Alternative treatments for Polymyalgia Rheumatica

Hi, I am new here and in the process of being diagnosed with polymyalgia rheumatica (PMR) and wondered if there are any particular foods or food supplements that people would recommend to help with the inflammation? My rheumatologist said there was nothing I could do in terms of 'self help'.

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome.

This has been discussed many times, so you might like to look at the last post initially to give you some answers

healthunlocked.com/pmrgcauk...

If you any specific questions please come back and ask.

[1Purplecrow]

Hi Diana, welcome to this forum. You are going to find lots of self -care suggestions ...and the wisdom and support here is stunning!

I suspect your rheumy was referring to the fact that prednisone is the only known treatment ( so far) for PMR. That said, there are plenty of things you can do that will make your journey easier.

Most of us have learned to control prednisone weight gain by controlling white carbs. Just eat the nice bright-colored ones like green peppers, carrots, etc.

We have learned that fatigue is best managed by pacing ourselves and taking rest breaks.

We learned how to tell family and friends about this illness, especially since we usually “don’t look sick”.

Kind regards, Jerri

[HeronNS]

Many of us are horrified to learn that only pred is effective. I self diagnosed myself a few months into PMR journey but immediately rejected idea as I didn't believe I'd ever have a disease requiring this treatment. Months later when a new doctor gave me prescription for the pred trial I went to the pharmacy on my way home and took the first dose as soon as I could as by then I was in such dire straits. It seems one of two things happens for people who attempt to manage without pred, and I think the variation reflects the fact that PMR comes in more than one form. A very few people take all the anti inflammatory supplements, eat and exercise carefully, get lots of rest, avoid stress, do everything they can to get better, and after a few months they do improve. The other group, unfortunately by far the majority, does all the same things and after a few months they fill their prescription because things have only become worse and pred is their saviour. I think we should do what Purplecrow suggests to improve our health while taking pred. I agree this makes the journey easier, perhaps it even helps pred to be more effective so you need less? It would be interesting to know if anyone has studied this.

[PMRpro Ambassador]

Have you had your vit D level checked? It alone can cause PMR-like symptoms if low.

You can add oily fish and other anti-inflammatory foods to your diet and cut sugar and other white carbs - which are pro-inflammatory.

You can help things a bit - but there is no real substitute for pred.

[Hindags]

There is one new treatment, a medication called Actemra. It has been approved for treatment of GCA which often enough comes along with PMR. It has been around a while being used for rheumatoid arthritis. It is serious medication and comes with its own side effects. There is some reason to believe that it will also be approved for PMR. Small studies have proved successful and the hope is that it might come to be used as a first line treatment. Right now it seems mostly to be used when people get into trouble onPred. or run into flares trying to taper. Early results seem to suggest that it can cut treatment time much shorter though it is unclear how long it needs to be taken to keep the disease at bay after is seems to go into remission. You can search on this forum and see some reports of people's experience with Actemra also known as tocilizumab.

It is given as an infusion or as an injectible and is very expensive at present.

[Brandon47]

I've had pmr 18 months and you can help yourself. You need lots of vit d - there is not much in food and although my dr gave me some tablets, I take vit d drops which I got when I visited a holistic therapist. Get lots of sun as this is the best source. Try holistic remedies - they help. Keep active as the steroids weaken your muscles - I play golf twice a week and gardening. Swimming is good. Reduce your steroids very gradually, I started on 20mg 18 months ago and now on 5mg about to go to 4mg. Hope this is helpful.

[PMRpro Ambassador in reply to Brandon47]

"Get lots of sun as this is the best source" - only if the skin factory is still functioning well. At 70 it is making, at most, a quarter of what it made at 20.

The only way to know is to have a blood test in October (in the northern hemisphere) - which is when your blood level should be at its maximum. If you rely on sun it will just fall steadily until May - when it is at its lowest level.

[Marlenec in reply to PMRpro]

Hi PMRpro

This seems like a good excuse to have a couple of winter holidays in the sun - would that actually help?

[PMRpro Ambassador in reply to Marlenec]

If your skin factory is working, yes. I live about the same latitide as Turin - the magic cut-off point where you can make vit D from sun all year round. Doesn't alter the fact that about 80% of the locals are vit D deficient! Maybe it is the degree of suntan we all have on exposed skin.

But who needs an excuse? I'm off to Malta in a couple of weeks...

[Marlenec in reply to PMRpro]

OOOh lovely!

Thank you.

[Sandy1947]

Low carb, low sugar diet. I can’t eat night shades, drink alcohol, take magnesium, vit d, do eat dairy and oatmeal, tumeric tablets, get plenty of rest. Feel awful when I deviate. Good luck. Let us know what works.

[daworm]

I think turmeric and fish oil help...high quality not cheaper junk, and vite D3...I'll try any anti inflammatory and give it a shot to help..keep moving..

