Update on Rheumatologist Appointment. I was diagnosed on 13th June with PMR and GCA

[cycli]

Since that date no interest was shown in an urgent consultation and I've been working well with my Dr. to handle this disease. I was eventually given an appointment with a Rheumatologist at Darlington for 12th November. I have just had a phone call and they have booked me in for Monday 20th Sept. at Darlington with a Dr. Pathare cancelling the Nov. 12th with Dr. P A Haynes.. I have sent them a daily diary of my progress since diagnoses and an article I wrote for my cycling community to warn fellow cyclists and athletes of the condition and how similar symptoms can be mistaken and not to be ignored. Hoping for a positive session and anyone who has any heads up about either of these specialists the information would be appreciated.

[Grammy80]

Hi and welcome to the forum,I've had GCA for two years and found this forum a lifesaver. Is your physician managing your steroids? The UK seemed so far ahead of the states in fast tracking GCA patients. It will be great info when you have your consult to have your daily diary. Do you still have symptoms?

Best of luck and keep us advised....there are some real 'old' hands on deck here who saved my sanity over years💖

[cycli in reply to Grammy80]

thanks Grammy 80. I've been on here for a little while learning fast. You are so right that this forum is the place to be. In with the in crowd. Not that any of us wanted to be IN. I have only just been freed of the symptoms of GCA. PMR was simpler. Now I'm looking to reduce so the timing of this appointment is most fortuitous. My modus is forewarned is forearmed . I'm on 40mg since diagnosis. Many believe that wasn't sufficient and I'd probably agree. It's where i am and have just started reducing regardless of any other advice by 2,5mg I split the dose to make it stretch 24/7 and that has taken 2 weeks to achieve. So I'm now taking 37,5mg 20 at lunch 1-2pm and 17.5 after 12pm-3am depending on bed time and sleep, I'm a late person and these days an early riser. Basically peeing for Britain mostly around the clock

[Grammy80 in reply to cycli]

Glad you are doing your deed for your country!!! Here they usually do three days of 1000mg at diagnosis~they messed up at the hospital, and I only got 100 for two days and then 1000mg IV and then tablets. Maybe I'm wrong, but I feel that is why it has been so difficult for me to taper???? but who really knows. The lowest I've gotten is 10 and now on 40mg. Next month we'll try again...but DL's way....slow and steady. It sounds like you are a good advocate for yourself...another gift I received from the forum.💖

[DorsetLady PMRGCAuk volunteer in reply to cycli]

You may find your Rheumy questions why you are splitting dose if he has read the 2020 recommendations linked here…academic.oup.com/rheumatolo...

This is paragraph specifically relating to dosing -

What dosing frequency of oral glucocorticoid should be used in GCA? (PICO 6, 7)

A single-centre, open RCT with unclear length of follow-up compared the effects of 15 mg oral prednisone every 8 h with a single administration of 45 mg oral prednisolone/day. A third (alternate day) group received 90 mg oral prednisone every other day. Patients in all three groups were treated for the first 5 days with 20 mg oral prednisone every 8 h [95].

Remission and relapses at 4 weeks did not differ between groups of split-dose and single-dose prednisone treatment (QoE +). No difference was reported regarding hypercortisolism (which was not further defined), fractures, diabetes and glucocorticoid-induced myopathy (all with QoE +).

Comparing the single-daily and alternate-day treatment groups, at 4 weeks the single-daily group had higher remission rates at 4 weeks [RR 2.67 (CI 1.32, 5.39)] and lower relapse rates [RR 0.11 (CI 0.02, 0.80)] (QoE +). Hypercortisolism was more common in the single-daily group [RR 5.95 (CI 1.57, 22.57)]; fractures, diabetes and glucocorticoid-induced myopathy (all with QoE +) did not differ between groups.

This evidence, albeit low quality, raises concerns that alternate-day dosing may be associated with a higher relapse risk.

Splitting the dose over the day does not seem to confer benefit and potentially carries risks of disturbance of diurnal rhythms, including sleep [96, 97]. In summary, in GCA there appears to be no reason to alter the standard guidance in other medical conditions to prescribe glucocorticoids as a single daily dose in the morning [12, 91].

6. Conditional recommendation: Patients should be prescribed a single daily dose of glucocorticoid rather than alternate day dosing or divided daily dosing. QoE: +. Consensus score: 9.53.

[cycli in reply to DorsetLady]

that's very helpful DL. Opposite is actually true in my case. I am sleeping better and the split has stretched the effect 24/7. I know my body(or I used to think I did)and he'll have to work with me or I'll seek another. I'm sure he will see reason, after all, what personal experience will he be able to share?

[123-go in reply to DorsetLady]

Although I was on low dose of Pred when the doctor at the hospital (not my consultant) wanted me to take my meds on alternate days alarm bells rang! I questioned it and suggested my own plan with reasons and it was accepted without any fuss. I would have argued if he'd insisted.

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

I don’t think anyone on here would be particularly happy with alternate days…..although sometimes it is “suggested” that on low doses it may help stimulate the adrenal glands. Whether it does or not I’m not sure is proven.

