Holistic ways to manage PMR

Hello, I have been recently diagnosed with PMR, which I have been suffering from since I had Covid last December. After my second vaccine my symptoms seemed to settle down until I had an upper respiratory virus in July and the inflammation just took over. I was finally put on prednisone by my GP the end of September after a total hip replacement in August. The prednisone seemed to settle my symptoms again while on 20-15 mg. I finally had an appointment with a rheumatologist in early November. The recommendation was prednisone 20 mg which I have put off taking due to cataract surgery and receiving my booster shot. I really do no want to be on prednisone but it seems like the only alternative. I am looking for holistic ways to manage, I just turned 70 in June.

[PMRpro Ambassador]

You will find ways of helping that you might call holistic - but none of them will fully relieve the symptoms and won't reduce the inflammation. It isn't a simple case of pred bad, no pred good. By leaving the inflammation unmanaged it also creates damage to tissues and increase the risk of PMR progressing to become GCA - where you then are faced with the options of taking far higher doses of pred or risking irreversible loss of vision and once one eye is gone, there is a 50/50 likelihood of losing sight in the other eye within a few weeks. Typical long term PMR doses are under 10mg, often well under, but GCA doses start at 80mg depending on the severity of the visual symptoms. It isn't theoretical - we have several members with at least some visual loss and get 4 or 5 reports per year of total loss of sight.

Perhaps the greatest role of holistic approaches is in managing the adverse effects of pred - I have no identifiable longterm effects after over 12 years of pred although at nearly 70 I was told the other day that I do have the first signs of cataracts. I also had 5 years of PMR without pred because I wasn't diagnosed. PMR doesn't necessarily run its course in the 2 years so many doctors like to claim. Nothing would persuade me to go back to the pre-pred days.

[Hidden in reply to PMRpro]

My concern is weight gain, which I have already put on 30 extra pounds since my activity level is so low.

[PMRpro Ambassador in reply to Hidden]

Then as SJane has already said, the holistic answer to that is cut your carbs - drastically. Especially processed carbs and added sugar. And limit fruit and root veg. Obviously it is best to avoid the weight gain by doing it from the start but it is perfectly possible to lose weight while on pred and many of us here have done so. Believe me - the inactivity associated with unmanaged PMR lets the weight go on too - I gained weight with the PMR but no more with pred, it just redistributed itself, until I was switched to a different form of pred call methyl prednisolone when I again gained weight. I switched back to prednisone and lost 35lbs over the following 18 months but had already started to lose weight by cutting carbs. I have to be very drastic about the level of carbs I can eat, others are luckier.

I find this website particularly helpful in learning the principles:

dietdoctor.com/low-carb/foods

You don't have to join anything - learn what to eat and not eat and adapt your usual recipes.

Cutting processed foods and cooking from scratch also reduces your salt intake - and that also helps with fluid retention which can be a problem with pred.

[Lauterbach in reply to PMRpro]

Have just looked at that guide and Yes, it is really useful. Many thanks

[Hidden in reply to Lauterbach]

Yes I have. Thank you!

[Sophiestree in reply to Hidden]

I have an underactive thryoid that was diagnosed in my early 20s and so weight gain is permanently on my mind, even though I, by that time was not overweight. The minute I knew I was going to be on steroids, I immediately went on a very strict diet. Cut all refined carbs, no bread, pasta, rice, potatoes and no sugar or salt (although I did buy the Lo-Salt option as I miss salt). I do have the occasional cheese or ginger oat cake if I am really craving carbs.It must have worked as I in fact I have lost weight (which has always been really hard with the thyroid issues) , eat a lot, and do not have a moon face.

The one thing I have learnt though, is to always have things to hand, in the fridge, that you can eat when you are hungry, rather than going for the stuff you shouldn't be eating.

I did actually remove most of those things from my fridge, freezer and cupboards so they weren't even there to tempt me. I have a great weekly delivery box of veg and some fruit which makes me cook. It's tough at first, but you soon get used to it.

[SheffieldJane]

None of us want to take Prednisalone. Unfortunately, nothing else seems to deal with the harmful inflammation at present. Holistic ways of supporting the organism can only help. For instance a strict low carb diet from the outset can actually avoid the voracious appetite, weight gain and glucose spikes.

[Hidden in reply to SheffieldJane]

Thank you, I will try anything at this point. It’s been over 20 years since I was first diagnosed with autoimmune. This year has been awful.

[PMRCanada]

I too developed PMR after a nasty upper respiratory infection (and a number of life changing stressors)… just too much for my immune system I suspect. This happened 4 years ago, so long before Covid.

From the start when I began taking steroids I adopted a low carb/sugar/salt diet and lost 30 pounds, of which 25 have stayed off. I did not eliminate these altogether, just lowered them with the help of my daughter who is a nutritionist (she did up meal plans that are very helpful, and I’ve stuck with my favourites).

As others have mentioned, keeping the inflammation in check is key to avoiding GCA, but also allows for greater mobility/physical activity. I enjoy deep water exercises 2-3 times per week, even going in the pool with my 1.5 year old twin grandsons with their mom or dad weekly, for the parent and tot class. Pred helps me live a life that is close to how it used to be, and that in turn, positively impacts my mental health too.

Early months yet for you….acceptance and adjustments help. We are here to support you along the way. Post questions or concerns anytime. You are not alone.

[Hidden in reply to PMRCanada]

Thank you for your kind words and advice. As I just begin this journey I know I am being supported by everyone.