aleve works great as a pain reliever for me, my stomach may be more sensitive than most! Now, with taking prednisone (now at 10 mg), I think of it as a "miracle drug," and am so grateful to have the pain gone, along with the bad mood associated with not being able to do the activities I usually do. That being said, I've not yet gotten to the stage of reducing from 10 mg. My "miracle drug" will probably be reduced this month.

[BarbB in reply to CaraDee]

I took ibuprofen multiple times a day for weeks for elbow tendonitis and next time I had a physical I was told I was in stage lll kidney disease. I stopped it immediately while being worked up for other causes of KD and kidney function went back to near normal within a few weeks. I only ever take it once a day if needed for the occasional headache now, never for chronic pain.

[Gimme in reply to BarbB]

I've never taken ibuprofen as a painkiller and it doesn't make a very good one, in my personal view. But it has worked really well for me as an anti inflammatory. I very rarely needed it more than once a day and often didn't use it every day, but it worked wonders on my PMR stiffness before I was on the pred.

[PMRpro Ambassador in reply to Gimme]

"it doesn't make a very good one, in my personal view"

It may not work well for you but it does depend on it being used corrrectly. In drug development it was designed to be used as a flooding dose using 800mg for the first dose to occupy all the receptors and then the following doses were lower to keep the level topped up. and maintain the pain relief. Ibuprofen used like that works very well for me and the effect usually lasts the best part of 24 hours. As the OTC recommendation it is far less effective and the company were furious when they were forced to market it as such a low dose.

[DorsetLady PMRGCAuk volunteer]

Thanks for updating bio...

Have replied previously, so won't repeat - but as for the possibility of untreated PMR developing into GCA - it is stated in many guidelines, studies etc

This link from Vasculitis Foundation states under complications -

Left untreated, PMR can interfere with mobility, making it difficult to perform daily activities such as dressing, bathing, combing hair, standing up from a couch and getting in and out of a car. Raising the arms over the head can be especially difficult. Very rarely, PMR can cause inflammation of the aorta, the artery which carries blood from the heart to the rest of the body. This can lead to a potentially life-threatening aortic aneurysm.

Serious complications of PMR can also occur when patients develop GCA, which causes narrowing of the arteries in the head and the temples, resulting in persistent headaches, scalp tenderness and vision changes. Without treatment, GCA can result in stroke or blindness.

Full article here -

vasculitisfoundation.org/ed...

[Mayadill in reply to DorsetLady]

Before I launch, sure this isn't true of everyone but 'can interfere with and make difficult' doesn't really cover effective paralysis, total inability to raise bottom from seat, such that paramedics had to wheel me away on a stretcher. That is indeed what one might call a serious complication of pure PMR.

[DorsetLady PMRGCAuk volunteer in reply to Mayadill]

Don't shoot the messenger.. not me that said it!

[Mayadill in reply to DorsetLady]

Oh DL, of course I'm not! i just thought - FFS, they're making it sound like a mild touch of arthritis. I am fortunate, a great deal more fortunate than many, in being basically well and happy. That is solely due to Pred and I don't lose sight of the fact that I have a disease that can eat me up if left to its own devices.

[DorsetLady PMRGCAuk volunteer in reply to Mayadill]

No I know you weren’t -and agree very often they do make it sound easy peasy -but then they have had it/got it have they?

[Gimme in reply to Mayadill]

Yes, I have had trouble with the bottom launching too. Sorry that you had such a horrible experience. 💗

[Mayadill in reply to Gimme]

Sometimes as i wander this forum I get the feeling there are as many levels of PMR and reactions to Pred as there are people. Mine came on hard and fast and vicious in just about a month, not so much 0-60 as 60-0. I also had excruciating pain in legs and shoulders. Again reading this forum I suspect that was useful! i mean I was obviously terribly ill and investigated inside out which as so many of us know is not necessarily the case when a woman of 60+ says she has aches and pains.

BTW love your explanation for your moniker.

