All things PMR: Hi All, I was diagnosed with PMR... - PMRGCAuk

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All things PMR

oatleypark profile image
16 Replies

Hi All,

I was diagnosed with PMR December 2018, I turn 67 soon and had been healthy otherwise playing golf and tennis on a regular basis, I considered my diet to be reasonably good and healthy so was quite surprised to be diagnosed with PMR.

In trying to identify what diet changes I may have made prior to the problem I could only identify imported dried apricots from Turkey which I added to my oats in the morning along with a banana and mixed nuts and seeds as the only significant change.

After blood test confirming PMR my doctor prescribed 15mg daily of Prednisolone for a month and the result was pretty well instant no more pain and stiffness. After the first month the doctor brought me down to 12.5mg daily and today I have started on 10mg and so far so good.

Needless to say the only change to my diet has been the dried apricots, not sure if they were the cause or trigger but currently all well except that three days ago I ate some dried pineapple rings and woke up in the middle of the night with extreme pain in shoulders, hips, knees, feet and hands, originally I only had pains in the shoulders and hands.

The sulphites/sulphides used in dried fruits appear to be at least one trigger that causes my PMR, the amounts of sulphites/des are not controlled in overseas foods, I am in Australia and although the disease causes and effects are different for everyone I would consider lowering any foods or drinks high in sulphites/des.

When I am finally off the medication and hopefully free of PMR I will be able to update results and any diet changes, forgot to mention I have also cut down on my vice of dark chocolate.

Cheers

Oatley Park

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16 Replies
Bronni profile image
Bronni

While ‘clean foods’ are optimal in diet and certainly can’t hurt, I have never heard of the cause of pmr being dietary. It seems more commonly atributed to stress or a viral infection. Good luck on your journey through this weird illness!

oatleypark profile image
oatleypark in reply to Bronni

Hi Bronni, thank you for your reply, after reading a number of articles I too was skeptical but all I can do is keep away from dried fruits as they have proven to be a problem and reaction seems pretty immediate.

I have researched the effects of sulphites/des and they can have have different effects on different people including asthma and in extreme cases anaphylactic shock, the sulphites may not be the cause but they certainly have a huge negative effect on me.

Cheers,

Oatley Park

pollymarierose profile image
pollymarierose in reply to Bronni

That's what I read too. Either a trauma or illness brings on PMR

Marijo1951 profile image
Marijo1951

I doubt if the dried apricots in any way caused the PMR, but it is always a good idea to avoid sulfides as far as possible. There are several brands of unsulfured organic dried apricots available in the UK and, although they don't look as immediately appetising as the sulfured variety, they are delicious. I'm sure they must be available in Australia too.

oatleypark profile image
oatleypark in reply to Marijo1951

Hi Marijo 1951, thank you very much for your reply.

Cheers,

Oatley Park

PMRpro profile image
PMRproAmbassador

You have also to remember that PMR is actually the name given to a set of symptoms that may be due to a whole range of underlying conditions. The PMR we discuss here is probably a form of autoimmune vasculitis allied with GCA. But there are other things - including food or additives that can cause the same problems too.

SheffieldJane profile image
SheffieldJane

You are coming from a very fit base, that warns you of tiny harms. From what I have read and learned so far, this will not cause your autoimmune reaction. It’s much more likely to be overwork, unusual stress, a virus, hereditary perhaps. Keep up the vigilance though, hopefully you will have a short episode.

oatleypark profile image
oatleypark in reply to SheffieldJane

Hi Sheffieldjane,

I have to agree with you that sulphites are unlikely to have caused or triggered my PMR but I am quite convinced that the sulphite preservatives have been a problem since being diagnosed.

Cheers,

Oatley Park

Twopies profile image
Twopies

I react badly to sulfites and salicylates, a double whammy. My diet is very limited. Whether those intolerances are responsible for pmr, I just don’t know.

oatleypark profile image
oatleypark in reply to Twopies

Thank you Twopies I am of the same opinion.

Cheers,

Oatley Park

Bobbikins profile image
Bobbikins

I was diagnosed with PMR four years ago. It seemed to be triggered by stress due to a bereavement. I’m down to 2 mg of Pred.now but struggling to get off it. Recently noticed when I had flu that my PMR miraculously disappeared. I think this is because I wasn’t having my daily glass of white wine ( I understand wine contains sulphates). I have stopped drinking wine and have noticed that if I have even half a glass of wine the aches and stiffness come back.

oatleypark profile image
oatleypark in reply to Bobbikins

Hi Bobbikins,

Thank you for your response, the intention was to highlight my specific response to sulphites in case it may help others who may have not considered it a problem for them.

Cheers,

Oatley Park

Bobbikins profile image
Bobbikins

White Wine contains added sulphites which act as a preservative, as do dried apricots. I was sharing my response to sulphites (aching muscles and stiffness).

dancersize profile image
dancersize

I am also in Australia (Bendigo Vic) You have had the same beginning as I did. At 10mg the rheumy gave me the script for 1mg tabs. When I had problems from 10 to 9 she suggested 9 .5. Slow slow tapers seem to help. My first symptoms were swollen hands months prior to diagnosis in Aug 2017. I'd been trying turmeric and blamed that but GP didn't think so. Interesting about dried fruit. I got down to 6 then was stuck for six months. Rheumy added methotextrate in January and so far so good. Now down to 5.5 and tapering to 5. Feeling well enough for regular swimming and dancing. Best wishes on your PMR journey.

oatleypark profile image
oatleypark in reply to dancersize

Thank you and best wishes to you also, have just started on 10mg after being on 12.5 for a month and 15 a month earlier so far so good.

oatleypark profile image
oatleypark

Additionally my doctor suggested I take turmeric which I am currently taking 1,200mg cannot say if it is having any effect but certainly no nothing adverse noticeable.

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