PMR with night flushes. Histamine?

Hi Lodger. The diagnosis is based on symptoms and elimination of other possibilities through blood testing. My GP did all of them, excepting CRP. ESR was normal. There is currently no diagnostic test for PMR that I know of. I haven't had an arterial biopsy because there is currently no evidence of cranial arteritis.

I don't agree that PMR pain is continuous unless controlled. In many PMR patients the condition resolves naturally without drugs after several years.

I'll repeat what I said in the other post in case you miss it:

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Many patients (male and female) already have low bone density BEFORE pred is introduced and that CAN be dealt medically with if severe enough. If it is early then exercise and supplements can be used to improve it - yes, even with PMR, ask Anhaga who improved her t-score from -2.1 to -1.6 in a year just doing that. Osteoporosis is probably one of the lesser evils providing you have a doctor who is aware and proactive.

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Inactivity is a major risk factor for osteoporosis, so don't think not taking pred will prevent that. I had PMR for 5 years with no pred. When it comes to managing life with PMR and no pred I know what I'm talking about - it is hell. It leads to inactivity, weight gain, depression, isolation, falls because of poor mobility, balance and spatial awareness. Never mind pred causing all the side effects - PMR alone can do it all, believe me.

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And as for PMR resolving on its own in a few years - please come back and tell me when it happens for you. Pred only manages the condition, it doesn't alter the disease itself so I think it is fair to say that patients getting off pred is generally an indication of how long PMR would last with or without pred. I can tell you now that after more than 10 years involved with 3 different UK PMRGCA forums with members all over the world, the times for remission quoted in the last link I gave you are pretty much right. About a third or probably less get off pred in a couple of years. A bulk need up to 3 to 5 years and a few of us are around a lot longer though mostly on a low dose, in single figures. Please don't try to tell me that the forums are only people who have it badly - no-one knows which group they belong to when they arrive here and most people do tell us when they get to low doses or off pred altogether. They also make friends on the forums, in some cases real F2F friendships in the UK since we have a lot of support groups too, and hang around to make other people's journeys with PMR and GCA easier by providing valuable support and advice.

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As for PMR pain not being continuous - it is for most people when they are honest although I did find that in the later afternoon after a heavily adapted aquafit class and Pilates class in the morning, also heavily adapted so I could manage it, I could move better but the pain was there in the background. About the only other thing that worked was a glass or two of wine - because, it was assumed, of the vasodilation effect in all cases that improved the blood flow to the muscles. But even if PMR resolves in "several" years - it is a long time to have pain, even if it is just 50% of the time. I did it for 5 years - but it cost me a fortune in gym fees, I worked freelance so could choose my own hours and I had a gym available that provided a warm pool and the classes but when I couldn't get in the car to go there, I couldn't go. Public transport was not a realistic option to do it because of the PMR. The cost and time required - probably 3 hours minimum even with a car door to door and a single class - means it isn't an option for most patients whether they work or are retired for one or other reason.

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I have an unusual form of PMR - very definitely atypical. It started when I was in my very early 50s, I have "normal" (i.e. not out of normal range) blood markers, it has never ( as far as we can tell) gone into remission and I still have it after 15 years - I'm not alone in that mind, there is a thread on another forum with quite a few of us in their mid-teens years of PMR! I have been as low as 5mg but had another severe flare taking me back to 15mg because of cardiac effects associated with the vasculitis which couldn't be medically managed except with pred, I now have a pacemaker and am starting to reduce the dose.

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And yes - you will find the constant pain (which you seem now to be admitting) and lack of sleep, together with all the rest, WILL erode your heath. In the long term, probably more than the erosion of health you seem to ascribe to pred. No, you possibly won't be aware of other damage - to the arteries that are affected. You can't see it. You can't go by weight - inactivity means you use fewer calories.

But many people are only too happy to stick their heads in the sand. Maybe I have been a bit forthright here - but week after week I and others answer similar posts from people denying what is staring them in the face: that they have PMR or (even worse) GCA that isn't being managed properly and is putting them at risk of even worse. One lady yesterday had all the signs and symptoms of GCA - but repeated at least 6 times she had had a negative biopsy and kept asking the same question. That was some weeks ago and does not mean she doesn't have GCA - it means they didn't find what they were looking for, Really not the same thing at all. She had visual symptoms, felt dreadful and had a terrible headache on top of all the PMR stuff. Textbook - too textbook to ignore we all felt.

If this has appeared twice I'm sorry - site messing about

Eileen when I started this horrible journey with pmr, it took the doctors nearly 16 months to send me to a specialist .I was getting migraines more often and then every day they were only concerned about the bad heads ignoring when I told them about the other pain . I never want to go back to to 2017 in the end litteraley I broke down in the surgery with another episode of migraine and still the doctor ignored the other symptons I was begging her to do something. Anyway long story about a long painful road. Just to say you and this forum have helped me so much its a comfort to know other people have the same problems .I reduced pred to 1mg a day in January and then had a flare up with a Migraine you advised me to be carefull I increased to 7mg which settled things , in feb I dropped to 6 still ok , so dropped to 5 for a few weeks but recentley walking became a bit iffy , and my arms were stiff and tender to touch, so I have upped it to 6 again .I realise now the migraines could of been the surface of GCA could I be right I am terrified to have that. I have also stopped taking the Aldronic Acid tablets as I have read bad reports on these I am still taking my calcium tablets, am I doing right. I line dance twice a week ,garden and walk although do get tired but funnily after a dance session I am full of energy .Sorry for rambling on .