[Gimme in reply to Mayadill]

oh absolutely, about our experiences being different. I can see from the posts that I was in a lot less pain than most people in the group. Except for the last two flares, I have been able to control most of the pain with ibuprofen and to some extent the stiffness. And I have never suffered the issues with raising my arms that so many have. If I had trouble getting out of bed, it was more to do with feeling so exhausted that I couldn't be arsed, rather than pain preventing it. My main issues have been to do with fatigue and how quickly my muscles become too tired if I try to do any repetitive activity, including walking. In fact, walking is the thing I find most difficult, and reaching my feet to put on socks and shoes. I can swim, both crawl and breast stroke, and the one time when I feel really well is when I am in the water, especially if the water is cold. Though the neck thing that kicked off in January was awful and I may not have started pred if that hadn't happened.

lol I was beginning to think that it was going to be harder to find a name to join the site than it was going to be to find a cure for PMR. 🤣

[Mayadill in reply to Gimme]

f I had trouble getting out of bed, it was more to do with feeling so exhausted that I couldn't be arsed, rather than pain preventing it.

Oh. No. There wasn't any pain in my hips. Pain would have been a sign of life down there. No life. Paralysis. Inertia, dead from waist to thigh. Brain says cheerily, "We're going to stand up now." No response from below. Doesn't understand the words, completely switched off, no longer connected to a power supply. The pain was in my lower legs and shoulders.

[Gimme in reply to Mayadill]

That sounds horrible and very frightening.

[Mayadill in reply to Gimme]

Well, it was of course but i didn't feel it. Part of the bizarreness. I think the brain must go into survival mode and I was calm and coherent with the paramedics, with the A+E guys. That was mid-afternoonish. I didn't even cry until much later, late evening, when I was in the A+E ward waiting to be found a bed and that was from the pain. And then in the morning I saw the Consultant and told him I was worried something had gone wrong with my spinal fusion and obviously he took that seriously and having said it somehow solved something.

The precise memo I'd send to the Vascular Foundation for the piece of - well never mind quoted aa few posts above is unprintable. A more acceptable version would be along the lines of pernicious drivel wholly erroneously conveying the impression PMR is a benign disease and thus assisting not in diagnosis but in misdiagnosis.

[Merryfield in reply to Gimme]

If you get a chance, look on youtube for the episodes of Grace and Frankie about “launching” off the toilet. Hysterical!

[Thiago1396 in reply to Mayadill]

I can certainly relate to that!

[Gimme in reply to DorsetLady]

Thank you for taking the time to reply, DL. 💗

That last paragraph is what I mean about the advice seeming ambiguous though and why I have been puzzling about it. It doesn't actually say that PMR causes GCA, I had understood them to be two different illnesses. On the other hand, I had understood that they are both due to an underlying vasculitis. The bit about the heart being affected is also worrying though, although I was aware of that as it refers in the literature to people with PMR being more likely to develop cardiovascular disease. Thank you for the link. I had seen that before, but I'll have a re-read of the whole article.

[PMRpro Ambassador in reply to Gimme]

They are considered by the top experts to be part of a spectrum of disease and I have given the link above.

[Gimme in reply to PMRpro]

Thanks both, I am due a call from the rheumatologist some time over the next 2 or 3 weeks and I will raise this with him. He needs to know that I still feel so ill most of the time and that I certainly don't consider that I have my life back, anywhere near. On balance, although the pain and stiffness is liveable with now, the so-called malaise is worse than ever.

[Mayadill in reply to PMRpro]

The trouble with that, as earmarked in my little rant above, is it seems to me there's an element of their being ranked, GCA the big dangerous one and PMR his harmless kid sister as per other spectrums, MGUS the non-cancerous sib of myeloma, morphoea as the sweet little baby sister of scleroderma (essentially a skin disease, no organ involvement).

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

You are right, it is confusing - yes they can be linked, many have both... but others only have one or the other... me - GCA only.

Was undiagnosed for 18 months - and although pains certainly did start in biceps [so some would say PMR] I never had, within those 18 months nor when reducing at low doses, any issues with hips/knees... so no PMR as we know it!

[Gimme in reply to DorsetLady]

Such a relief to be able to discuss with other people who understand about the condition and to be able to have a sensible conversation. Although my doctors have been brilliant, appointments are so short and often raise more questions than they answer. I don't know many other people who have even heard of PMR or GCA, let alone able to talk about it. Oh, and I got the "don't you look well" thing this morning from my hair dresser. grrr

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

All true (well maybe not always sensible conversations when off topic😂 -but we need a bit of light relief at times..)

