PMR/GCA or not

[softekcom]

I went to Kings College hospital last week for a long delayed appointment with a Rheumy.

To be told straightaway that I don't have PMR/GCA and that I should come off Pred ASAP (because of the horrific side effects.) Inflammation markers don't support the diagnosis, no PET or CT scan done, that there are several conditions that mimic PMR, that as long as I am on Pred they cannot make a definitive diagnosis.

Also, the black patches in my left eye in late 2021 could not have been GCA because it was resolved by increasing the dosage to 50mg Pred, and I would have suffered permanent damage. The minimum dosage for GCA is 60 mg, nothing less would have helped. I was also much too young because my symptoms started when I was 43 and diagnosed by a GP at 50.

I was instructed that if i have any symptoms/crash again, I must not increase my Pred but take myself in to the GP or hospital to get bloods done first.

i tried explaining that afaik 1/5 cases don't show inflammation, that the disease doesn't follow a textbook course, people don't recover in 2 years, etc. But no,

While i have no problem coming off Pred (now at 8 mg, reducing by .5mg every month), NOTHING i was ever prescribed before Pred ever worked. Not Tramadol, not Amitriptyline, not Pregabalin.... I haven't had any GCA symptoms for a year now. I feel I'm on the mend. So in my mind this is now an academic question. What was it then?

The Rheumy who saw me on Thursday saw a very different person to the one my GPs have seen for a decade. I had showered, dressed for the cold, travelled from Lincoln to London, walked, pushed doors open, held a conversation and argued my point of view. My GPs on the other hand had to pick me up off the floor, i was pathetic, suffering unexplained aches/pain and awful fatigue. And after years of eliminating various conditions, they prescribed Pred - and then boom, i felt better.

The first Rheumy I saw in Lewisham thought I had PMR/GCA but also wanted it investigated further, and wanted to check for MS as well. Since then three Rheumies don't think I have PMR. my attitude is - it's the Rheumy's job to figure out what this is, not mine. The Pred worked - for whatever reason. I haven't had the GCA headache and jaw pain for a year at least I think. I am tapering down. I am happy to keep an open mind - it's all academic. All very interesting.

[DorsetLady PMRGCAuk volunteer]

Oh, flippin’’ Nora -

“I should come off Pred ASAP (because of the horrific side effects)”. -what about the horrific side effects of adrenal insufficiency with coming off Pred too fast!

Good to hear you think your GCA is nearing its end [I believe you, but what would we patients know] but what a waste of time, money and effort.

Good luck with whatever it is the doctors think you have….😊

[PMRpro Ambassador]

Wrong on so many counts.

"Also, the black patches in my left eye in late 2021 could not have been GCA because it was resolved by increasing the dosage to 50mg Pred, and I would have suffered permanent damage. The minimum dosage for GCA is 60 mg, nothing less would have helped. I was also much too young because my symptoms started when I was 43 and diagnosed by a GP at 50."

The black floaters were a warning shot - like a TIA (ministroke) or amaurosis fugax leaves no permanent traces. The literature says you have about a week between the first visual symptoms and permanent damage. The starter dosage for uncomplicated GCA is 40mg and we have had patients on the forum with jaw claudication and visual symptoms where it was adequate although higher is recommended for those situations.

And 43 is NOT too young:

walesonline.co.uk/news/wale...

The pathologist knows it ALL - but it is too late.

As it is - adrenal function is what will limit the speed with which you come off pred and as DL says - the side effects of that make those of 8mg pred look pretty mild.

[bussell]

This sounds like a bad experience on several levels. Fortunately it seems you are informed and levelheaded enough to chart your own course here, though that absolutely should not be what you have to do.

I had a session with a rheumy at Kings three weeks ago (after an MRI scan which showed quite severe tears in glut muscles that caused a lot of pain and had my GP scratching his head). First experience with an "expert" in two years - it was wholly positive! Dr Gordon listened, gave me all the time I wanted, asked pertinent questions, emphasised the importance of reducing pred slowly and to use my own common sense, explained the whole business of adrenal wake up and danger of adrenal failure etc. (On 5 1/2 mg at present) I only mention this in case you go back to Kings in the future. And recommend you ask for this consultant by name. very best wishes.

[softekcom in reply to bussell]

Interesting. Only one of the three skeptical Rheumies wanted me to come off Pred slowly. The two blokes wanted me off Pred asap. Not one of the three warned me about adrenal insufficiency.

[bussell in reply to softekcom]

thank you for the follow up reply. I note the time you sent it and I read it! Good old Pred…..

[Flivoless in reply to softekcom]

This is scandalous and needs reporting in an effort to prevent these bigots from possibly causing irreparable damage to others.

[Suet3942]

I count my blessings that I was diagnosed quickly with pmr 11 years ago and got really good advice from various rheumatologists but the one I have now is brilliant. And I’m so pleased I found this site. It’s been invaluable. When you’re getting conflicting diagnoses it must be awful. Hope you get some answers soon.

[MiloCollie]

it’s all very stressful. Feel for you x

[Sophiestree]

Sorry this is late, but I have finally got onto my computer (still can't reply via my tablet and no response from Healthunlocked)

Can I ask why you went to Kings College if you live in Lincoln?

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

What is the issue? If it’s the nospaces problem see this - healthunlocked.com/pmrgcauk...

[softekcom in reply to Sophiestree]

I've been under Rheumatology in Kings since I was first referred there by my GP in 2013. I was living in London at the time. The appointment last Thursday was arranged while I was still living in London, i.e., before my move to Lincoln.

i have found it really difficult to get appointments here in Lincoln, though A&E / Urgent Care & Ophthalmology were brilliant when I had the black patches in my left eye in Q4, 2021. The wait for Lincoln County Hospital Rheumatology is really long. So I thought best to just continue with Kings as they have all my records since 2013.

My GPs here in Lincoln are very skeptical, not like my GPs in London. But then they are seeing a completely different version of me - walking erect, showing at least some energy, clearly taking care of myself and coping. They have not seen the mess I was before Pred. The updates from the three Rheumatologists (2 from King's and 1 from Lincoln) who doubt I have PMR/GCA are on my medical record - so my Lincoln GPs probably think I'm some kind of nutter.

It just made sense to me to stay with King's - they have a larger team, greater resources and my medical records since 2013.

[Sophiestree]

I don't get as far as that. I click on reply, the keyboard comes up, and immediately disappears.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

I’m guessing you’ve tried all the usual things on tablet… and that’s its only HU site that is playing up?

..and if you reported via help desk, did you get an email from Brett asking for more info?

[Sophiestree]

Yes, only HU.

I'm a techie, so feel I have tried everything, but don't want to assume I've done everything,

I got a reply saying it would be forwarded to the relevant people.

I'll just get the laptop out more I guess.

Thanks for the reply....

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

okay -if it does rumble then do nag them..,,