Thank you Eileen, for taking the trouble to write your two informative posts. What a history you have, such a wealth of hard earned experience from which we all benefit. I wish it wasn't at your expense. However, as always you are concerned for someone else, someone like Roger who is struggling as we all are. I hope very much he adds the information and advice he has received from you and others - not necessarily to replace his research but augment it- and lead him to safer channels for management of this condition. Good luck to him but huge thanks to you. You are very much appreciated. x

I also often feel much better after some fairly vigorous exercise, but I have to be careful not to overstrain muscles which seem much weaker than they used to be. And although I never had the headache you describe, I was like you, standing in the doctor's office, with tears running down my face saying I felt I had fallen off a cliff. At the time I had no family doctor, he having retired and his (useless) replacement having left. They wanted me to go to a walk-in clinic and all I could think was I simply couldn't manage that. Thankfully a doctor agreed to take me on (no one in the practice was taking on new patients at the time) and she diagnosed me almost instantly. I'd found my symptoms matched PMR when looking on line but didn't believe I would ever get anything which needed steroids for treatment. When I was given my prescription for the pred trial I couldn't wait to take that first dose! Within three days I was completely pain free, including all the other aches and pains which were not PMR!

Hi Maureen. The pain and stiffness are manageable in my case. It just makes everything I do more difficult and take more time. I can certainly understand why you would have to give your job up. Some things like bending down to pick something up is pretty much impossible at times. I've found moderate exercise is helpful and I've also found soaking in a hot bath or taking a shower reduces the symptoms. I think that's because it increases blood circulation, which might be at the root of the cause of PMR symptoms. On the skin issues, I have eczema that has got much worse with the PMR. Have you experienced this?

I had quite severe skin problems - probably part of the autoimmune aspect of PMR causing an allergy to wheat starch. Omitting wheat from my diet solves the problem. It isn't gluten - I can eat other gluten-containing grains and not gluten-free wheat-based flour products.

They were for me for 5 years - but I was miserable, unable to function well and in pain all day. Nights were, mercifully, better. I discovered how much it affected me when I was unable to drive for another reason - and I was housebound, unable to go anywhere during the day as my husband was at work. Nothing would persuade me to go back there: weight gain, pain, depression, isolation. No thanks.

Acne is a listed possible sign effect plus extra sensitivity in the sun . I have a very slight rash on my face. On 11mgs

Did you take steroids during those years? I find the constant pain and sleep loss is eroding my heath, but I also find that I can do most of what I used to do and sometimes I feel better after an active day. I don't have the sense that the inflammation is doing much damage. If it were I would expect to be losing muscle mass, and my weight is constant.

I'm interested in your experience after starting prednisone. Are you able to taper down your current dose?

Why don't you ask if you can try pred for a week only. You can then see if it helps or not. If it really has no effect you can then just stop immediately.

I'll consider that. My GP actually suggested that as a means of diagnosis. It means a referral to a specialist and some wait time, but I think should be making that connection in any case.

Why can't your GP prescribe pred for a week for you? There is no reason why they should not. My GP prescribes mine.

Roger, Eileen was explaining to you that for five years she was not diagnosed nor treated and describing the condition she was in. Pred gave her back her life. She has also explained in her posts how her life has been since taking pred, described at great length in fact. I hope you have taken the time to read her replies to you. Just about everyone in this forum and in a couple of others is deeply indebted to Eileen for her generous sharing of her expertise. I doubt there is anything she doesn't know about PMR. Unlike authors of the medical papers we can read she has full experience of PMR from the inside, both treated with pred, and undiagnosed, untreated. I can appreciate the untreated part as I was similar, but only for one year. By the end of that year I was almost incapable of driving mey car any more as I couldn't turn my body reliably to shoulder check. I could barely stand up. One evening after struggling through my physio exercises it took me half an hour to get up off the floor again. I had to plan how to get out of bed in the morning. Thankfully a new doctor agreed to see me and she diagnosed me almost right away.

Hi Anhaga. I'm not putting prednisone treatment down. It clearly has been a boon to many people who are needlessly suffering and may have gotten a bad diagnosis. I can only wish them every success. I also don't need anyone to tell me about PMR because I've had to cope too and I have done my own research.

Have you researched for 11 years like Eileen?

More like 15 and what is more she is a representative on various research organisations one of them Omeract on behalf of patients.

Eileen worked in the NHS for over 17 years, before her husband, who is a well respected researcher in the cardiac area moved into another country to further his specialism. A 1st Class degree St Andrews, Scotland and loads of empathy. Both her and her husband exist to help their fellow men. Eileen also is close to some of the leading researchers into PMR &GCA.

In a funny way, if Eileen had not fallen into PMR and happened to be in the UK the day my local radio station said we were launching a DVD called 'You are Not Alone' explaining both PMR & GCA, in words of one syllable ( done by medics who all complied with the request to use language patients could understand and gave up some of their valuable time so freely). Which meant those newly diagnosed never having heard of either were able to learn and help their family and friends to understand why they looked well, but were suffering an auto-immune illness.

Without this site and the help they offered - and 5 determined women who met on this site and then set out to raise awareness and get more research done. Now 3 charities and support groups in the UK.

I often wonder how much I personally would have missed out on.................never mind the many others.

I make no apologies for this post although both of them will be cross with me. Now, at 81 and having given up the Chair of Charity. I can write freely. I know they will both forgive me.

In that case if,

'you do not need anyone'

why did you come to this particular forum looking for a solution to a problem with insomnia and a rash, when 99.9% of people on this site are either people with PMR and/or GCA and are taking steroids, or close relatives and friends seeking hard information in relation to both auto-immune illnesses.

Surely you should be talking to your medical people looking for an answer to those problems.

Then can I ask why you are here?

I posted as I did because Eileen had already answered your queries in considerable, thoughtful detail.

I wish you well.