PMR diagnosis 17 months ago

[ParoaPrimary]

I have been diagnosed with PMR and wish to learn as much as possible on the journey to ' wellness '.

[DorsetLady PMRGCAuk volunteer]

Maybe have a look at the FAQs- see Pinned posts or banner just below your question - there are stories there from PMR patient's...and maybe start with this [albeit that you are not particularly new ] -

healthunlocked.com/pmrgcauk...

You might also get some information from related posts, but question probably needs to be more specific for meaningful replies.

[PMRpro Ambassador]

Hi and welcome - as DL has said, a good place to start would be with the FAQs and just by reading past posts.

[Zebedee44]

Hi, and welcome. well you have found the right place to learn all about your illness and it’s a shame it has taken you quite a long time to find this excellent source of information. If you add a bit of information to your biography you will probably receive more targeted responses to your enquiry. PMR effects more women than men so you might get a slightly different response from the male readers than the female but be assured we are a very supportive and experienced community.

You probably already know by now that PMR has its own agenda and doesn’t conform to the doctors view of the condition. We each experience slightly different journeys with PMR in our lives and find a new “wellness” of mind and body.

Personally I have continued the life I had before PMR with my amazing pony who brings me daily physical challenges and emotional support, others here manage to continue their own passions to feel the best they can in the circumstances of living with PMR. Is there a particular thing which brings you the feeling of wellness that you feel you are missing?

[ParoaPrimary in reply to Zebedee44]

Thankyou to DL,PM Pro & Zebedee for your kind welcome.My apology for this belated reply, having had a busy time recently.As i initially stated i was diagnosed with PMR in May, 2021 and started on Prednisolone 15mg, tapering down to 3mg when i experienced a 'flareup'.I had the usual severe pain in the legs,arms,fingers and back of legs and at that point had a CRP reading of 28.Before commencing on Pred. i had a bone density test which showed Osteopenia.When i had the flareup at 3mg the rheumatologist said to go back to 7mg and said she would put me on Methotrexate as it was the ' lesser of the two evils '.I was concerned at the side effects of ' Metho ', took it for a few weeks but then consulted a naturopath who prescribed a ' herbal cocktail '.After only one month on the herbal cocktail my CRP readings which had been 28.0,9.2,5.6,9.0 magically dived to 0.7 when the disired range is < 3.0 .So for all the months i was on Pred. i could not get below 5.6, when the desired range is< 3.0.At the moment i am taking 1mg of Pred., have minimal symptoms, a bit of stiffness in the neck and fingers and on my journey from diagnosis have worked as an office cleaner, the exercise being important for this condition.I became aware of this forum from a reference in Kate Gilberts' book recently and have found it to be most helpful.I also have 'The Autoimmune Solution 'by Amy Myers, herself an autoimmune sufferer.She gives very detailed information and recommends getting rid of glutein, coffee,tea, alcohol etc. plus grains etc. in a bid to get inflammation down.I have been using her advice and have dropped 7kg in a week and a half, have lower blood pressure and don't feel hungry as before because of cutting breads, cakes etc. from my diet.I believe that apart from the medication i am taking the change in diet is very important as most of us either eat too much or ' adulterated ' foods, not as Mother Nature ' intended and of course the laws of nature are ' not negotiable '.Dr Amy Myers says she has helped thousands of patients and in taking her advice i hope soon to wave goodbye to ' Pred' as at the moment my symptoms are very slight and with the dietary assistance think i can get a good outcome. Cutting out food items we have enjoyed over the years can be hard at first,but when you find weight loss is happening and generally you feel better you realise the sacrafice is worth it.There is a realisation too that for many years you may have been eating harmful foods ' adulterated ' by the food industry.I am just getting familiar with this forum and thank members for the invaluable information they have presented about their ' journeys 'which help many of us on our ride to ' wellness '.My feeling is that what we can learn here is more usefull than that derived from our GP'S who possibly have never had a patient with PMR/GCA.I shall spend more time studying this website to increase my knowledge.My personal journey and thoughts are rather ' rambling ' but if my contribution can assist other members that will be very satisfying,

[Zebedee44]

It’s good to hear from you, and it sounds as if you are well on the way to wellness yourself with what you have learned from your reading and personal experience with PMR. The medical profession claim it lasts two years, and you have been one of the lucky ones for whom this has been the case.

I too have embraced an anti inflammatory diet by cutting out meat which is mainly grain fed. On very rare occasions i still eat grass fed meat. I eat a lot of raw food, cheese , quorn and minimal processed foodstuffs. The prospect of cutting coffee and tea is rather daunting to me but I mostly drink decaffeinated. Is that ok? Personally I have never noticed any improvement in my health from food avoidance or change in diet and still struggle at 6.5 mg after 6 years.

To share your experience you might want to start another thread, new readers will not find this answer from a thread started a few days ago. Chrissie

[ParoaPrimary in reply to Zebedee44]

Thankyou for your reply.I am saddened that you are on 6.5mg after 6yrs and disappointed to note that changes in diet don't seem to have helped you. PMR is an inflammatory autoimmune condition and Prednisolone supposedly reduces inflammation to bring the condition under control.It has occurred to me that if one is eating and drinking inflammation causing food then this is making it harder for ' Pred.' to reduce the inflammation.In the short time i have reduced the foods causing inflammation i have had a big weight loss as i said previously, lower blood pressure and also swelling in my feet and legs has ' magically ' disappeared after many months.I forgot to mention the swelling in my first post.The items i have excluded are - tea,coffee,alcohol,processed meats,sugar,bread,cakes,pies etc. I have some cheese,no milk, the tea i drink is herbal, no caffeine.I do not know if decaffeinated coffee is better than that with caffeine. Notwithstanding the items i have listed one has many other diet choices.I have been making soups with many different veges in a blender, also fruit smoothies with watermelon, bananas apples, pears etc. and add celery as well.Meatwise i eat fish, chicken, stay away from processed meats and eat grass fed if possible.Main things to avoid are sugar and glutein which are in many breads,pastries etc.With the soup i make i add a little salt and pepper and can add a slice of glutein free bread and a little cheese.The soup might not have a great taste at times but if you know what went into it, veges of different colours etc.you know it is doing you good.The Amy Myers book i am using as a guide is more involved than what i have said here, but my initial weight loss,loss of leg swelling etc. is most pleasing and gives me impetus to not look at the bakery items when entering a supermarket, heading instead towards the fruit and veges.I hope what i have said is of some help, for me the weight loss from 90kg and the leg swelling gone has been very encouraging and i intend to be disciplined for some time to come to see what the outcome will be.I extend my best wishes to you and will be pleased if your current situation improves.Your comment about another thread for my comments, will have to work out how to do that being new to the forum.Bye for now, my best regards.