Foods to help inflammation of PMR

Grrr! Just wrote a longish post and the internet connect went down - guess who hadn't saved it just in case! That'll teach me!

Welcome Paulette! Sorry about the calcium tabs - have you tried soluble ones? They can be got - ask the pharmacist. Are you sure it was the calcium if you have problems with AA? And pred isn't that innocent for tummies either.

Fatigue is a normal aspect of all autoimmune diseases - google the spoon theory to read Christine Miseriando's take about living with a chronic disease. It will get better but it might take some time. Resting and pacing are the answers. And stop before you've reached the end of your energy. It isn't giving in, it's adapting.

Ask any questions you may have, have a moan and scream if you need to, someone will hear and provide an answer and sympathy. For a "real virtual support group" the pmr and gca northeast support group site has lots of info and a link to another forum where we have a laugh as well as getting support - google it or click on the red print "Polymyalgia and GCA" bit at the top of this page where there are pinned topics at the top of the list with other useful web addresses.

Have you had a dexa scan? That is essential to know of you even need AA - I didn't and 4 years on my bone density is unchanged despite being on 10mg or over for a lot of the time. Only about half of patients on pred lose bone density - it isn't a given.

Eileen

Hi Eileen, thank you for your response. When I first started the Pred my mobility problems improved within 2 days which is why GP pinned the label PMR on me, then I was put on calceos chewable lozenges, for the calcium, only thing was they had essential oils of citrus in them and citrus is a migraine trigger for me, so after getting 6/7 visual disturbances a day I read the ingredients on the calceos leaflet and discovered where the problem was coming from, meanwhile I had been sent to the local hospital as there was the GCA danger to take into consideration, I had a temporal artery biopsy which came back negative, then I was put onto adcal tabs for calcium, I can't begin to describe the effect they had, enough to say I had a close relationship with the loo for a week and fellt totally exhausted, so was taken off them and left on the AA, but they make me ill for at least two days after I have taken it and feel like I have been run over by a steam roller. Im pleased to hear I'm not the only one feeling so tired and have no energy. I am off work for the moment but hope to go back in a couple fo weeks Dr allowing. Havent had a dexa scan, hadnt heard of it till you mentioned it. Will mention it to my Dr when I see her in a couple of weeks. Its so nice to have others to talk to who understand this condition. Thank you , I shall stay in touch. Meanwhile I have to look to get more calcium into my diet!

Paulette

Hi everyone,

Thank you for your anti-inflamatory diet advice. I just wanted to share with you my experience. I went on a VEGAN, NON-WHEAT AND DAIRY FREE DIET and drank Green Tea in the mornings for two weeks and felt amazing during that time. I was pain free for the first time in over a year and my rheum put it down to getting rid of toxins in the body.

I couldn't keep the vegan diet up but have kept off wheat and dairy as much as I can. I'm still in pain especially in the mornings and am on 3mg of pred per day. Thank you and I would love to hear any other nutrition stories. I will start adding more turmeric to my foods. Keep looking and finding the answers.

Jackie

There is a paper about using that sort of diet for RA joint pain and it was very successful in about half the patients - so yes, it is officially acknowledged as it was a proper monitored peer-reviewed study in a reputable journal. They found - like you - that the diet that worked was so extreme very few people could stick to it for long. As soon as even small amounts of meat or dairy were reintroduced the joint pain returned (can't remember about fish). That said - a friend in the southeast of England has been vegan for several years and also excludes wheat and she doesn't find her diet that extreme and eats well.

I'm afraid in my book a phrase like "getting rid of toxins" comes under "wibble" so I'm surprised a rheumy used it - but hey-ho!

Eileen

Hello, I am new to this condition, and I am so pleased to have found this forum and the invaluable advice.

My doctor is convinced that I have this condition, although I haven't had it confirmed yet. I had my blood test yesterday and I go back to see him next Tuesday.

I thought that changing my diet would be a good thing, and you have all confirmed this.

I feel as if I have severe toothache in my leg muscles and they are so stiff, sometimes keeping me awake all night. It has now started in my right arm. My legs sometimes feel as if they are not going to support me. Going up and down stairs is chronic and I don't have to sit still very long before I seize up. Suffering fatigue too. Does this sound familiar?

What causes it does anyone know? My doctor thinks in my case it could be stress as I have had a bad year to put it mildly.

I also suffer OLP but it is dormant at the mo.

Eating more curries is going to please my husband!

Thank you all for your posts and advice

Hello Elaine and welcome though sorry that you've had to find yourself here.

Unfortunately, no-one knows the cause of PMR at present, but your Dr may be right in suspecting that your stress may have been a contributory factor. Many people have mentioned a stressful period before their diagnosis, but others have blamed statins, vaccination, having flu, etc.

