Follow up to: Help I’m not sure what to do next.

[Paininthenck]

Hi everyone. I have started a new post as wasn’t sure update would show if I responded to original thread.

I saw Rod Hughes yesterday. Lovely man, bit condescending but at least he listened. Agreed it’s possible I have GCA as well as PMR but wasn’t interested in pursuing further diagnostics for this as in his view he wouldn’t treat any differently? I explained my ESR was only ever raised slightly and no elevated CRP. He said that with PMR 25% of people show no markers but with GCA 100% of people have raised levels. This is different to what I have understood from the forum, I thought it was 20% of people show no elevated ESR/CRP but didn’t challenge further as he also stated that whilst on pred results are often misleading. He believes my flare is as a result of COVID fallout, or I have long Covid (which he said doesn’t fit the current criteria as it’s not diagnosed until post 3 months of the infection), or a bit of post covid fatigue and PMr. He was concerned I am still on 25mg pred with no improvement and was reluctant to go up further (as am I). So he offered a steroid injection 120mm dexamethasone immediately as this would help to identify if my main issue is flare or if there is something else going on. I have not read this as a treatment for flare so wondered if any you have been offered this? He said this will be more effective than increasing tablets as works slightly differently and should kick the inflammation enough to allow me to stay on 25mg and slowly taper down if my symptoms are purely as a result of a flare!

So, I had the injection and will see what happens, I have a follow up in 2 weeks to see where things are. This morning I do feel slightly more flexible and little less pain but no amazing change 🤨

Interestingly he spoke a lot about the impact on the bodies of people like us who have autoimmune disorders of the Covid vaccines, how it has probably been a lot for our systems to cope with on top of our illness. I have reacted to each vaccine and recently declined my 4th as I was feeling so rough I didn’t want to add anything else to the mix!

I’ll let you know if the injection helps and be interested to hear if any of you have been offered this as a treatment and your views on his treatment approach in general.

I have made a request to my GP to make an NHS referral for Rod Hughes so be interested in how he responds to that!

[SheffieldJane]

I think that I would be pretty satisfied with that consultation and his experiment with the treatment. I can see his thinking. If you don’t feel a lot better there is something else afoot. I think a condescending or an avuncular response to patients is a kind of occupational hazard. Give me that any day rather than the dismissive and downright rude ignorance we see reported.I am interested in his figures eg 25% of PMR patients do not show Inflammation in blood test but 100% of GCA patients show raised levels of inflammation. He may well be privy to more up to date information than we are. I’d love more certainty.

I feel sure he’s right about the further assault on our already compromised immune system by vaccines. However, the alternative was pretty grim.

I hope you get to keep him. He’s a good doctor for us, whose reputation in our field precedes him. Lucky you in my view. 🎈

[Paininthenck in reply to SheffieldJane]

I may have done him an injustice as he was also warm, supportive and listened and I am really pleased to have seen him. If I don’t get NHS referral I will carry on paying as I feel he is at least in my court and if you don’t ask …..

Genuinely was happy with the consultation as I feel I am at least making some progress and he can hopefully guide my GP!

[SheffieldJane in reply to Paininthenck]

It’s just that the really good ones seem to be quite rare, particularly with our unusual diseases. I hope I didn’t come on too strong. X I really hope he can take you on his NHS list.

[DorsetLady PMRGCAuk volunteer]

"with GCA 100% of people have raised level" ..

Wouldnt want to disagree with an expert...but.not sure that is strictly true- this study from 2 years ago seems to suggest a different view -

rcpjournals.org/content/cli...

..and mine weren't at outset, which was why they werent followed up, 18 months later on diagnoses they had risen (not unexpectedly).

and we do quote between 5-20% of patients with PMR do not have raised markers - average of various studies.

Hope your injections works, and agree there probably is little to be gained in further tests, as he's treating as GCA!

Please keep us up to date.

[Paininthenck in reply to DorsetLady]

Thank you. I feel much more positive just because someone who knows what they are talking about is providing support.

