Well, Just received the call after all from Mr Saha rheumy, 6:30 pm. What are your thoughts ? He wants me to reduce steroids from 40 mg tomorrow to 30 mg for two weeks, then 20 mg for two weeks. He said he will get his secretary to email all the details through how to taper the rest of the time. He mentioned that I was doing alright and pleased with ESR/CRP. However, when I told him that the pain has now moved from left side upper jaw to right side, only on biting down he noted it. Do you think this taper to too much ??
I'm not an expert just another member but it seems awfully quick to me , I'm sure our resident experts will be along soon to help you xx hugs
It does sound fast but at higher doses you can often drop quicker down to 20, as long as symptoms are controlled. Basically though you could do 10mg a week....again as long as symptoms controlled. Once I hit 20mg I would do Dead stop nearly slow. I am sure they must realise that reduction like this is based on GCA symptoms not surfacing so you must contact then. When they email you email back and say if my symptoms come back I will need to contact you regarding this reduction and if visual symptoms start I need to know exactly what you expect me to do in the current climate. Again...the reduction is based in symptoms being controlled. Your jaw is worrying so take a beat for a weekend, rest, not too much thinking, relax your jaw throughout the day and see where you are Monday first thing. I think I sent something like this before but try it but not enough to make it hurt more....slow, gentle and relaxed.
Just checked internet Poop and they're saying reduce from 40 mg to 30 mg over a four weekly period not two weekly. Wondering where he's getting his info from. I'm going to count up my steroids to see how many I have left. People are panicking for their scripts now.
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He is going super fast but if he is thinking it's not GCA. ...?? I really think he needs to explain his thinking and why so fast. So wait to speak to him. I really don't like him talking chances with your remaining sight. Remind me and others Anne...what tests have you had to exclude GCA?
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Nothing Poop, when I ask for a biopsy or even a PET scan he said it would turn out false negative due to the steroid treatment from Dec 2019 when I was only being treated for PMR and started on 15mg. So it's all guess work really. Perhaps I should email his secretary and mention wouldn't it be more prudent to stay on 30 mg for four weeks and not two...just feel awful asking as he's the expert.
If it works it's fine - but it is very fast. Does that mean he's decided it isn't GCA? Because that is the only reason I could see for reducing at that speed.
It is a CLINICAL decision in that case - based on history and symptoms and response to pred. But YOU have to ask HIM for what his thinking is. We can't read his mind any more than you can.
I just don't want to seem as though I'm contradicting his judgement. He will say 'who's the doctor' you or me. Must add though, that under both arms (bingo wing area) some discomfort from there for the past few months, but nothing really to speak of.
Yep. that five minute consultation on the 'phone last night will cost me £100, like it did last Friday. I will ask him. I've just emailed his secretary to ask why 2 weekly and not 4.
Holy ... sorry, I almost typed something indelicate - 100 for a five-minute, unhelpful consult?? That's obscene. Does the dr have ANYTHING to go on? Sed rates? Other lab work? I agree with the others who state that he has an obligation to explain to you his rationale.
My ESR/CRP both came back normal...but that doesn't count for much I don't think as I'm still getting a painful jaw when I open my mouth wide and massage those areas. I'd have thought after being on 40 mg for 2 weeks and second week of 30 mg the jaw would have settled down by now....if I have got GCA that is. Evidently, it's the Serum level that are found to be more sensitive than ESR...no idea what mine are or if they've been taken. Yes, £100 is expensive for a few minutes consultation on the 'phone but nothing else I can do now as it was me that went down the private route.....glad I did now with everything that's going on. It's only money !! I read that GCA is Vaculitis and there is a risk of stroke. And mortality isn't that good either with vasculitis. I've just taken my 30 mg steroids and eyes blurry again. They're good first thing in the mornings before taking them. I was going to reduce today by 5 mg, but too scared in case GCA is lurking !!!
I know, mine is very weird and wondering if I'm tensing my jaw muscles. Rheumy told me that jaw claudiaction isn't usual for GCA without other symptoms, but not unheard of, as it seems the only symptom I have...feels achy. What do you think about me tapering tomorrow instead of next Saturday by 5 mg making my dose 25 mg for 2 weeks or even a month, he's leaving it up to me. Just hate the blurry eyes once I've taken my morning dose that continues until I go to bed.
It is probably worth trying, They have in the past advised against splitting the dose in GCA - but a study found it didn't actually make any difference to inflammation control. It does work for people with GCA whose symptoms return before the next dose is due.
This is the part I really don't understand. Obviously my body still has inflammation even though markers are now back to normal ESR being 5 and CRP 6...both down from original state of 515 back in Dec 2019, to the most recent blood test which were 17 and 22, then another showing 5 and 6, so happy with that. It' s the Serum levels that are found to be more sensitive than ESR.....not sure if that one was taken. I found this piece of info on internet about GCA.
Thank you ladies. It's really hard to know what to regarding the tapering. I'll try the 30 mg starting today and see how I go for the next two weeks, if any problem I will increase by 5 mg. Hopefully, I'll receive his email on Monday with how he wants the taper to go. He was so very kind and said he thought I was doing well. When I ask him about my results of ESR/CRP being 5 and 6 and said does this determine GCA he said no....such a complicated disease to get on top of. I can only try and see for myself I suppose......just don't want the inflammation to go up again.
Horrible time for everyone with health issues and the blessed virus, particularly those suffering cancer. So, people are now panicking by getting their surgeries to write out prescriptions earlier than need be (didn't think GP's allowed this) These people like the stupid ones that panicked and cleared all the supermarket shelves are now doing it to the pharmacies. So there will be shortages coming into the chemist shops now, so many of us will dip out on medication that is really needed. My husband being one of them, a Type 1 Diabetic and in kidney failure. The last prescription he ordered we had trouble getting the cassettes for his Accu-Chek mobile blood tester. Hope this doesn't happened again when he next puts his script into surgery....why are people behaving like this. We've been told there is no shortage of food if people act sensibly and the same with medicines. So surprised at doctors for allowing people to order early when it's not necessary.
I'm getting concerned now for husbands his next eye injection on 7 April at the hospital, he has macular degeneration too. Just hope the clinic has been scaled down and not the crowds there were when he had his last appt. He will have to wear his face mask and gloves to protect himself.....he doesn't worry about this sort of thing as much as I do....men eh !!
Have a nice weekend as much as possible with being stuck in-doors. Weather not so good today, which is such a pity as it's been nice getting out in the garden, even to just hang out the washing for the first time the other day.
No, both my husband and myself have received notification that we have to stay in, where we've been for the past 3 weeks now. Husband able to go into garden, sadly, I can't as pollen too high for the next 2 weeks. Today ad tomorrow absolutely glorious weather.
You’ve been. Given some good advice Ann and I would agree that asking him to explain his strategy and why isn’t criticising him. It’s just asking for clarification. As also pointed out - you are paying him so he needs to make himself clear rather than you having to second guess him. X 💕
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