I am a 48 year old male who recently recovered from PMR ( unusually young and wrong gender, yes I know! ) and I came back into this site just to give a personal perspective to those still suffering . Many readers are often recently diagnosed and looking for answers or hope, it’s not often that a “survivor” comes back to report that there is life after PMR, so here I am.
Firstly,I’m not a doctor, I’m an engineer so don’t attach any more weight to my views than you would do to any other non medical expert, feel free to assume I may be the village idiot and NEVER act on my views without discussing with your doctor. Right, now that that’s out of the way let me tell you I know what it’s like to have PMR, first the mysterious shoulder pain rolling over in bed, then the worry and confusion , gradually increasing stiffness , can’t tie my shoe laces , feel irritable and exhausted , overwhelmed , visit GP, referred to rheumatologist , rounds of blood tests ....terror that it’s alll sorts of worse things, then finally the diagnosis by elimination it’s PMR ,ok now we can do something, ,then the magical effect of steroids, often overnight, amazing effect, WOW I go from half dead to feeling perfect in 12 hours ...hurray I’m cured ? , no not yet,then maybe a degree of depression that this is not an overnight fix or worries about side effects of “pred”., osteoporosis , mood swings , weight gain, acne,hamster face ... I’ve had it all and come out the other side, it took me exactly 36 months but I followed the rheumatologist’s regime and had a few false dawns along the way where I had to up the dose again but I got there in the end , it’s been 9 months now that I’ve been off the pred, the pain is gone, there is some residual stiffness in the morning or after exercise but it goes away midday or after a hot shower . Life has returned to normal or as close as it can be, I still take the calcium/vitD because I did lose some bone density to the steroids but it was a moderate price to pay for shaking off the monster.
so what have I learned? Here’s a few thoughts. PMR is an autoimmune condition so the things that affected me may not be relevant to you but I still want to mention them in case they help others . Firstly I have learned without any doubt that certain foods aggravate this condition , this is especially true when you are coming out the other end of treatment and are on low doses of pred where it’s easy to get a relapse. The immune system has broadly two response mechanisms to external attacks, those being TH1 and TH2,autoimmune disease responses seems to occur when one of these 2 responses overreacts or becomes “stuck” on high alert , perhaps triggered by a previous virus or viral illness ,in particular a lot of people anecdotally have developed PMR after having had Epstein Barr Virus ( Also called glandular fever or mono nucleosis or “.mono” ) I’m one of those , Some doctors poo-poo this but there are too many of us for it to be random. However probably/possibly other things can bring it on as well, including being run down or stressed combined with a viral illness. Anyway, however you got it doesn’t matter you can’t change history and may never know, work with what you know today , you have PMR and you need to fight and suppress it until it decides to leave you .Personally I believe that I was what’s called TH1 dominant . My TH1 immune response was over reacting causing inflammation. Rheumatologists will rightly tell you it’s IMMENSELY more complicated than this but this is just a layman’s explanation. Now back to the foods issues . I can tell you that I tried and did EVERYTHING while I had PMR and I only came to one truth. Certain foods INCREASE certain immune responses and sort of suppress others , so if for example you are TH1 low and TH2 high then green tea may make you feel wonderfully better, however if like me you are TH1 high, green tea will make you feel dreadful , like your skin is crawling. In my case five things made me feel awful and caused all the pain to come back when I was on low doses of pred and coming out the other end of this illness, and they still trigger pain even now that I’m off the pred nine months, and this is why I mention them( and to any doctors or rheumatologists reading , please consider trying this with your PMR and also your arthritis / RA patients , you may be surprised at the effect it has on them, many of your older patients are probably glugging tea or coffee like it’s going out of fashion , so persuade them to go without for a week only and see what happens ).
The five items that caused me severe problems are as follows:
1) green tea( my skin crawled)
2) black(regular) tea( pain within 20 mins)
3) coffee, (pain within 20 min,including decaf and instant)
4) wheat( bread ,pizza , white flour etc, pain in my back and rib cage joints within about 2-4 hours and lasting for a day)
5) red wine(possibly also whiskey/bourbon) , muscle / joint pain next day .