Yes, your symptoms sound all too familiar. As for going up and down stairs in my pre-diagnosis days, that was just a rare occurrence when the ambulance called to take me for appointments - the rest of the time I was bedbound with the pain and stiffness. Fatigue is also one of the very common symptoms, and some people complain of feeling feverish with night-time sweats - I used to wake up soaking wet.

Good luck with your test results on Tuesday but be aware that some sufferers never have raised blood test markers but can still have PMR.

MrsO

With respect to anti-inflammatory foods, I have been taking a lot of turmeric (curcumin) drops for the last three weeks or so. My pain has been somewhat dimninshed over this time, particularly in my quadricep area (top of upper leg) I can now lift my feet off the ground while sitting in a chair, which was nearly impossible previously. I can't difinitively say the improvement is due to turmeric, as at the same time as starting trumeric, I also cut back on alcohol and began increasing oily fish intake. I do think the turmeric is having some effect however, since I bumped my wrist a week or so ago, and it bruised much more easlly than it would have in the past, and easy bruising is noted as a possible side effect of turmeric.

I also at about the same time stopped taking my hypertension meds (after consulting GP) which were a combo of angiotensin II blocker and hydrchlorothorazide (diuretic). My BP has been normal since. THis could also be a result of one of , or all of the following: turmeric, oily fish, less alcohol. All anecdotal, but I thought I'd mention it.

Also, I am not taking pred as I have no definitive diagnosis, so I am taking ibuprofen 400mg most days (taken at about 1 -2am, which seems to help considerably.

Hi b17941

I had plenty of turmeric in the form of the herb added to suitable meals. I also had loads of oily fish (about 3 times a week) and I know this proved successful as if I missed it for a week or so I would immediately notice increased stiffness and pain.

I'm surprised Ibuprofen works for you as it didn't help me. Be very careful with it though, as long-term use can affect your kidneys and liver.

Safer to have a diagnosis and be on treatment if you do in fact have PMR, as people with PMR and not on steroids to control the inflammation are at greater risk of succumbing to the linked condition, GCA, which untreated can lead to loss of sight. I spent a year undiagnosed and therefore untreated, with several months unable to get out of bed. I recovered spontaneously within a year but it was short-lived as GCA arrived on the scene and I was then diagnosed with both PMR and GCA.

Good luck.

MrsO

Thank you. Oh yes I get night time sweats, I hadn't linked that, but thought it odd they started up again. I was put on HRT to control night sweats and that worked for years, but recently the night sweats have started up again even though I am still on HRT. I take an Omega 3 supplement and have done for a long time and have salmon once a week. So I don't understand why that isn't working for me. Ibuprofen did nothing for me either. My mum had GCA (sadly passed away last year). May be there is a link then if PMR and GCA are linked.

II was diagnosed with PMR-GCA in Oct. while on tour in Australia. I have tapered from 60mg to 30mg of

prednisone. I guess the high dose was to combat vision loss in my right eye for 20 minutes at a time and I had also lost 20lbs in 4 weeks.

Since starting prednisone, the GCA symptoms have disappeared and PMR symptoms have only occurred two times. Both of these times was after a day of binging on sugary treats. The events were a birthday party and a belated Christmas party.

I will tell you that I have been following the dietary recommendations contained in the appendix of a book written by Gary Taubes called "Why We Get Fat : and what to do about it". It is an Atkins diet and I am limiting

myself to 50mg of carbs a day. For your information a "healthy" glass of orange juice only contains 28mg of sugar. I see my rheumatologist Monday so I will be asking this and other questions and I will post his answers.

Regards

I certainly have lost a lot of weight since restricting my carb intake to well under 100g (cc23145 - I think you mean grammes of carb don't you?) and most of the time it is about 50-60g.

The "BIG" dietary thing in the UK at the moment is sugar - or not depending on how you look at it! From a physiological point of view, the logical way of dealing with/avoiding developing pre-diabets is to keep the sugar intake down low. Why eat more carb which means you need more insulin? Less carb, less insulin (or other antidiabetic meds).

There is an excellent website called Diabetic Mediterranean Diet Blog by a doctor called Steve Parker - lots of excellent info.

The reason that I logged on to this site was to find out if anyone else has reduced PMR pain by cutting down on carbs because It seems to work that way for me so far. When I returned to the Atkins diet, I slept through the nite, I did not need to wake up three or four times to void my bladder and my rapid weight loss ceased.

The book "why we get fat" is the layman' version of the book titled "Good Calories, Bad Calories" and it

The perversion of dietary "science" that took place in the 1960's. the book discusses things like "insulin resistance" and "metabolic syndrome" causes. An English man named Banting was the inventor of the Atkins type diet in 1850.

