Before I was diagnosed with PMR I wondered if my symptoms could be due to menopause. As soon as I started taking HRT the fluey feelings went although most of the stiffness remained. Later I was given prednisolone which of course worked like magic. However after 18 months of tapering, I came off it altogether. Initially I was fine but it has started to come back and with that feeling of sandpapered feet ! It also became worse after my flu shot. I am trying not to go back on steroids as it gave me indigestion and there is a history of oesophageal cancer in my family. I’m trying a paleo/ anti inflammatory diet now to see if that helps at all and wondering if a low dose HRT is better than steroids.
Anyone else any thoughts on this and any flare ups from vaccines. I’m booked to have my Covid vaccine shortly and will go ahead with it with fingers crossed.
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There is a version of PMR which is due to hormonal imbalances - I have come across a few patients over the years with it rather than pred-responsive PMR.
Good luck with the diet but I have never come across anyone for who diet alone did the trick.
Sounds like you’ve had a combination of hormonal changes and unrelated inflammatory changes. I sat this because HRT got rid of the fluey feel but not the stiffness that the Pred did like magic. Because of that, I’d be a bit sceptical that HRT is the whole story. In theory anything that stimulates the immune system, like a vaccine could trigger PMR but this doesn’t happen to everyone but seemingly some. What triggers what is difficult because it may just have been the last straw for a body already in trouble from the sounds of it. There have been those who have come off Pred, only for PMR symptoms to return weeks or months later. It is difficult to know if their autoimmune activity was still bubbling away and it took a while to build up again or whether it was a fresh trigger.
When you took the steroids before, did you take any sort of stomach protection?
Much has been talked about diet here and I think if it was as good as a treatment we’d be hearing about it. There is no shortage of people wanting not to be on Pred. If I remember correctly, those recently going for diet and alternative measures only have still been dealing with pain.
Thank you. It just seemed to me that no one gets PMR before their 50’s so hormones might be implicated. Mine started in mid 50’s after walking up and down Ben Nevis. I was trying to use exercise to get over a stressful event ! If I hadn’t had walking poles I don’t think I would have made it down. I was prescribed 20 mg of Omeprezole and went to 40 mgs a day but still had indigestion. I think the soreness in my tummy is at the junction of oesophagus to tummy ( waiting for follow up with GI surgeon for feed back from endoscopy but know there is nothing that looks abnormal) Since coming off steroids in Feb it is much improved. I have lost 10 lbs which helps but it occurs to me that maybe the steroids weakened the muscle on the sphincter.
Either way I don’t want to aggravate that area if I can possibly help it. I will check for coated Pred in case I find I can’t do without it.
I didn’t get on with Omeprazole at all or any of its relations and in the end used coated Pred which did the trick. I argued with the GP that it was the same price as uncoated Pred plus Omeprazole. I had had years of acid reflux though in my case it has all but gone since my GCA was treated. Like you I have family history in that department. A period of high stress or unrelenting stress is an extremely common lament prior to diagnosis. I suspect Ben Nevis was holding the gun but didn’t shoot it.
That’s a good tip thank you. As it looks like many people here have it as a life long condition. At least I can strike off ever climbing Mont Blanc now 😁. I wasn’t looking forward to it in any case. And it looks like I don’t have to stop drinking tea either. Hurrah !
Certainly seems to have been the case with me re exercise. Assumed men’s hormones might fluctuate in middle age too. Wonder else could be involved if you only develop it in 50 +.
People do develop it younger but doctors are so fixated on age that they often refuse to see it. I suspect that there are patients with a fibromyalgia diagnosis who really have PMR - there is a lot of overlap in symptoms and the triggerpoints are also found in myofascial pain syndrome which is now thought to be part of the pathology of PMR. A lot of things increase in incidence as you age.
The youngest patient in the literature is 26 years old I think. It's the same with GCA - there is a report of a man of 37 who had GCA - found at the post mortem after he died of a massive stroke. One lady with Takayasu's arteritis, usually found in women under 40, noticed her diagnosis on her notes had been changed. She asked why - "in patients over 50 it is called GCA".
There’s some noise about fasting rebooting the immune system. Any thoughts on this ? Dr Michael Moseley mentions a couple of cases where patients fasted for 3 days which had positive results on rheumatoid conditions.
A small study from some years ago found that a strict vegan diet improved joint pain in half of RA patients but it only lasted as long as they had no animal protein. I imagine fasting might achieve something similar but it is unlikely to cure a problem long term. My daughter and granddaughter both achieved improvements in health conditions after they became vegan - but not cures. It is much easier now but despite the results in the study in RA patients, none of the patients persisted with the diet after the end of the study as they found it too restrictive.