Fingers crossed 🤞

[SnazzyD]

Here are a few articles

emedicine.medscape.com/arti...

ard.bmj.com/content/77/Supp... is a letter with references from Nature saying just that too.

nature.com/articles/eye2013208

I agree that for some the vaccine has been a heavy blow. It has taken me three months to get over my last one. I had facial neuralgia and general pain and a return of Fibromyalgia. That’s it for me.

[Paininthenck in reply to SnazzyD]

Thank you, I will read with interest. So much to learn!

[PMRpro Ambassador]

I think that is all quite fair to be honest. Depotmedrone injections are an alternative option for managing PMR and there have been a few people on the forums who have had them - mostly successfully.

Funny - condescending isn't a word I'd associate with him because whatever else - he listens! Which is more than a lot do ...

Though like DL and Snazzy - don't agree with the GCA is 100% raised markers. If it was the case there might be fewer missed cases.

Vaccine - I noticed a flare with my second Moderna. Can't say about the third really - been in a constant flare since the second but I have had other contributing factors.

[Paininthenck in reply to PMRpro]

He was also warm, caring, interested and supportive so I apologise (to him) as I did not capture that and he can be as condescending as he likes if he can support my path through this effectively 👍

As I say I am back in a fortnight, hoping I will have improved and then can plan the tapering. I’ll keep you informed

[bakingD]

HiI saw Rod 5 weeks ago now my PMR was out of control I was on 2 mg Pred trying to go down to 1.5mg

He gave me depomedrone injection and over the next few days I was so much better- increased to 2.5mg Pred and am able to swim and do stuff now

Trust his judgement not saying you don’t- he’s the best Rheumy have seen

Good luck 😉

[Paininthenck in reply to bakingD]

Oh thank you, that’s really encouraging and I’m so glad to hear you are feeling better. I have everything crossed, it’s the fatigue that is the real killer at the moment, but truly optimistic as what he said makes perfect sense and I really felt he is in my corner. Take care x

[PMRpro Ambassador in reply to Paininthenck]

You will find loads of people on the forum who say similar, that's why I am happy to pass on his name. But he is also experienced and up-to-date and doesn't want to treat everyone the same.

[powerwalk]

Very interesting. Glad you had a good visit an have confidence in him, makes such a difference. Not sure I've never gotten that feeling about my PMR care! Lost without the forum! Best of luck, I hope you have good results from your injection. Thanks for update.

[Pixix]

I think you were very lucky to see him. A lot of folk on here are having a very difficult time with regard to rheumy specialists! I realise you paid & probably travelled but how worth it…& immediate action. I, for one, am envious!!

[Paininthenck in reply to Pixix]

I agree. I didn’t expect immediate action so was delighted to be offered an injection there and then. To be honest he’s not too far from me, 35/40 mins drive do I am fortunate but without the forum I would never have known who to approach so am incredibly grateful that we have this forum to support each other.

This morning I feel a little brighter again, trying not to get too excited but definitely optimistic that this is working 🤞😊

[Pixix in reply to Paininthenck]

Oh, no further than a lot of people have to travel, that’s good. It’s also good to be optimistic!!

[Temoral]

Agree that good rheumys are like gold dust. Anyone recommend a RH equivalent in Coventry/Warwickshire area...he is further North I presume...

[PMRpro Ambassador in reply to Temoral]

RH is further SOUTH - Chertsey!

[DorsetLady PMRGCAuk volunteer in reply to Temoral]

Might be worth raising new post to ask about Rheumy-not many will read this request tucked away in an existing post. Have mentioned jinasc so hopefully she will -think she has a list of recommendations.

[Temoral in reply to DorsetLady]

Thank you...GP was very supportive this morning...approved your slow tapering method, he said 'I am in favour of whatever suits my individual patient as we work together.' He is taking over the monitoring of the tapering, and advice. Happy with that. Also reassuring over AA...saying take it whilst on steroids and he will review as I reduce/reach a much lower dose. A good GP!

[PMRpro Ambassador in reply to Temoral]

Definitely a keeper!!!!!

[DorsetLady PMRGCAuk volunteer in reply to Temoral]

Good..hang on to him as long as you can….