[tangocharlie]

I've been doing low carb, and adding in things which the Clever guts diet and others say should help gut health. Well it looks like now that the culpit for my flares is histamines. I've kept a very detailed diary for over 18 months now and finally seen a link which I'm testing by my GPs idea of eliminating suspect foods for a while. All the things that make me flare are also high in histamines: wine, dried fruit eg raisins, nuts, strong cheese, grapes, strawberries, yogert, fermented foods, mackerel, tinned tuna and pickles. I've also become highly sensitive to dust, cleaning products eg detergent, pets, perfume, candles, old books, glossy magazines etc. By flare I mean it's like an allergic reaction, face and neck swelling, light headed/dizzy, chest tight, sudden overwhelming tiredness,eczema on legs as well as pain in joints. Thinking about it logically, if histamines cause inflammation, on top of a disease that causes inflammation, it makes sense there's a link. Moreover, antihistamines and steroids both help dampen down any reaction. Basically I'm sticking to eating meat and two veg for a few months to see what happens, but I already feel loads better after only a week.

[PMRpro Ambassador in reply to tangocharlie]

I have a histamine problem - but it is very distinct: certain red wines result in night time very unpleasant symptoms. Which can be averted by 1 or 2 loratidine tablets ( as recommended by the immunologist). But while it makes me feel really rather rough for the best part of 24 hours, it doesn't result in a flare of PMR symptoms.

But - there is a lot to be asked about this I suspect...

[tangocharlie in reply to PMRpro]

TBH I'm not sure what aches and pains are PMR and what are the result of histamines because it all surfaced after coming off steroids. I do seem to be stiffer and more fatigued the next day after a food reaction. White wine definately triggers me, red wine does sometimes but not others so it must depend on the wine, champagne and prosecco seem OK. The worst triggers seem to be nuts, dried fruit and grapes so Chistmas cake is out. I'm having various allergy blood tests and will mention it at next rheumy appointment in Dec.I feel a bit better if I take antihistamines but it takes about 24 hours to go away. The reactions are first my face (saliva glands) neck (inlcuding lymph node at base of neck) swell up, then I feel a bit dizzy and lightheaded and my chest feels tight and dry, causing coughing. It feels worse if I lie down which is why I try not to eat or drink near bedtime, though I don't believe it is silent reflux as a doctor suggested.

[PMRpro Ambassador in reply to tangocharlie]

Has no-one suggested taking antihistamines on a permanent basis? I did at first until I got a bit bored and was much more careful about what I ate, especially away from home. Then I discovered that taking 2 tablets immediately I woke feeling rough worked brilliantly. Just have to remember to have them handy...

[tangocharlie in reply to PMRpro]

Interesting that you and I are seeing the same problems and both started young with PMR, I wonder if there's a connection. I have been taking antihistamines most days for over 18 months now, they weren't prescribed but I've told my GP several times that I rely on them. She says it's down to the rheumatologist to find out what's wrong, but the rheumy seems to be saying there are hundreds of AI diseases and we may never know what you've got. The only option he can offer seems to be to go back on steroids which I'm reluctant to do because of the side effects, particularly weight gain. I didn't tolerate trials of MTX or Aziathoprine. I guess that leaves the option of Biologics but they look scary and I'm not sure my symptoms warrant it. I've been trying to go down 'the natural route', managing diet, stress, sleep and exercise and hoping it'll all pay off. I'm going to try avoiding things high in histamines for 30 days or so and see if that helps. That means no Christmas cake/pudding or wine though, or even nut roast. meat/fresh fish and two veg, or even 5 veg for a while. Meanwhile I seem to be having more problems with the hip and pelvis area and wonder if that's arthritis starting up now too. Thanks for all your wise knowledge and advice PMRpro.

[PMRpro Ambassador in reply to tangocharlie]

Weight gain is not inevitable with steroids. I lost 35 lbs of pred-associated weight by cutting carbs drastically - and a lot of others have managed the same. To be honest - pred used properly is far less risky than biologics IMHO.

It wasn't the rheumy who said much the same to me, it was a superbly sensible immunologist! And it is true - it is looking for the proverbial needle in a haystack. They might find it - but it is more likely they won't. Antihistamines and the right dose of pred is likely to cover most options - making the PMR livable with too.

[Silverfoxylady]

My mother who is 82 has been suffering withPMR for about 6 years . She has been up and down various doses of Pred trying to get off them due to bad side effects . Skin rashes , sore eyes , terrible headaches , she has very high blood pressure as well regardless of Pred. Swelling of feet , joint pain, prob more I can't remember.

Not sure if some of these are just symtons of PMR , it's hard to discern now as it's been so long thar she's suffered pain .

So really I'm just trying to find out if there is anything else she can do or just help her relieve the pain. At the moment it seems that it's the constant severe headache that's wearing her down. The Co codamal don't touch the sides , she takes at least 6 a day .

Do antihistamine s help , and worth trying ? Any other advice would be great m I think she is taking 10 mg of Pred ATM.

[PMRpro Ambassador in reply to Silverfoxylady]

This is a very old post - if you would like more replies do please post a new thread with what you have said.

My personal suggestion would be that your mother needs to get a second opinion from a good rheumatologist because by the sound of things it is not necessarily "just" PMR. If it is then she isn't on enough pred to manage the symptoms. There isn't really any other option for management of PMR - and no, antihistamines aren't relevant here.

Whereabouts are you?

[piglette in reply to Silverfoxylady]

If it is PMR she has co codamol will have no effect. They may help other ailments of course. If the pain is from PMR she will need to increase her dose of pred. She needs to talk to her doctor.

[Hidden in reply to piglette]

Hi piglette thee member started a new thread with same question.

[piglette in reply to Hidden]

Thanks I think my computer seems to take ages to pick up a link.

[Hidden in reply to piglette]

No probs it called pmr help