So do yourself a favor , take all of these out of your diet for a week or two , then reintroduce them one at a time until you notice pain or you feel like crap , if you note this response give that item up forever.dont bother fighting it, just walk away from it.
I know how hard it is to give up tea and coffee , the comforting pep up and a nice little beverage to sip with friends etc but they are just not worth it if they are triggering your body to scream “argh! I’m being poisoned”, so suck it up and learn to like hot chocolate or ginger infusions and get on with your life, if wheat gets you then just adapt to the multitude of wheat free products out there, you’ve never been better served, if red wine hurts learn to love white...if none of the above affect you then consider what else you eat ,it may be different for you ,be vigilant , listen to your body ,make a food diary if necessary , be extremely wary of all stimulants, they possibly trigger immune responses, take note, adapt and move on, take hot baths, take more holidays , minimize stress and be kinder to yourself , Good luck to you all and remember ... like those visiting relatives and bad smells ... it goes away eventually ... Rob
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Pmrsurvivor1
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Rob, you have hit upon en easy to confirm, or dismiss, factor that can be enormously helpful to those of us who are still struggling to find “something that helps”.
It is clear to me that some types of alcohol have more negative impacts than others....eg, wine vs. clear spirits, wine has more negative after effects, and makes it heard to get good quality sleep.
White carbs make me fat... my PMR body does not like the concentrated carbs in pastas, bread, etc. nor does it like dense carb fruits, like mango, pineapple, etc.
Some things make me feel well..eg, vitamins and mineral supplements containing Vit D, and magnesium.
Water, in adequate amounts...eg., at least a Liter a day, maybe twice that. Many of my symptoms lessen when I drink water. I know all the excuses...so I add cucumber slices, lime slices, and often leave water sit out overnight to allow dispersal of chlorine. However, and whatever it takes, I drink water and I feel better.
Thank you for your comments, very intreasting read.
I myself, is a newbie to this group, as I have been suffering for years, with neck, back pain then both shoulders operated on, prescribed neuropathic pain relief amertripaline & Co Codemol for years and if I forget one days tablet I sure do know it. then I got a lump under arm, the menopause etc, after blood tests with lump turns out I had, like you say the dreaded glandular Fever. and yes since then symptoms have increased, hip pain ,heal of foot pain, back of knee pain, swelling now and again. Basically every part of me hurting, at 48 years young,
Oh then the falling over or up stairs don’t help. Now I am been treated for De Quervain's tenosynovitis, with a prescription of prednisolone, Although I have Never felt so wonderful in years, pain gone from all areas, no need for Co codemol mood increased, eyesite increased. Dr would prescribe for only a week at a time up to 3 weeks,then Dr stops saying can only have it for 3 weeks max, because of adrenal glan.
Just had bloods done at my request as, I said to dr, I should not be feeling like this at this age. I see 80 year old walking around more agile than me. I want a full health check done something isn’t right. Blood results have come back, saying normal however at the bottom it showed a link called Information About Your Tests
The links below open a third-party site that provides information on tests
Plasma viscosity
Blood results
Plasma viscosity 1.53 cP [1.5 - 1.72]
A raised plasma viscosity (PV) is a marker for I nfection, inflammation and malignancy.However a normalresult does not rule out disease. In an otherwise well patient a raised PV may have no identifiable cause.
which lead me to polymyalgia rheumatica, when I read the symptoms A light bulb moment happened. I have expressed all to two Dr’s and the nurse. I am sure they think I am mad, now I have a name for my ailments I want it either confirmed or ruled out. I will be going back to see my Dr on the 9th and will be requesting to be referred to a rheumatologist.
Thank you for taking the trouble to write all this down and post it here. It is kind of you not to forget those of us still suffering with GCA and or PMR. It is interesting about the food and drink sensitivities. Suffering like this certainly concentrates the mind. I am glad you got well in a relatively reasonable time for PMR. It was particularly unlucky to get PMR at such a young age too. You make interesting points about the Epstein Barr virus. I know many of us felt unwell and below par for sometimes years before diagnosis. Thanks again for this missive from the “ Well side”. Very encouraging.
