New to PMR GCA - Looking for diet-related treatment

[BeansHB]

Hi folks. I am so happy to have found this site! I was just diagnosed yesterday and put on prednisone. This is my second diagnosed autoimmune disease - I was diagnosed with SLE (Lupus) in 2009. I was able to get all my Lupus symptoms under control, resulting in almost normal labs, through stress reduction and diet (starting with an elimination diet that ended with a gluten, dairy, and soy-free diet). Over time, I was able to add dairy and soy back in, but never gluten (actually wheat). When I first had PMR symptoms, I thought it was a Lupus flare up, so went back on the elimination diet, but it didn't have any impact on the pain. I've continued to eat a diet free from dairy, soy, wheat and other gluten products, caffeine, alcohol, most legumes, and sugar. I've also been taking 10,000gm of fish oil, several detoxifying products (dulse, spirulina, chlorella, etc) along with a handful of other supplements. I'm wondering if anyone here has had success with a specific diet, or additional supplements, that have allowed them to reduce or even eliminate the use of prednisone. Any and all thoughts would be appreciated.

[HeronNS]

Sadly the answer is really "no". Some very few people claim success but one never knows whether they had the kind of PMR we mostly have here, which hangs about for a few years, or something more shortlived anyway. PMR just describes the symptoms, it's not really a defined disease and there seem to be different versions. It's also possible that the apparently successful people were on their way to remission anyway, which is what happens eventually in nearly all cases. PMR comes and goes in its own sweet time and all we can do is control the symptoms.

That being said many of us have found things like the kind of dietary changes you have made can help. Pacing is important - exercise by all means but do not overexert yourself, that kind of thing, as you adapt to this new state of affairs. The best thing we can do for ourselves, I think, is to care for ourselves, treat ourselves gently, and try to live as healthily as possible.

[PMRpro Ambassador]

I have come across a few people who claim to have dealt with PMR with diet - but all seemed to be still in pain and disabled. The performanace of shopping and preparing usually sounded unattainable for someone wth PMR. And I know what unmanaged PMR is like, I had 5 years of it, not from choice I assure you.

You can't really tell how effective diet may be, PMR goes into remission sooner or later for 95% of patients in between 1 (very rare) and maybe 6 years. A few of us take longer. Dietary and lifestyle changes will probably help but they won't replace pred for a low pain life in the meantime.

[GOOD_GRIEF]

Hi Beans:

Not being a medical person, I have reservations about saying this. But I'm going to anyway.

Check out those supplements with a pharmacist and make sure they won't interfere with or conflict with Pred.

Don't just think you know whether they're OK. Know that you know they're OK.

Off my soapbox now and wishing you all the best....

[BeansHB in reply to GOOD_GRIEF]

Thanks for the concern Good_Grief. I haven't spoken with my pharmacist, but my doctor knows what I'm taking and gave me the go ahead. She's fine with what I'm taking but doesn't seem to give much credence to diet or supplements as ways to combat symptoms. That's why I was asking here.

[PMRpro Ambassador in reply to BeansHB]

And the average doctor doesn't know all they should about interactions. Just saying.

[BeansHB in reply to PMRpro]

Good point. I'll double check with the pharmacist.

[PMRCanada]

I asked the same question when I was diagnosed with PMR last May. Even diet and lifestyle changes made with the guidance of my daughter, a certified nutritionist, did not result in the significant reduction of inflammation and symptoms, like pred did.

The lifestyle and diet changes I made did result in weight loss (needed to do this due to knee issues and high bp), better sleep, and ability to partake in exercise (deep water) that keeps my muscles active but not fatigued. It also helps combat pred side effects of weight gain and water retention/increased bp, diabetes. I was so afraid of the side effects and in turn this provided me with motivation to stick with a low carb/sugar/salt diet. I have not eliminated any food groups, making it more easy for me to stick to.

I will say it is important to take calcium and vitamin D while on pred. I take both supplements along with omega 3, turmeric/curcumin and glucosamine (for knees).

I have learned the better I eat, the better I feel.

Good luck on your journey. Stick with these folks...they have loads of life experience and knowledge.

[HeronNS in reply to PMRCanada]

Is she a dietitian or a nutritionist? dietitians.ca/Your-Health/F...

Just curious. My daughter is a dietitian and did give me good advice how to control my blood sugar. I don't think it crossed the minds of either of us that diet could manage my PMR symptoms.

[PMRCanada in reply to HeronNS]

She is a CNP (certified nutritional practitioner), not a dietitian. We did not expect that diet and supplements could control PMR symptoms, but we did focus on foods/supplements that are known to help with inflammation, control blood sugar, lower blood pressure, and help with weight loss (my specific goals). I started with a change in diet before I was diagnosed with PMR, and had some success with weight loss and cutting my bp meds in half.

It is when I was diagnosed and prescribed pred that I truly understood how this powerful medication worked to relieve the inflammation. My GP, as well as the folks on here explained the role and effectiveness of pred on PMR.

Nice that we have daughters that can support us.

[HeronNS in reply to PMRCanada]

Yes it is. But I had to educate mine on Vitamin K2.

[PMRinsdca]

Hi BeansHB

I have tried a very strict anti-inflammatory diet similar to what you've described. I did it for 3 months and it was exhausting and made me very cranky! I was making everything from scratch, including my own gluten-free crackers!

I can't say that I felt a whole lot better physically but it definitely hurt my social life! I decided to not be so strict with my diet but try to limit carbs, no dairy, no red meat and limit grains. It's a tough balance but I also want to enjoy my life, so I enjoy a little of what I want, especially when out with friends.

The flip side to this "diet theory cure" is that I will sometimes feel guilty and blame myself for feeling crappy because of the idea that I can somehow control the PMR through my diet and that I should try harder! (Even though when I eat perfectly and no alcohol I feel wiped out too.) I'm glad to read the other comments here!

My rheumatologist told me that studies have shown that people who take supplements (a daily vitamin) don't live any longer than those that don't. (I was taking a lot of diff supplements.) Still trying tumeric and def taking calcium.

Good luck to you on this journey and thanks to the others who commented. I feel better!

[BeansHB in reply to PMRinsdca]

Hi PMRinsdca,

Thanks so much for your reply! I am happy to see that someone else has tried to make a difference with diet. I know most folks think that this is too extreme, but diet worked for me when I was trying to manage Lupus, so I was hopeful it might work with PMR. It IS tough to cook (I, too, make my own seed crackers), and eat this way. It's been 3 months since I began the elimination diet, and still no change in symptoms for me. It's good to hear that you (as well as one other person who responded to my post) also didn't notice much change. While it's disappointing on one level, it's a bit of a relief on another. I no longer have to feel like "if I just do things right, I won't be in pain." I hate the idea of being on prednisone for an extended period of time, but if that's what will keep my eyesight safe, as well as keep me out of pain, I'll continue with it, and perhaps be a more flexible in what I eat. Thank again for your response. It was really very helpful!

[HeronNS in reply to PMRinsdca]

I had the same attitude about exercise before I was diagnosed, thinking that if I just did a little bit more, or tried this new technique or whatever I would get better. I practically crippled myself trying to do something I saw on US public television fundraising - "classical stretch".

[Grants148]

Thankyou Heron,l have deleted the posts referring to ‘scams’.