The latest on my gca

[polymy]

My GP rang yesterday to say that even on 40mg pred my CRP is still high. My ESR is normal. My symptoms have disappeared so I thought all would be well. She rang the rheumatologist for advice and I have been told to stay on my current pred dose and that I am to have an ultrasound scan on the temporal arteries. Does this sound reasonable?

[PMRpro Ambassador]

Can't imagine they will see a lot if you have no symptoms but it will be interesting to hear what they find. If they have the u/s option why haven't they done one before? Or have they?

How long have you been on 40mg? CRP may take a while to fall - you haven't got any chest problems do you? I wonder if involvement of chest arteries can increase the CRP????? Must ask his nibs sometime.

[polymy in reply to PMRpro]

Hi PMRpro,

Have been on 40mg for 3 weeks. My symptoms were jaw claudication and a kind of niggling headache on the left temple. No visual disturbance. ESR and CRP both raised on the bloods. I mentioned it quite casually when the doctor rang on another matter. She said to come straight to the surgery there and then. She had the blood results by evening and prescribed 40mg. She has been in contact with the hospital rheumatologist who has asked for the u/s. Was there a need for one before then? I don’t have any lung problems and clear arteries. There is my cardiomyopathy of course.

[PMRpro Ambassador in reply to polymy]

10/10 for her - jaw claudication is a significant symptom. I think the u/s would have been more use sooner but I also think the halo sign does persist. And the cardiomyopathy would increase the CRP I am fairly sure.

[jinasc in reply to polymy]

I started on 60 mg and it took one month before it settled down, wonder if the starter dose is too low. I had all the classic symptoms,

I am curious which hospital?

Also like PMRpro, would love to know if the 'halo' is still there.

PS I am in remission 8th year.

[polymy in reply to jinasc]

The hospital is Queens Medical Centre in Nottingham. Have been under rheumatology for PMR for over 4 and a half years. Their advice to my GP was to leave the dose at 40mg until I was seen at clinic, but of course my consultant had phoned in sick and my appointment was cancelled.

[jinasc in reply to polymy]

Oh dear that often happens..............they are so short of people in the NHS.

Ah, In wondered, ages ago (and I mean years) we were told to recommend someone with GCA to a Consultant.............can't remember the name.

[Marijo1951]

As somebody who had an invasive and uncomfortable biopsy on my temporal artery, I find it encouraging that you have been offered an ultrasound scan which will be painless and more thorough than a biopsy can be. The sooner the ultrasound scan becomes standard, the better. Good luck.

[polymy in reply to Marijo1951]

Many thanks.

[jinasc in reply to Marijo1951]

yes, it is cost and the training of personnel..............

[Marijo1951 in reply to jinasc]

I know, but that does seem like short-term thinking. I had 2 doctors and 4 nurses when I had my biopsy, and presumably somebody then had to do some lab work on the result. Ultrasound must need 1 staff member, or maybe 2, and the results are immediate and more reliable.

[jinasc in reply to Marijo1951]

I agree with you about short term thinking, I asked the question and was told just over £10,000 to train one person.................I was surprised to say the least.

[PMRpro Ambassador in reply to Marijo1951]

Yes, but they were part of a minor ops clinic that was there anyway, routinely scheduled and doing other procedures the same day. If there wasn't a TAB to be done, there was still other work to occupy them so slotting in a TAB at short notice is an option.

The cost of training someone to do the u/s means them spending 6 months not being generally available in the unit where they usually work or being paid a salary if they are just being trained and haven't a fixed post yet. Either way, it is an extra cost. The post won't be exclusively GCA u/s when they have completed the training - there simply aren't enough GCA patients in any given unit to keep them fully occupied. To have continuous coverage there need to be at least 2 part-time staff who will not be allowed to be on leave at the same time - you can't just leave the service vacant for 3 weeks for the summer holidays for example and when someone leaves you usually have to train a new member of staff to keep the service available. To keep up the u/s skills you must do so many per month, my colleagues used to say they could feel rusty even after being off for their summer holidays.

And the NHS is strapped for cash and staff anyway.

[Marijo1951 in reply to PMRpro]

Thank you PMRpro, I'm humbled by your detailed and logical explanation. It reminds me of when I worked for London Underground Customer Services and people used to write in with what were (to them) very obvious solutions to extremely complex issues and I had to reply more or less politely telling them that they hadn't a clue...

[PMRpro Ambassador in reply to Marijo1951]

You are obviously better mannered than me!!!! I'd have sent a "roach letter" (google it if you don't know what it is )

[Marijo1951 in reply to PMRpro]

Well, we used to have fun sometimes writing the responses we would really like to send, but couldn't if we wanted to keep our jobs ...

[pollymarierose]

Maybe because of the 40 mg. is why your gca symptoms are under control. I've had only slightly raised markers for gca. Yet on 70 mg of pred I can't get my symptoms under control. I had an arterial biopsy 2 days ago and made a believer out of the vascular surgeon not to go by markers. He had to look for 2 hours to find an artery that wasn't inflamed but couldn't be used because fibrosis had already set in.

So, in my opinion, I will stay in any dose to get or keep gca symptoms away.

Best of luck to you! 🙂

[polymy in reply to pollymarierose]

Many thanks. It all adds to my knowledge on GCA.

[PMRpro Ambassador in reply to pollymarierose]

Hallelujah!!!!! Rough for you - but the more medics who understand that people needn't have raised markers but can still have severe GCA the better.

[pollymarierose in reply to PMRpro]

Thanks, PMRpro! I know I've changed a couple of doctors and it's helped me alot that I could do that.

[HeronNS]

Three weeks isn't very long and you should be staying at the 40 mg anyway - that is the lowest amount you'd get for GCA I believe. Best to stay at 40 till you are sure things are on the mend then reduce slowly - no flares. Read too many posts from people who start at 60, are dropped rapidly down to 40 or even 30 then flare and have to go to 80 to get relief again. Our motto: "It isn't slow if it works!" (thanks PMRpro). And it sounds like your medical people are on the ball and sensible.

[polymy in reply to HeronNS]

In the main my GP practice give very good care. My GP was on the ball there. I didn’t realise 40mg was the lowest dose. Thank you for that.

[HeronNS in reply to polymy]

Yes, I think they recommend between 40-60 if there have been no visual symptoms. If vision is involved they start with at least 60. And it takes a while, I think several months, for the inflammation to be brought properly under control even if all the symptoms have gone, which is why a slow taper is a good idea - the patient has time to distinguish between pred withdrawal and disease activity.