Sure hairdresser meant well - just take a deep breath, give your brightest smile and let it go! Life’s too short …

[Gimme in reply to DorsetLady]

ha, yes, she is lovely, and I did learn something on here yesterday. I said, yes, it's the steroids! 🤣🤣🤣

[Barney2022]

I totally sympathise with your situation and am so sorry to hear that you feel so bad despite taking the pred 🙁 Reading your post reminded me so much of my own situation… initial symptoms (hip, thigh, groin and then knee pain and stiffness) started around Sept 21 and diagnosed with PMR about a year later. After giving it much thought (and still do to some extent…) I decided not to go with the steroids as I have other health conditions which would most likely be made worse with the side effects of the pred. I know most on this forum would say that the positives of going down the steroid route far outweigh the negatives but at the end of the day we have to make our own decisions and so far I have battled against (rightly or wrongly). I, too, am frightened about taking them - and also not taking them!!

My GP is supportive but leaves the decision to me altho, like you, I find there isn’t definitive proof for or against, as the symptoms and problems we all experience with PMR can be so varied and different. I completely understand when you say how much the steroids have affected your mental health - another thing that I fear if I start taking them. At the moment, I feel in control - in pain, but in control!! Like you, I also manage the pain with ibuprofen and paracetamol- again I know this isn’t good either. I have to manage my days differently now, and recognise when I need to rest. Other than that, I battle on, keep my sense of humour (that’s paramount for me) and take each day as it comes - when the bad ones come (as they do) just tell myself that tomorrow will be better…

Thank you so much for sharing your story. I mostly feel in the minority as most people get their diagnosis and immediately start on the pred (which I completely understand) but it’s so good to hear from someone who has also resisted in the past and continues to question that decision.

By the way, I also am in total agreement that diet makes a huge difference- if I overdo the wheat/sugary/high car foods I definitely feel worse for a few days. Unfortunately I find it quite difficult to be very strict - I’ve always been a “foody” and on the days when I’m feeling a bit sorry for myself I think sod it, I’ve had to give up and change so many things in my life, I’m not giving up the things I like to eat too… then pay the price 😂

Wishing you well, keep going, things will get better. You mention that you don’t have any family or other support - is there a PMR support group anywhere near to you perhaps? You said you enjoy outdoors and wildlife but haven’t got the energy to enjoy it at the moment. Try not to be hard on yourself, small targets and achievements can make you feel quite chuffed with yourself, however insignificant they may seem to others (or to what you would have managed pre-PMR).

All the best to you 😊

[Gimme in reply to Barney2022]

Hi barney, thank you for your message. No, I didn't want to start taking pred, and I was doing quite well with my self management, but when the neck thing kicked off it was so bad that I took one tablet to see if it helped and the change was so dramatic that I kind of got sucked in that way. It's still troubling me, but the pred makes it manageable, it's the only ouchie bit that the ibuprofen and paracetamol didn't touch. In all honesty, I think my neck is in part why I feel so rough all the time.

The problem now, is that I don't know if it is the illness or the pred that is making me feel unwell. I almost feel like coming off it completely, having a detox and starting again. lol before anyone tells me off, I'm not going to do that and if I were, I would speak to my doctor first.

Hopefully, you won't reach the stage where you feel that you have no choice, if you are managing OK now. Though if I had one important piece of advice, bone up on how to recognise if you are developing GCA and don't hang about, if you vaguely suspect it. Some areas have put a fast track protocol in place for GCA, so you can ring 111, explain that you have PMR and you have concerns about GCA and they should act on it. If not, you can go to A&E. If you do develop GCA, you will be put on a high dose of pred. The alternative is to risk losing your eyesight.

To try to put your mind at rest, I now don't believe that the weight increase is inevitable and it was the main reason I didn't want to go on the pred. I had just lost 2 stone on the diabetes prevention programme. Eating low GI, no sugar, and limited carbs has worked for me in keeping my weight stable. If I am hungry, I eat, but I choose low carb foods. Fat free Greek yoghourt has been a life saver for me and it is packed with calcium. Banana pancakes (no flour) are also a good one. For me, if my blood sugar spikes, that makes me hungry, and I found that I have been a lot less hungry by cutting out added sucrose. The hunger that I felt when I first started taking pred was like nothing else. I could eat a meal and my tummie was rumbling again an hour later. I cut out the sugar and managed to push through the hunger, though that might also coincide with my cutting down from 15 to 10 mg. I'm not sure. I'm certain that sugar makes it worse though.