Let me preface the following anecdote by saying that I have been on an Atkins like diet for 1.5 years prior to the PMR- problem and had lost 35lbs.

My wife and I cruised from Hawaii to Sidney and I started eating the desserts, other carbs and also drinking the fruit juices. I had been experiencing aches in both temples and hazy vision about two weeks before the cruise but no PMR symptoms. Besides food, I even tried to keep up in the drinking department with the Ozzie

friends we made (It was a lost cause). About 9 days into the cruise I developed PMR and 9 days later I suffered vision loss in my right eye 8 times in 4 days.

We are now tapering the steroids. I have controlled my weight by going back on Atkins. The only time that I have experienced PMR symptoms is when I bing on sweets. The last example of a binge was two lemon bar pastries, a cup of semi-sweet chocolate chips and a bowl of carmel ice cream in one day.

Dear fifties girl. Thank you so much for your information and inspiration. And thanks too, all who replied with encouragement, ideas, experiences and good humour! Perhaps I needed that most of all.

I've slipped lately into a 'couldn't care less' kind of attitude. The weakness that comes with this disease leaves me feeling useless. So much I want to do. So little I can do, and the little I do requires so much effort!

So, I slipped into an old pattern of eating cereal. I love Cornflakes, especially Crunchy Nut Cornflakes, and in the past three days I've eaten a lot of 'em! :D Very dangerous for me, as I also have Diabetes. But I allowed my physical weakness to bring my spirits low. I do feel very encouraged by you all though. Thanks again I have made a shopping list.

One question, one thing that surprised me, is the dosage of Prednisolone you are taking. It seems so high. I began at 40mg two years ago. Got down to 20 quite quickly. Felt good at 15. My GP wants me below 5mg. I can't do it. I'm on 5mg now, and without exaggeration, I feel as if I'm dying. Perhaps I should be braver, or more assertive and ask him to increase? After all, I've already developed Diabetes, and I already had CHD.

Thanks again Ladies. Are we all women? Do men get PMR? Ah I see now that I am ignorant of this condition. More research needed More questions

XX

"one thing that surprised me, is the dosage of Prednisolone you are taking. It seems so high. I began at 40mg two years ago. Got down to 20 quite quickly. Felt good at 15."

If you have PMR I don't understand what you mean by this comment at all - it doesn't make sense. 15mg is the recommended starting dose for PMR, 20 in exceptional cases, and anything higher is felt to put the patient at risk of longer term problems from too much total steroid dose and make reducing more difficult. However, doses of 40mg or more are used initially if you have GCA - they have to be to avoid loss of vision. And if you feel as ill as it sounds on 5mg there isn't a lot of point taking it - it's a common mistake by doctors to think it is better to have patients on a low dose to avoid side-effects but all that happens is that they get no benefits at all.

It is possible that this is what has happened to you - how do you reduce? Any reduction should never be more than 10% of the current dose - most top experts now agree on that at least. Many of us have had success by keeping our reductions even lower. I never got below 9mg in 4 years, a lot of the time was above that. Since I changed to doing each 1mg drop over a period of 6 or 7 weeks I have got down to 5mg and have had no problems at all. I would do it in half mg steps but I can't cut the tablets because of their special coating. A specialist who has been persuaded to try something similar has said, sounding surprised, "It works!"

But first you have to have the inflammation under control and as few symptoms as possible. You shouldn't feel weak or ill to the extent you feel you need to say "I'm dying". You may have other problems, you may have done so little exercise your muscles have lost tone but the PMR itself shouldn't make you feel that ill.

About 3 times as many women as men develop PMR but men tend to suffer less and recover quicker for some reason, it isn't known why.

If you want to do research about PMR you will get a lot of information following the links in this post at the top of this forum:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

Eileen

Thank you Eileen.

My dosage was reduced quickly, within the first few months of diagnosis. 40/20/15/10. Within three months. Then decreasing by 1 mg each month. I go to 4mg, my GP reluctantly agreed to keep me at 5mg.

When reading the dietary thread in the PMR forum, lots of people stated higher doses that 5mg of Prednisolone. That was my surprise. My GP would like me off it altogether and I can't imagine how.

However, this forum, this web site patient.info has given me more information about PMR than I've known before, and it's good to learn and share with people who understand.

I think that exercise and pacing may be keys. I work very hard. I am a carer, and care for four disabled/sick and/or elderly relatives. And I have other family commitments. Things have to change!

My diet is usually excellent, as I have Diabetes and I'm in good control of that, apart from a recent slip, when I got low in spirits. But there are certain foods and supplements mentioned here that I will certainly try

I've also heard mention of 'flare ups' and that's a possibility. And I'm attempting to understand the varying symptoms of each disease, where they overlap, and how I can treat them.

Thank you for your response, it's very much appreciated.