Update on my diagnosis.

[Smallstepsforward]

Hi all, I’ve been very grateful for your support since June. I thought I’d give an update on my condition. After many scans and tests, my new rheumatologist thinks that I have PMR after all. I’m glad we ruled everything else out - including cancer and vasculitis - as I can crack on and deal with getting better.

That said, early last week I noticed a significant drop in my pain levels and my head cleared. I’d say the head clearing is to do with the effects of the prednisone wearing off (I took my final dose on 29/10 after a rapid taper from 14mg over 4 weeks). The drip in pain levels are harder to explain. It could be my supplement protocol, anti inflam diet (although I don’t stick to that rigidly), breathwork, sleep, my relatively young age, twice daily walks? Who knows, all I know is that the pain has reduced alot.

I met with the rheumatologist on Thursday who advised holding off on medication as my pain was low. He was suggesting methotrexate as I don’t tolerate steroids. He said to continue as I am and we will review when I see him in December.

At the moment I’m taking soluble paracetamol for the pain (I have pain in my left hip and pain in my shoulders, upper back and neck) and I apply tiger balm to the painful areas. I walk twice a day and will start Pilates again. Daily breathwork seems to work too. In terms of supplements I take boswellia resin, high strength omega 3 oils, bromelain, megamag calmeze, vit D3 with K2 and ultrainflamX. I am also taking a course of adreset and Siberian gingseng and liquorice for my adrenal glands post steroids. I also take symprove and probiotics for Candida as that was one of the side effects of steroids.

I am doing a masters of science in nutrition so I have researched all of the supplements I take. T research is still relatively small in the PMR area but I do know that two ILs are the main drivers - my protocol is aiming to balance out my anti anc pro inflammatory cytokines. So far, it seems to be working for me. I’ll keep you updated!

[DorsetLady PMRGCAuk volunteer]

Good news you finally have diagnosis, and not as serious as initially thought.

[SheffieldJane]

Fingers crossed for you! Don’t be afraid to come back. Autoimmune diseases are tricky. Your studies will be a really relevant on-going guide towards well being I am sure.

[Smallstepsforward in reply to SheffieldJane]

Oh I’m not leaving just yet! I am still in pain but thank goodness it’s not debilitating like it has been. A weekend in wales watching the rugby hasn’t helped the pain levels today but we all have to live a little don’t we?! I have to complete a 15000 word dissertation for my masters. I am thinking I’ll do it on nutritional and lifestyle interventions for polymyalgia concentrating on intervening in the mechanisms of IL 1 and IL 6.

[PMRpro Ambassador in reply to Smallstepsforward]

There is only a weak association of IL-1 and PMR as far as I know - mainly IL-6 - but if you can boost IL-10 there seems to be a possible positive link there. Cytokines aren't always pro-inflammatory ...

[Smallstepsforward]

Yes I know that. It’s a matter of lowering the pro inflammatory and raising the anti inflammatory cytokines. Not an easy process! Also resetting my body’s immune response to switch on and off normally again. Again not an easy ask but as I’m so sensitive to medication, it’s my only route

[Smallstepsforward]

I’ve had many scans and tests since October and they’ve settled on PMR. The pet ct scan showed PMR type inflammation. My crp levels are down. I have no idea why I’m not in so much pain. The rheumatologist thinks that it could be a reaction to a covid 19 infection I had which was exacerbated by the two vaccines. I’ve still got a long way to go but I’m getting there. Im 53 yrs old.

[Viv54]

Good for you and good luck !🌷

[Smallstepsforward]

Thank you!

[SnazzyD]

I hope it keeps improving. Can you answer a couple of questions please?What were the side effects of Pred that we’re tolerable for you?

I was looking at Adraset at one point - Have you found out how much thyroid type hormone and steroid is in it?

What kind of insomnia is it you have? What I mean is, what keeps you awake eg, brain, pain, feeling energetic etc?

[Smallstepsforward in reply to SnazzyD]

Hi SnazzyD, Do you mean what side effects were intolerable? Re Adraset - I took that when I tapered off pred in October. I had to rapidly taper in order to have a PETCT scan. I took it but I wasn't able to tell whether it helped. I had been on pred for 4 months. I continued to be very tired but I figured that was due to lack of sleep. Re the insomnia - I developed insomnia after coming off long term medication in 2017.I would say that it was physiological to begin with. In the end, I think that it was psychological - breathwork and other measures I have taken to calm my nervous system have helped enormously and of course the acupuncture has been a last thing that has really helped. I hope that helps.

[SnazzyD in reply to Smallstepsforward]

Oops yes, intolerable

[Smallstepsforward in reply to SnazzyD]

Ha Ha! Gosh - as I have a polymorphism in my hepatic methylation gene - it means that i don't process prescription medication well. So I got some nasty side effects. My blood glucose control was impaired, I had fainting spells, tired, very low mood, nausea and other gut issues, weight gain, dry skin and other skin issues. Those were the worst. And it didn't control the pain very well!