A thank you to this site

[Irldino]

This morning I came across an old notebook that recorded the first few months of my PMR journey. I was diagnosed in late January 2015. I resisted steroids for almost 6 months and worked on diet and alternative treatments. Eventually I realised that steroids were the only route! Reading through my notes reminded me of how helpful this site was on my steroid journey. I came off steroids in June 2018 and have had no relapse.

Its not an easy journey but you can get through it. Lots of rest, good diet and gentle exercise is very helpful. My hips and shoulders are absolutely fine. I am very healthy and I have had no issues apart from my knees. PMR left its mark there although my consultant and doctor both see no connection. Knee osteoarthritis was diagnosed and I had one very successful TKA last April. The second one is due this April. Resisting steroids for a period did not help as my body was very still and tight for too long. I really think this left its mark on the knees.

A huge thanks to this site as it was my bible and I listened to the advice here in withdrawing from pred more than I listened to my doctor. I wish you all the very best in your journey

[Charlie1boy]

Good post, and I totally agree about the Forum. You did better than me ( I know it’s not a competition!), as I too was diagnosed as good as in January 2015, but didn’t get to zero till October 2022,

[PMRpro Ambassador]

Thank you so much for coming back and telling us your success story. Few people hang around after they get off pred and I think a lot of new members don't believe us when we say it does happen - and more often than you would think!!

[DorsetLady PMRGCAuk volunteer]

Good to hear..

[PMRCanada]

Your story is an inspiration! Hope is alive and well especially after reading posts like yours. Thank you for sharing.

[SheffieldJane]

Thanks for taking the trouble to post this feedback. It helps those of us who are stuck or struggling. Long may your health improvement continue and you lovely open mind.

[AtopicGuy]

That's great news! Osteoarthritis is not an autoimmune condition, so it is unrelated and delaying steroids wasn't the problem. If you'd said rheumatoid arthritis, then you'd have been right. OA is wear & tear to the cartilage buffers on the end of each bone in the joint.

[Irldino in reply to AtopicGuy]

I still wonder about the PMR connection to the knees though as I never has an issue with my knees before PMR and had issues with them from the early days of that journey. I guess everything is connected in some way. I was diagnosed very early on, within 4 weeks of the earliest symptom appearing which was fortunate as I know from reading individual stories that some people have been months if not years before diagnosis. I think the whole experience just put a lot of pressure on my knees and weak muscles played their part

[PMRpro Ambassador in reply to Irldino]

Knees are commonly part of PMR:

pubmed.ncbi.nlm.nih.gov/238...

[Irldino in reply to PMRpro]

Thank you for this link PMRpro. It makes sense to me that knees are involved so good to have the research into it. Much appreciated,

[AtopicGuy]

If PMR curtailed your exercise regime, perhaps that brought about osteoarthritic changes in your knees?

Since PMR is predominantly a disease of the elderly, it is no surprise that many of the same patients also have some arthritis (disease of the joints), whether diagnosed or not. The only way an epidemiological study could say whether the two conditions are connected would be to specifically try to control for arthritis statistically. I don't know whether such studies have been done.

As scientists say: correlation is not causation.

[PMRpro Ambassador in reply to AtopicGuy]

Perhaps you would like to read the link I gave above? PMR is manifested in the knees in a large proportion of PMR patients. Peripheral arthritis is found in about half of patients.

[AtopicGuy in reply to PMRpro]

The opening line says "Peripheral arthritis has been described in up to 50% of PMR patients, with knee involvement in the majority." [The bold is mine.] Arthritis is a disease of the joints; PMR is a disease of the muscles. They are not one condition, but we already know they often have a common cause: systemic auto-inflammation in the elderly. So it's useful, but no surprise, that they confirmed the correlation.

Note that 20% of the control group had signs of rheumatoid arthritis. If this is genuinely representative of the whole elderly population, then there is a huge pool of undiagnosed people with systemic inflammation, of which only a small minority will complain of, and then be diagnosed with, PMR/GCA. No surprise there.

What is more surprising is that "No correlation was found between PET/CT results and ESR or CRP." And they don't say in the abstract what drugs the PMR and cancer patients were on before or during the scan. If the cancer patients and/or PMR/GCA patients were on different drugs, and this resulted in their livers taking up different amounts of FDG, that alone could bias the results. There's devil in the detail.

I'd like to see the full paper. Do you have a link?

[PMRpro Ambassador in reply to AtopicGuy]

Had you bothered to look at the abstract I linked above, you could have clicked on the link there

academic.oup.com/rheumatolo...

You seem to think you know better than some of the top groups in the PMR field. Why don't you contact them with your criticisms of their work?

[AtopicGuy in reply to PMRpro]

I did look, but it was late and didn't find it.

On the contrary. I do not criticise the studies (they all have strengths and weaknesses): I criticise those who cherry-pick numbers from them that do not stand up to scrutiny. Bandying around unsubstantiated statistics helps no-one.

[Irldino in reply to AtopicGuy]

One of the very early changes for me, before I even got my diagnosis, was that I could no longer sit back on my heels which was something I regularly did. The restrictions in my knees started as immediately as the symptoms in the pelvis so restricted movement didn’t initiate my knee problems however I always thought it played its part. Once I was on steroids, I walked regularly, did tai chi and had a good movement pattern but I think in hindsight quads etc were very weak and this affects the knees too. As I dropped towards lower doses bakers cysts and other knee issues arose. It’s all interconnected. I don’t have any arthritic symptoms anywhere else so am very fortunate in that regard