Thank you for thinking of those of us who are still in the club nobody wants to join. What you have written is both encouraging and informative. Imagining no tea though 😣
Your advice and 'good luck' are appreciated. It is reassuring to know that there will be a happy ending to this. Thank you for taking the time to post this.
Thank you for this extremely informative post and a further thank you for remembering others who are still ‘journeying’ now you are, thankfully, out the other end. Much appreciated.
Hi Pmrsurvivor, glad that you've come through it but be watchful! My experience was similar although started later at age 63 (also male). Off the Pred after 32 months but it came back after a 19 month break. Since then, five more episodes over 15 years with increasingly shorter Pred free periods. Now on 4mg after 30 months of episode 6, Dr Hughes says it's "refractory" (about 5% of sufferers) and I may need low dose for life. Still pushing the boundaries however and trying to get to 3mg this year. Your dietary experiments are interesting, the only thing I have found to have much effect is giving up raw onion, a favourite of mine which I had in sandwiches most days. Can still just about tolerate it cooked. Best wishes for a long recovery.
Thank you very much for remembering those of us who still have PMR/GCA. For obvious reasons this site gets skewed towards those who have problems which can be alarming for those who are new to the game.
I am especially interested in your finding that certain foods or drinks can be problematical. In my job testing and advising people about food intolerances I have seen many people over the last 25 years with a myriad of conditions, including rheumatoid arthritis. Fatigue is always a problem for people who are consuming foods to which they are intolerant, and that always goes away when not eating their problem foods. (I am not saying the fatigue from an auto immune disease will go away, but it might be helped)
Point to note from the data I have collected...people become intolerant to foods which they consume most frequently, at least twice daily....hence tea and coffee in adults accounts for one in three people whom I test.
A word of warning...if my person on this forum considers giving up something they have been consuming frequently for many years, they WILL get withdrawal symptoms...headaches, muscle aches, irritability, more fatigue. So you may get confused, especially if you are tapering at the time. It may be better to cut down gradually.
Another point to note....food intolerances are usually triggered to begin by a virus, an illness, starting new medication, stress....so it might be that PMR and it’s associated treatments could act as a trigger. DON’T FOR A MOMENT THINK THAT I AM SAYING AVOIDING FOODS YOU ARE INTOLERANT OF WILL SORT OUT PMR. PREDNISOLONE IS WHAT DOES THAT. But considering avoiding foods you are intolerant to could make you feel a lot better.
I am interested to read that you say people become allergic to foods that they eat every day?
I am surprised at that. I find the opposite.
To date there are 17 I must avoid eating like the plague! So I take this very seriously. To my disappointment having been able to eat gluten free couscous, I did not eat it for a space of about 6 weeks; went back to eating it and found to my horror that I now react to that too, so that is something else I have to avoid, sadly.
Knowing that I have a compromised gut biome, heaven knows how few beneficial bacteria I have left, I find if I leave off from eating something for too long, it's harder for me to cope with, implying that the corresponding bacteria linked to digestion of that particular food are either no longer present or in too few a number to cope with the food??
I would be most interested to know more if you have the time please.
Pleased to hear you are through to the "other side" and in a reasonable time.
I'm not sure I agree about mononucleosis except that it may well be the final straw that overloaded the immune system, just like any other stress on it, and you are one of relatively few people with PMR I have met on the forums in the last 9 years to have mentioned it. And that does come to a fairish number on 3 forums.
Foods - I think everyone is different there. Black tea and red wine don't make me worse - as someone has said, it did help quite often pre-pred! But I don't drink heavy reds anyway - I have an allergy to something in some so if I do drink reds I'm not familiar with I take an antihistamine under orders from the immunologist! Our local reds are light and pose no problem. I'm also allergic to something in the structure of wheat starch - so rarely eat it. When I do eat small quantities of sourdough or other wheat varieties I don't have problems.
Take hot baths?????? No - showers all the way - I'd never get out of a bath!!!!
