Long term

[PMRnewbie]

Does anyone take Rayos for their maintenance of PRM? Also any thoughts on eating an anti- inflammatory diet. Trying to wade through all the info that I have found and come up with an eating plan that helps me to stay as pain free as possible. So far I've noticed that sugar and gluten are big triggers for me. Thanks in advance for the feed back!!

[magmapearl3]

There are a few people on this site who have posted before on this subject so I'm sure you'll receive some helpful replies. Good luck on being pro active with your diet.

[MollyBloom]

As a ceoliac I was already fully gluten free prior to PMR/GCA and I notice that with the Pred, my pain levels seem to be considerably less than the descriptions I see from many people on here. I have aches but no pain now as such. However I'm still on 45mg so that may be why, except I never had the pain to a severe degree. I have also switched to sugar alternatives and tried to reduce sugar and carbs in my diet. Gluten is in so much food you have to be really careful but probably not as careful as I would. It is for example in many stock cubes, ready made pate, crisps, most supermarket packaged pulses and so on.

For gluten free cooking ideas, the new Nigella cookery book, Simply Nigella has a lot of GF and healthy eating recipes in it, which I'm enjoying. She puts a lot of her recipes online too. When baking treats (which there's going to be a lot of this week!) my fave current cookbooks are:

Sugar Free Snacks and Treats by Ryland Peters & Small

The gluten free baker by Hannah Miles

Baking is different with GF flour. If you use an ordinary recipe use a bit less flour and at least one extra egg and maybe a bit more liquid. Also add a gluten replacer such as Xanthan Gum to stop things crumbling apart and a few drops of glycerine in bakes to soften them. Also check out Ceoiliac UK website for lots of info.

But overall I'm just trying to eat less carbs due to weight gain potential. This is all so complicated,eh.

Good Luck!

[PMRpro Ambassador in reply to MollyBloom]

I think everyone is different in terms of pain-levels but if you are still at 45mg then PMR pain is unlikely to be a factor since PMR pain is characteristically managed by a pred dose well below 15mg. That is the usual recommended starting dose and if you stay there it will almost always control the inflammation within a month. Many people are never totally pain-free though - so what they are really looking for is the lowest dose of pred that manages the pain and stiffness as well as that starting dose did. Which can be a bit confusing for people with GCA and PMR symptoms - because eventually they also have to find that low dose if the PMR symptoms return. Some are lucky - PMR never figures!

[MollyBloom in reply to PMRpro]

Thank you PMRPro, yes the GCA is the much bigger problem for me but it is confusing to know which is which sometimes and what are side effects of the Pred. So I'm sure finding the lowest dose will be tricky. As desperate as I am to reduce I'm taking it v slowly - I should have dropped to 40 today but judging by what people have said on this forum, it seemed more sensible to wait until Saturday when Christmas is done as my grown up kids are coming home this evening for the week and I want to enjoy my time with them.

It's hard to say if the gluten freeness makes any difference, just an observation in terms of my pain, but it may not be relevant of course.

How on earth people managed these illnesses in the past without all your helpful advice I'll never know!

[PMRpro Ambassador]

I am on Rayos (Lodotra in Europe) - I had horrendous side effects with Medrol (methyl prednisolone) which is the only other corticosteroid available here in Italy so my GP suggested we tried Lodotra which is just a form of prednisone. It is approved for RA in most countries but not for PMR except (I think) in Germany and the USA so it is off-label use for me. I find it excellent - I have lost a lot of weight and got down to 5mg - but it is only a different formulation that you take at night and it doesn't release until early morning and really does improve morning stiffness. Someone in the USA said they found it didn't manage their pain. It is only available in the UK with private prescription so I only know of 2 people who have used it there - one stopped taking it because of other health problems being found.

I avoid wheat - gluten per se is not a problem but I develop a nasty itchy rash with wheat but not with rye, spelt and kamut which are all easily available here. I was eating gluten-free when I lived in the UK before the PMR started so gluten doesn't make any difference to me. I tried omitting the nightshade veggies, have been alcohol-free and various other things-free and it made no difference. One lady on here consciously ate an anti-inflammatory diet in that she included turmeric and garlic and ate oily fish 3 times a week amongst other things - and when she'd slipped in terms of quantity for any reason she felt the PMR more. I also avoid sugar (a very low carb diet) but I don't think it makes a big difference - I eat cake now and again and dark chocolate!

[polkadotcom]

Yes, there is one member here who takes Lodotra (the UK version) and hopefully she will be around later.

I've tried to live with an anti-inflammatory diet (there are many around) and failed miserably. I do have other conditions which impact on my diet, but maybe I'll try again in the New Year.

[Jennykk]

I've found organic cider vinegar ( from the mother) helps. I do notice when I forget.! Good luck.

[PMRnewbie in reply to Jennykk]

I use mothers apple cider vinegar and too feel the difference if I miss drinking it. I add it ground ginger, fresh lemon juice and stevia for a little sweetness to a gallon of water at a time so I always so handy in the frig. It keeps me hydrated, the ginger helps my stomach stay settled, and I can feel the difference. My sister is visiting for the holidays and loves it, she has RA and can feel the difference after drinking it over the last week.

[autrainriver]

Research does not support changing your diet has any effect on PMR. However, there are many articles and testimonials that reducing or eliminating anti-inflammatory foods does in fact effect various auto-immune diseases. I believe what you put into your body will have an effect on everything regardless of whether it directly impacts the PMR. Some people will practice an elimination diet, which is usually done under the guidance of a nutritionist. This is a very strict protocol and when certain foods are reintroduced you determine if they work for you. I am completing week 3 of a very structured self-guided anti-inflammatory diet called the Whole30. You can buy the book on Amazon and do some research and decide if that would be an approach for you. The book addresses auto-immune diseases and gets one started with support and recipes. It takes discipline and will to eliminate sugar, grains, legumes, gluten, fried food, and nightshades. However there is a whole world of great things to eat and meals to cook and when you feel better you become more motivated to continue. I worked into it by weaning down the prior 4 weeks. Another excellent source is Practical Paleo which also lays out an anti-inflammatory diet and has many excellent recipes. I am newly diagnosed but not definitively because my symptoms were atypical, but the pain, stiffness and response to prednisone fits the profile. Upcoming appointment in mid-January at Mayo will hopefully rule out some things that the rural community which I live did not provide expertise. Started on 15mg and at one month plan to go to 12.5. Following the suggestions of the many supporters on this site was well as excellent literature I found online and also through this forum. If you can find someone to join you in your food journey it will be easier and the support for one another is excellent motivation. Good luck and happy holidays to everyone on this forum.

[PMRnewbie]

Thank you so much, I really trying hard to find a diet to help I have RA also.

[Nap1]

Thank you. Will order the book today. I eat very low carbs since prednisone has raised my blood sugar. Trying to stay off still another medicine. What is the ratio of water,ginger,stevia,apple cider vinegar. Can't use lemon I take a proton pump inhibitor for gerd...I too went to mayo. Are you in the US?

[PMRnewbie]

One gallon of water, 4 oz vinegar, 1/2 cup stevia (more or less to your taste for sweetness) and a teaspoon of ginger. You can also add essential oils for flavor if you like. Yes I am in the US. Concerned about my sugars also, check once a week to keep track if they are going up because I have never had a problem in the past. Being a nurse I know how hard Prednisone can be on a body, but at this point there really isn't another option, I can at least function without so much pain with it. Could barely roll over in bed without help by the time I started taking it. The Prednisone makes me want to eat to much, sipping this all during the day seems to help curb some of that too.