[LMali]

Hi Gimme, when I read your story, makes me feel "lucky" in that my PMR (which was excruciating pain in shoulders and arms) was quickly diagnosed in lockdown. Dr prescribed pred and whilst I was aware there were side effects, I was desperate to be pain free. I had been taking codeine but it did not remove the pain. Within 48 hours of starting pred (15mg) I was pain free. I have had a few of the longer term side effects (my skin seems more likely to damage, my hair is thinner) but nothing drastic. Having said that, 3 years on I am finding it hard to reduce below 5 mg because I am very pain averse! It is a personal choice but I would not be prepared to endure the pain required to "ride the storm" of PMR which could go on for years. I am concerned also about your isolation and lack of human contact. These things are so important. And maybe if you were more pain free and had a little more energy you could join a local friends group? I may have missed it but are you in the UK? Even just meeting with a group for a cuppa once or twice a week, not for a moan but to chat about gardening or craft or politics or whatever interests you, would help enormously I think.

[Gimme in reply to LMali]

Thank you, LMali, Yes, I am in the UK. I do have a local craft club that I can go to once a week. I have missed quite a few weeks on and off, when I needed a lie down a lot more than I needed to go out. It sounds so ridiculous when I type that. I never thought that I would come to this. Not so young anyway.

[LMali in reply to Gimme]

Only you can judge what you need to do at any given moment, ridiculous or not. I am torn between my "never give up" mentality and "listen to your body" mentality. I find they both help at different times! Lots of villages etc these days have community cafes etc just for people to gather in. Maybe there is something like that near you?

[Bramble2000]

I have had PMR for about 3 years starting when I was 48. I refuse to take the steroids because of the way they made me feel and I can’t take Methotrexate either, Rheumatologist said if I wanted to get better, I’d take the meds. Well actually, no.

[Gimme in reply to Bramble2000]

And how are you doing now, Bramble? What are you doing for self management? Did your medical team cut you loose when you decided to go med free? Sorry, so many questions, but really interested to know how it is going for you, if you are happy to share?

[Bramble2000 in reply to Gimme]

In my opinion, the steroids were as bad add the PMR, if not worse. I felt like I was losing my mind, extremely depressed, drenching sweats, indigestion, high blood sugars (I’m diabetic). Don’t get me wrong, my PMR is bad but it took the rheumatologist a few years to diagnose it because he said I categorically didn’t have it because I was too young - 48. I’m 52 now. In the time it took to get a diagnosis, I became housebound, almost bedbound and I lost a heck of alot of muscle mass. In the last six months I’ve managed to get a care package whereby carers come in each day to help me shower etc. I’m single and prior to this I was only managing to shower once a week. So, I’m no further forward but I haven’t developed any GCA symptoms, thank goodness. I also have Ankylosing Spondylitis which has complicated the picture somewhat. I eventually got diagnosed with PMR via a pet/Ct scan that lit up like a Christmas tree! I’m seeing my rheumatologist on Monday. I’m not looking forward to it but here in the UK, we have very little choice as to who we see.

[Gimme in reply to Bramble2000]

It does sound like you have been through the mill. Sorry that you had to wait so long for a diagnosis. Ridiculous that they are so rigid about the age of onset. It's self perpetuating, if they refuse to consider anyone under age 50. It sounds like I have been lucky in not becoming a heck of a lot worse whilst waiting to find a doctor listened. Mind you, I suppose that I would have eventually been kicking up a stink if I had got much worse. I certainly empathise with that about feeling like you were losing your mind. I felt the same on the higher dose.

[rescuedogs]

I am so sorry you are dealing with this. My husband is so tired all the time . If you find anything that helps please share . We are desperate 🦋🦋🦋🦋

[Gimme in reply to rescuedogs]

Thankyou. If I find a solution, I will be delighted to share, I will be shouting it from the roof tops.