At the end of the day, steroids are the only thing that will really sort PMR out. Some things such as diet or HRT even may make things a bit better, but it is the steroids that are the wonder drug. Find out about the coated version of pred.
Shame! I was really hoping that avoiding something like gluten or lactose or nightshade might make a difference. And for some people I know that the condition has diminished after about 2 years. I have had it for about 8 years already. It took so long to get a diagnosis. I’ll check the coated Pred.
I had a prolapse and have been given HRT to help with my pelvic floor (I had an op to help too!) One of my GPS told me to keep it going as it reduced the chance of getting lovely steroid side effects like thrush and cystitis 😱.It’s worked. However, since reducing to 7mgs Pred I do get the occasional hot flush which I have though was due to sluggish adrenals. But who knows?? I’m not sure I’ve helped 🤔
I’ve often wondered about this too - as oestrogen has anti inflammatory effects - my PMR coincided with menopause - and also a hugely stressful time. The endocrine system is so complex - I feel we barely know enough about it. I’m off steroids but feel achy morning and night but don’t want to go back on them if I can help it.
Had my Covid jab last Saturday. Had a bit of a headache next day but nothing worse
I have been on HRT (Oestrogen only) for over 12 months now, I have just been diagnosed with PMR. I'm not sure it has helped me really, however I am a novis to all this so not sure what to look for.
I find a glass of wine makes everything better in the evening ! But more than one glass of wine impacts the following day. I can never understand why vinegar in say fermented food is considered a good thing to eat but alcohol isn’t ! Glad to know about the vaccine.
I would like to ask a question on here , but suspect that I will not be allowed too. In my 50's I was put on HRT, but was changed to an antidepressant a few months later. Is anyone else with PMR on an antidepressant ? I researched it at the time, but now , 20 years later, I looked into it again for other reasons. There are now different views on Google about how these medications may affect the body. Inflammatory problems were mentioned on several sites. Would be interesting to see how many PMR sufferers take these medications
Of course you can ask it...but to get more replies start a new post then people will get notified....as just a reply in another thread like this it may not be seen by many.
Sorry can’t answer your question, but others will.
I was prescribed antidepressants at the beginning of my diagnosis. They felt my fatigue was down to low mood. Understandable really as I was so wiped out (still am) that I cried all the time and couldn't cope with a days work. 3 months later now diagnosed with PMR but still on antidepressants. My GP wants to get my PMR under control before weaning me off them.
It is miserable being so tired all the time and feeling unwell. Having been someone with boundless energy I could no longer be bothered to pick a sock up off the floor. Going upstairs to get something seemed like way too much effort- whereas I would have taken the stairs two at a time previously. I feel like I’ve aged prematurely by about 2 decades. The only good things that have happened is that I’ve bought a dog which forces me out for walks or I’d probably not bother! And I’ve found some new creative pastimes which I find really satisfying- painting and knitting !
Bert the flatcoat retriever who forces me out the door for walks
As DL says - start a new thread for this so everyone sees it, they won't necessarily see this in the middle of a thread because of tke way this forum works. And if it is relevant to PMR in any way , here you can ask pretty much anything decent ...
There are people who are put on medications used as anti-depressants for off-label uses in pain management. Patients often get upset by being offered such medications and, to be fair, they often don't work for PMR but they DO work to some extent for conditions that cause pain and are either confused with or in addition to PMR.
I think ‘low mood’ is a common symptom of PMR. I don’t think it’s just down to extreme fatigue and the worry about ‘what the heck is wrong with me ‘ day after day before diagnosis either. I think it’s part and parcel of the illness. I saw a rheumatologist , a neurologist, a spine specialist, orthopaedics and back to a rheumatologist before my condition was diagnosed. I think my GP thought I was a classic hypochondriac as nothing too dramatic showed up on my blood tests. I’m no longer down but I’m not up either. I have to work at being happy - something I used to take for granted.
Funny you should say this. My PMR started around the same time as the menopause and I have often thought there might be a link. Quite a few of us got PMR in our 50s, it's not as rare as doctors think. And from previous posts where I have asked if there are others in the same boat as me there also seems to be a link between getting PMR young and having it a long time. HRT wasn't an option for me 9 years ago as at the time is was thought to be dangerous in particular causing cancer and doctors were keen to get women off it. A friend of mine who is 5 years younger than me recently displayed a myriad of symptoms including stiffness in neck and hips which looked a bit like it could be PMR and her GP has prescribed HRT which has miraculously sorted out all her aches and pains. I have been following an aniti-inflammatory, low histamine, low carb diet for about 3 years now and it hasn't cured me - though who knows, maybe I'd be worse if I didn't do it? I does keep my blood sugar levels more stable and I am not so fatigued as I used to be. I also do 3 day fasts a few times a year and I am keen to experiment more with this as Jason Fung and others detail how fasting sorts all sorts of metabolic things out. It's tricky to fast when you are on high steroids though and also in winter, I will try again in late spring. Good luck with your own experiments and let us know how you get on.