The article quote above relates to GCA treatment (not PMR).

[cycli in reply to DorsetLady]

If I did alternate days with the GCA it would flare I am absolutely certain. The 40mg I was prescribed is I believe slightly less than was needed given that I only had 20mg when they thought it was just PMR. when the symptoms came back after a couple of days worse they doubled the dose. I have been trying to make this dose work to suppress GCA and it's only just about there. In shifting my dose timing and splitting I have been aware of the GCA symptoms lurking in the background and surfacing for short periods during the 2 weeks it has taken to adjust my schedule. It seems to be working. There is no certainty with these two diseases. Whatever we may think they have their own agenda and we adjust to them. Don't the experts realise this?

[DorsetLady PMRGCAuk volunteer in reply to cycli]

The good ones do…..but seeming there aren’t enough of them around. Hope yours is.

[123-go in reply to cycli]

I would always advise that if anyone isn't comfortable with what their doctors suggest to question it, politely of course, ask them to explain why they believe it's best for you and have your own suggestion to offer based on your own research and knowledge. We really have to be part of the care we receive and sometimes need to take on that responsibility.The information we receive here has certainly helped me when I've had concerns. 👏👏👏

My own post will follow shortly.

[123-go]

Good to know you have your wits about you. It comes to something when the patient is educating the professional !

[cycli in reply to 123-go]

seems to me it's about time they woke up. Early on when I trained as a furniture production and design manufacturer with 4yr diploma I went from industry after 7 years to FIRA a research centre to be an industry consultant. When there I couldn't understand a word of what they were gabbling on about. Took a few days to realise they had their own specific jargon to talk as if they were experts. Turned out they knew diddly squat about actually making what they were supposed to be researching and testing. That shifted the scales my way and we developed a much better working relationship and we all learnt about each others particular store of knowledge. One chemist actually said " I wish they (mnfrs.) would go away so I could get on with my work". I pointed out that without them he wouldn't have any.

[PMRpro Ambassador in reply to 123-go]

The good ones do learn from us - Prof Mackie in Leeds and Christian Dejaco here have both told me how much they have learned about PMR and the patient experience of it with me as a medium for the things we learn here. It does require a particular type of doctor though - the ones who went into medicine for prestige and salary don't do so well ...

[Hidden]

Your sense of humour is not affected by the illness I see 😂😂

[cycli in reply to Hidden]

how else are we to get through this crippling inconvenience stills?

[Hidden]

Hope you like this

Victorian gentleman cyclists

[cycli in reply to Hidden]

love it stills. They look serious racers. fancy racing penny farthings !!! but then I think 50mph to 60mph downhill is fun.

[PMRpro Ambassador in reply to cycli]

As with skiing - it is - until it isn't when you come to a sudden unplanned stop

[cycli in reply to PMRpro]

been there. Still do it I hope. That's the buzz. Makes all the effort to get to over 2000m on climbs worth it.

[cycli]

SO, to progress with the split dose. Now reduced to 35mg at 17.5 post 12pm and 17.5 post 12noon -2pm. Sleeping till 4.40am precisely and loo. No pain or issues. Slight twinges today low rt, hip/back, rt shoulder, left knee back. No pain so continuing with 35mg. Working during daylight and walking dog twice a day. Slightly slower and less supple today but otherwise fine. All recorded and logged. Printed off a copy of relevant para. Thanks D.L. if tomorrow as positive then I think we have begun to take some sort of control. Will be interesting to see how the Rheumatologist approaches the consultation. If he sticks to their program for me without regard for my experience it's going to be quite a session. Two morning to see more progress or an improving status. Hope it continues improving or at least stays stabile.

[cycli]

.Well, that was interesting. Been doing medicine for 30 years, now 50's and too young to be a sufferer from PMR or GCA so anyone that age has been wrongly diagnosed. Didn't inspire me but he was knowledgeable. Too busy to read my diary and started asking questions that were all answered by the diary.. Likes to see patients 3-4 days after diagnosis so whose fault is it then that there has been a 3 month period? I wouldn't question expertise oncycling so let's not go there on my medical qualifications. Despite that having setout our platforms I quite liked the cocky , genuinely knowledgeable assured specialist. He's looking at possible other causes of some of the symptoms which don't fit the pattern and I think that sensible. he wants a biopsy but admits the results after so long on 40 mg and the effects might be inconclusive of GCA. Unfortunately to prescribe TCZ which is expensive he may need such a confirmation to sanction. That's on hold. He's happy with the way I'm tapering and reducing now and wants me down to 20mg in 12 weeks time. From what he said I'd be on a 5 mg reduction from when I started to now and given that it has taken this long to stabilise I think would have been too fast. He's a 5mg every 4 weeks straight reduction. Small blessings. My blood tests show the inflammation and sedimentation have flat lined so definitely reflects the way I am feeling and reacting. That's a real positive 4 and 2 now yippee. Didn't say about blood sugar diabetes which last time was 44 so will wait till my DR has seen them and we can have a chat about them. All in all it was positive and I can work with him. Let's see what progress can be made in 3 months when the next appointment is scheduled. All good fun.