GCA Update

[survivalist]

Was at the GP yesterday and the GP tried to get a response from the rheumatoid consultant without any luck on the phone etc

GP is switched on to the problem , got a lot on with me its clear , she is trying to get it expedited.

Proof of this I had an appointment at 4pm today but GP phoned this morning and called me in for 10:30am today.

The GP has had lots of blood tests done C-RP , ESR Sedimentation rate , Liver function , diabetes, urine sample and blood pressure taken.

Blood pressure was 165 / 90 but only when they were getting the steroid dosed mixed up a bit and I had to do a Quiet WTF. I was nice about it but firm “ have you got this wrong, I think you have “ as they put it to 20mg at the dispensary for PMR forgetting it had been put up to 40mg for GCA. GP corrected it and its all sorted at 40mg. Blood pressure then retaken and went straight down to 125/ 68 ( textbook stressing on steroids )

Also told them I need a blue card long term on 40mg woops they forgot that too I have one now .

Medication

Omeprazol ( that's me asking first probably before they had chance to think about it to be fair , uncoated Prednisolone is iffy on the stomach in larger doses and they are not giving me coated pills so I asked for it. )

Aspirin ( 75mg per day )

Prednisolone 40mg a day

Calcium pills ( but guess what they don't have any at the moment so I will have to get them some other time)

Told me not to overdose on vitamin D as I'm taking cod liver oil pills and eating lots of oily fish said “ I don't want you back here with overloaded Vitamin D issues as well”

Waiting for the blood tests to be done at the surgery Local hospital phoned me on partners mobile re Rheumatoid consultant appointment

First and only one I have been offered is 17 MAY its now Feb 20th I nearly asked which year.

OK I cant fast track a biopsy and in 3 months time on 40mgs again to be fair possibly reduced by the GP in a months time to 30mg Maybe / Maybe not its less likely there will be evidence of giant cells from a biopsy.

Therefore it is probable I will not know for certain if I need to be on 40mg – 20mg for a long time or not , I will have been on it months by the time I see the consultant anyway.

However my sight is OK mainly because I diagnosed the CGA symptoms early enough. If I had not been able to get to see a doctor at the out of hours appointment I had planned to take 40mg anyway. I have read the text book too. If I had not done all this I could well have irreparable sight loss by now.

All I can do now stuck on high prednisolone is to avoid as many side effects as possible and there is very little I can do for that

What do you think have I got this about right ?

[PMRpro Ambassador]

That time scale for a query GCA patient is disgusting! Does nowhere in reach have a fast-track set-up?

Otherwise - sounds fair...

[survivalist in reply to PMRpro]

Thanks for the reply I agree about the GCA delay. I am however helped by the ' particularly otherwise sounds fair ...' because its beginning to feel to me like I'm getting the hang of what's going on re understanding my treatment and it helps if someone else thinks roughly the same.

I am now thinking as I'm likely to be back to the local GP in one month. At that time we may decide that's GP + Me, advice from a consultant if possible but apparently unlikely , after ESR and CRP blood tests and if symptoms are gone to follow NICE as in

cks.nice.org.uk/giant-cell-...

Specifically reduction from 40mg slowly down to 20mg if and only if there are no indications that this would be a harmful of course and with advice from the GP .... I would have put 'etc' after the GP but it looks like the consultant is the 'etc' and we may sadly be on our own for the first 3 months by the time I do get to see the consultant I could be on 20mg according to NICS guidelines.

I feel this is not so bad if and only if I get away with the next 2 days on 40mg ( where the first 7 days are the most dangerous time for sight loss if under medicated.

By NICE guidelines I have been technically under medicated for 5 days already. I should be on at least 60mg for my body weight according to them .

NICE states .75mg per 1kg body weigh as a minimum starting dose and I'm over 90kg.

However once I do get over the first 7 days, being on 40mg already will not be the worst position to be in if I have got all this right ?

If I were to ask the medical profession one thing on this it would be this question.

What is the point of the consultant in this case of GCA at all if they are not involved until 3 months down the line beyond the critical and most dangerous phase of the illness while its being dealt with elsewhere.

I don't think I will be asking this question I can see PMR / GCA people need to stop fighting the world in good causes like the famous Don Quixote tilting at windmills in order to live to fight another day.

Before GCA I would have come out from my corner like the incredible hulk the speed of a laser guided missile in cage fight and there would be people in deep trouble if they tangled with me.

If I fought this one to go for a Biopsy ASAP I would win the fight there is no doubt about it , but I might well die of a stroke doing it so I'm buying a kids toy BB gun to play with in the garden shooting plastic zombies with my grandson instead … being a great big kid is not so silly.

[survivalist in reply to survivalist]

I'm at home suddenly I have just had a phone call from a R- Consultant ,wants to see me ASAP Friday lunch time. That's 6 days into GCA from the emergency hospital appointment suddenly everything's changed. Also advice on going up to higher steroid dose over the phone. Its like somebody has a magic wand

[SheffieldJane in reply to survivalist]

Result! Good on you!

[Oxford8 in reply to survivalist]

What great news! I was getting really worried about you. Thank goodness the Rheumy Condultant has come in early. You have prepared yourself brilliantly. Good luck with Friday's consultation. 🙂🌷

[PMRpro Ambassador in reply to survivalist]

Thank goodness - what hospital is it???

[survivalist in reply to PMRpro]

The consultants on this one are not in the main hospital but all seem to be centred in a new heath park in Truro Cornwall. I dont know the hospital I would go to if I'm being sent for a Biopsy yet but I would resonably assume its the main hosptial in Truro Cornwall.

[Hollyseden in reply to survivalist]

So glad you've got that Friday appointment, months away would be so wrong. When doc suspected I may have GCA, he phoned rheumy who advised me to go up to 60mg pred until biopsy was done. That happened quickly, the next week I think. Unfortunately it took weeks to get results back, which were negative. Meanwhile I was on 60mg and about 2 hours sleep a night. Hohum. PS my daughter was born in Treliske hospital Truro. Small world isn't it

[survivalist in reply to Hollyseden]

I'm on 60mg too after the R-Consultant meeting with minor sleep issues.

I didn't have Jaw caldination in the meeting and I could not very firmly confirm it had happened before because I have had all sorts of feeling round the same area. Its supposed to be a red flag for upcoming vision issues but would you believe it I got it on the way home in the car eating a cheese straw! When to 60mg instantly.

Biopsy is ASAP next week or week after.

Couple of very useful tips for suspect GCA that could have helped the consultant.

If you even slightly suspect your going GCA Keep a diary of anything , significant or not . you don't know if its relevant it might be.

They need a strict chronological order of events and symptoms without a careful record taken with you in a diary its not easy to get every detail right in the correct order on high steroids.

Luckily I had my diary and medication level records with me.

What I failed to do was take pictures when the arteries were up. The Consultant looked very slightly disappointed. Lots of people have mobiles today and its B obvious in hindsight . I think this is a must do for anyone in the same situation.

I have apparently probably due to the PMR / GCA lost a lot of weight from about 92kg ( 14.5 stone ) to only about 78.5kg ( 12 1/3 Stone) but this fits NICE guidelines as text book for 60mg and it just happens to be a near enough a perfect BMI.