[Merryfield]

Naps help me, daily list of gratitudes, texting, seeing friends. Dog videos? My dogs make me laugh. I don’t have other serious diseases except diabetes, kicked in by steroids. And do consider giving the antidepressants a try, with close monitoring. Sorry you are suffering so.

[Gimme in reply to Merryfield]

oh yes, lots of naps.

[Gimme]

Thank you for all your comments. Really appreciate your input.

Just to pick up on a couple of comments. I really don't believe that I am depressed. I am grieving and I can tell from the various posts that most of us have probably all been through that stage. It takes time and it takes as long as it takes. I won't be taking antidepressants. I've never taken an anti depressant that made me feel better than I felt without. And believe me, I have tried most of them. If I am down in the dumps at times, it is because I feel too tired and physically ill to engage with life to do anything nice. Being tired can make people feel pretty miserable.

Also I'm just disappointed that pred hasn't really given me my life back, as I had hope it might. Nowhere near. It's clear from the posts that a lot of the time I was not in anywhere the same level of pain as a lot of you seem to have been, so my perspective on the benefits of pred may differ. I would almost doubt the PMR diagnosis on that basis, but it is clear to me that I do have a lot of inflammation in my body, even though my inflammatory markers were not up. Though at least I can now get up and down stairs and out of a chair and I can bend down and pick stuff up, none of which I could do without making lots of groaning noises before.

The fatigue, and lack of enthusiasm or interest in anything, due to my low energy levels is what is giving me most grief atm. I can't even take a holiday, as I am simply not well enough. Starting the Vit D did help a bit, which makes me think that I need to look at the nutritional aspect again. My anti inflammatory diet has lapsed a bit the last few weeks and I am wondering if I might have other deficiencies, besides the Vit D. Writing all this down tells me that I need to speak to the GP again.

[Body_bonkers]

I could echo most of what you've written Gimme - you're certainly not alone. Started steroids a few months ago and despite significant reduction in pain and stiffness, it certainly has not given me my life back. I know this won't last - side effects will eventually taper with dose albeit my adrenals also have to kick start later on but worry about long term resilience when still battling the peri-menopause. My medical care has been poor and totally relate to feelings of isolation but the support on this forum really does make a difference - keep posting

[Gimme in reply to Body_bonkers]

Thankyou.

[1951grumpa]

One of our sons at 40 developed PMR like symptoms his GP was useless so he ended getting an appointment with my rheumatologist. Who at first didn’t make a diagnosis but started him on 15mg prednisone and said he’d feel better and we’ll get to the bottom of it. He returned in 2weeks and was told that his inflammation was due to the parvovirus. It took 6-8 months to feel better.

[Gimme in reply to 1951grumpa]

That sounds nasty, grumpa.

[BLUEPMR]

Oh Gimme your story went right to my heart. I am still trying to resist going down the Prednisolone route. I too find keeping of carbs essential the symptoms escalate when I lapse but I also have chronic systemic Candida problems and when I am rigid with my diet symptoms improve immensely. The exhaustion and weakness are very bad at the moment but pain comming under Control after nearly two weeks on the Histamine/Sebo diet very very strict and only meant for short term until symptoms improve then adding things in to find my right personal level. I'm hoping to get the level of inflammation under control with this diet so far less pain and less swelling of my legs but early days yet.

Just wondering if Candida could be a feature in your symptoms too.

Also I find Turmeric a good pain/inflammation reducer.

I feel for you I too feel like I'm sleeping my life away.

[Gimme in reply to BLUEPMR]

Sorry that the tiredness and weakness is causing you so much grief. I know how tough that is. Before I started pred, I was sleeping 14 hrs a day. Then I went to sleeping 4 hrs, but it has normalised to about 8 hrs now that I have dropped the dose. I still need to sleep a couple of hours in the afternoon, especially if I have been busy in the morning. Sleep is very restorative and if you need it, it is the best thing that you can do for yourself.

I'm not sure how I would tell that I have systemic candida, but I wouldn't want to restrict my diet even further. Being gluten free is enough of a challenge.

I've been making a ginger and turmeric infusion from the fresh roots. No idea if it is doing me any good, but it makes a nice drink.

[BLUEPMR in reply to Gimme]

Yes I love ginger haven't tried it with turmeric yet though