Thank you so much for taking the time to write this, Rob. I took my first dose of steroids yesterday and feel exactly as you describe. Havng read everything I can find on the subject I have also noticed that not so many people who have a smooth(er) ride tell their stories so I am so pleased to hear yours. I am also in the process of investigating and changing my diet so I will take on board your experience. My very best wishes and thank you again.
Thank-you for excellent observations and thank-you for posting
Discussing Fibromyalgia, PMR and the sexism that exists within the medical profession with my excellent GP only last week, (women are vastly under-diagnosed in respect of suspected heart conditions, as they so often get fobbed off in comparison to men who are instantly seen to when suspected. A woeful state of affair he was sorry to say)... He also mentioned that whereas women seem to have Fibromyalgia in greater numbers, it seems PMR seems to be more prevalent in men? This led us to speculate that there may even be a sex hormone link? He also explained that only slowly are the links with sex hormones being understood better in relation to other endocrine issues. His diagram was very good.
I agree totally with your empirical observation with regard to adverse Immune responses to food/drink.
My list is ever growing.
My visit yesterday to to the hospital was better than expected! The young doctor is finally organising for me to see an Immunologist. As recommended by my other seniors Doctor too, she is organising an open letter with instructions for me to have immediate blood tests when I have my next severe response, so that there is no fobbing me off.
Currently, I have 15 things I cannot ingest for provoking a severe response.
I too had Epstein Barr.
I have also lost a lot of lymph tissue: both tonsils and appendix removed.
With regard to commercial red wine...and prosecco and balsamic vinegar, they all contain Sulphites. This preservative compound triggers the Mast Cells in the Immune System to granulate, provoking mass inflammation throughout the body.
However, organic balsamic without Sulphites causes me no problems. Neither does cabs or champagne, but Prosecco I avoid at all costs.
Thought you might be interested.
Definitely stick to your exclusion diet.
Anything else that springs to your methodical engineering mind, I would be very happy to read from you!
Pleased to hear another success story - me GCA in remission for almost 2 years.
As you say, some survivors or those who have easier journeys don’t stay on the site, which is a great pity because new patients need that reassurance, and advice that PMR or GCA does not mean the end of life as we know it. It may temporarily, but not permanently!
Some of us do hang around though, it would be nice if you did as well. Another viewpoint is always welcome...especially as you say you don’t fit the norm..age and gender wise!
Great post 👍 Just one question. Did the hamster cheeks go? 🙏🏻
Thanks Rob. Great to hear some positive encouraging words
I really enjoyed reading your post. I also was a little young at 56 hence it took them time to feel happy with diagnosis. I too have a suspicion about the Epstein Barr virus as I continue to test highly positive for it although I understand once you had glandular fever you will always be positive. I don’t find foods make me feel any worse or better. I do know my heart can race a bit after certain food eg carbohydrates.
I’m two years into this so looking forward to joining the survivors club in next few years! Fingers crossed.
I’m not sure this belongs here, but I want to add what brought on my PMR. My PMR was a differential diagnosis to a Non-Hodgkins lymphoma diagnosis. PMR showed up first as a result of an inflammatory response to the developing cancer going on inside my body. Once diagnosed a few months later after my PMR diagnosis, I treated for the lymphoma with Rituxan. It is called “chemo”, but it is actually an immunotherapy infusion. After a month of treatment, my CRP number went from 82 down to under 5. My lymphoma went into remission and my PMR is gone at this point - almost a year later. My rheumy wanted me to continue to tritate down, and next month I will be on only 1 milligram and then I will stop prednisone altogether.
I realize that not everyone will have this case scenario, but I wanted to offer up a somewhat quizzical experience for PMR to show up suddenly one day. It was clearly a result of an inflammatory response going on in my body. I am trying to stay inflammation free by following many of the same guidelines that Pmrsurvivor1 provides above.
Hi Rob, You have summed up my journey with PMR/GCA though I haven’t really considered the food side of things much. I do know I can’t drink alcohol anymore though.
How is your immune system after so long on corticosteroids ? My adrenal glands weren’t functioning properly when tested about 6 months ago. I can’t shake a virus at the moment and wonder if this is still a problem and the reason for this prolonged virus. Mozz
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