I’m only on a lowish dose- 5 mg ( enteric) and reducing to 4 mgs on the dead slow stop reduction posted elsewhere. Recently I’ve tried blending a fruit smoothie ( just fruit, no milk or yoghurt ) - strawberries, raspberries, blueberries as I’ve read they are the best anti- inflams- followed by an espresso seems to get me off to a good start. I know a dietitian would say don’t blend as you lose the fibre but I’m never going to eat that quantity of fruit whole. That said I found some gynest cream in a drawer ( I believe it’s been withdrawn as the .01 % oestrogen is the same as taking HRT ) and whether it’s the diet or the cream or both .. I’m in a good place right now
If I'm fasting I take a Famotidine tablet before the Pred as a stomach protector. I tried enteric coated Pred but was allergic to it even if I try and wash the coating off a bit remains ingrained. Why oh why do medicines have to have food colourings and unnecessary fillers in them? A very small amount of something low-carbohydrate eg a bit of meat proably wouldn't affect a fast.
My Immunologist has prescribed Montelukast and Nacrom on top of anti-histamines and Famotidine but won't give me a dx other than 'possible food senstivities'. He said they don't believe in MCAS at Leeds and don't offer a treament pathway for it so it's the only outcome I'll get and he has nothing else to offer. I'm thinking of asking for a referal to see a gastro enterologist as even though avoidance of high histamine things is my best management plan, life is still difficult as my diet is very limited and eating out a nightmare as a tiny thing like a bit of mustard or malt or a food additive can trigger reactions that range from face swelling and drowsiness to horrid diahorrea. Any tips you've picked up? I thought of asking to see a dietician but only if I can find one who knows about histamine intolerance or vaso-active amines as they are also known. Having kept detailed food and symptoms diaries for 3 years I already know what not to eat I'm just looking for a solution.
Hi - I see a functional doc and dietician in Wimbledon.
You may want to contact them and ask for a referral in your area.
Admin@fmmwimbledon.com.
You may need a stool sample sent to USA to check which gut bacteria you are low on.
Also my doc in Wimbledon (I’m not there anymore) said that there was an immunologist doing research on Mast Cell Activation at one of the Greater London hospitals:
Dr Amolak Bansal - St Heliers hospital
Also Dr Tina Peers treats MCAS - she used to specialise in menopause but now also treats MCAS - drtinapeers.com/mcas
Have you tried the Smidge probiotics plus Lactobacillus rhamnosus GG?
Thanks for all the useful info. I did a gut analysis/biome test with Chuckling goat who are an agent for Atlas labs back in Feb and all was pretty good and diverse but I started taking Smidge probiotics and another histamine friendly one from Seeking Health anyway so things should have improved further since then. I tried taking kefir, starting with very small amounts but just can't tolerate it or anything pickled or fermented. Every few months a try a small teaspoon of yoghurt but it's neer tolerated either. My current strategy is to eat masses of low-carb soluable fibre like leafy green veg that your guts love - I aim for as much variety of veg as possible and 5+ portions of veg a day. Occasional fruit but generally stick to only pears and blueberries or cherries. Sometimes risk certain varieties of apple eg Gala if it's peeled but they usually trigger the guts, I think it's the sorbitol. Food generally steamed or roasted not fried to keep histamine low. I've joined all the Mast Cell support groups on Facebook, they're a mine of information and support just like this forum. I tried to get an appointment with Tina Peers but she is so booked up dealing with long-Covid patients to take on anyone new, I'll re-check the situation. I wondering if I could get a 2nd opinion and referral to another Immunology dept such as London - not sure what my rights are there but I will find out as I deserve more investigations and a diagnosis. As I said to the Immunologist and my rheumatologist - you can't just leave me like this when I'm even allergic to water! I haven't even had a F2F appointment yet due to Covid. I did investigate functional doctors but put that idea on hold due to Covid and the difficulties of getting to see anyone, I might go back to it in a few months' time.
I'm putting all my faith into trying to nurture my guts through repair and various forms of fasting, something I'm finding very few docotrs know anything about, so are very sceptical, though the bladder specialist I deal with is open-minded as she says diet seems to help some of her patients - the recommended things to avoid for IC/Bladder Pain Syndrome are all high histamine as I pointed out, which she wasn't aware of though she had come across FODMAP.
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