Morning all. As advised, taking it nice and slow with the pred tapering by gradually reducing from 35mg to 30mg. Finding it difficult to tell whether I feel okay or not though before progressing further . Having a blood test next week to check the inflammatory markers. Meanwhile, I am off the antibiotics for the bladder problem but been called back to see the GP, so still problems there which must influence my general health.
Hospital wrote to cancel my next appointment with the Rheumy set for April. Fair enough, can understand issues can arise. Bit taken back though that I am now booked in for September! Bit of of a wide gap there, methinks!
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Kael-gca
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Good luck... don't confuse steroid withdrawal symptoms with a "flare," as it easily done!!!! give yourself 5-7 days after reducing... if "yucky" symptoms go away... they were just withdrawal pangs! If they linger, you may have reduced to quickly or by too much.
Have another look at DorsetLady’s helpful guidance in response to your first post. You are still in the early days of GCA and on a relatively low dose for it. Don’t be afraid to rest at a dose for a few weeks until you are really sure that the inflammation is under control.
If you have a switched on GP and the support of this site, you could be ok without the Rheumatologist’s input. If your GCA symptoms suddenly come back, then I would go to the emergency room of a hospital. Take it all very steadily. This is a significant, serious disease.
I really don't think that it is appropriate for someone with GCA to have to wait that long for follow-up. Do you at least have access to a rheumatology specialist nurse? Were you seen more than once at the start?
I will add that I did 40 mg for 28 days and it will be the same for 35 and 30 mg. Had the GCA confirmed by Rheumy Dec 2018 after a year of PMR and yo-yo steroid plan.
If you are finding it difficult to tell whether you feel okay or not......then why not? What is still happening to make you think you’re not okay?
Think you need to get that fixed in your mind before you consider tapering.
You can’t expect to feel as you were pre illness, but you should still feel as good as you did on the inital dose. Do you?
Like PMRpro says it’s not appropriate you should have to wait so long for a Rheumatologist’s appointment especially if it’s your first. I guess they have a problem in April, and have just block booked everyone for September. Not good enough, you need to contact and say this is not run of the mill stuff - I need a quicker appointment.
My initial dose of 70mg made me feel amazing, I couldn't recall when I felt that good even before I began getting the symptoms for GCA. I followed the rheumy's advice and began reducing the dosage as mentioned in earlier posts. This did lead to a flare up which was immediately obvious to me as I started getting the flu like symptoms and the markers had risen again. Thinking about it, I 'stabilised' when back on 40mg but my markers were still on the high side. The Rheumy knew this but advised dropping the dose on a timetable so I should be on 20mg now. However, I felt more comfortable with your previous advice on tapering and been gradually tapering between 35mg - 30mg. I don't feel I am having a flare up but for periods of the day I feel lethargic and thick-headed. I am guilty of trying to rush the reduction so all the comments I have received makes sound sense. Nice and slow! Interesting to see what my markers say next week. I really appreciate your advice. Thank you.
Thanks for more info - just as a matter of interest how long did you stay at 40mg, sorry if you’ve already told me.
Maybe a bit longer at that dose would have helped, and then (in my opinion - and I know Rheumies DONT agree) a month at each dose really is the way to go.
Fortunately (or unfortunately whichever way you look at it) my GP knew nothing about GCA, so she, I and the guidelines got us through the reductions. I didn’t see a Rheumy for 6 months, and by then we had got into a routine, so he just left us too it. After initial reduction direct by Ophthalmologist (diagnosed by his department after sight loss) we did reductions on a monthly basis depending on my symptoms (or rather lack of them)- corroborated by my markers.
Result - I got through with no relapses. I’m sure many Rheumies would hold their hand up in horror saying I took too much Pred - and maybe I did, time may well tell. But my sojourn was easy compared to many I read on here, and I know the reason why.
I know the docs don’t like us on higher doses, and I understand that having been there, but to be honest if they reduce us too quickly it just defeats the object.....all that happens is that you go up and down!
Your symptoms don’t sound like a flare, and of course you can’t expect to feel marvellous every day, but don’t let them escalate.
Just monitor your markers, but don’t get paranoid, unfortunately they can be influenced by other things (which muddies the waters), and your symptoms could be linked to that - do you feel coldy or flu-ey?
I stayed on 40mg for 4 weeks and then advised by Rheumy to go to 30mg. I read your earlier post and it made more sense to be cautious so went 35mg for two weeks and now trying odd days with 32.5. Not feeling coldy or fluey so far.
I'll give more thought whether there is a pattern to this. Today's advice has made me less concerned and confident about how to proceed. Now, just want this miserable weather to improve! Enjoy the weekend.
I had a similar experience when my appointment for September 2018 was changed for one in March 2019. This seemed ludicrous as I definitely needed advice about my pred levels. I rang the Rheumatology 'gofer' who told me that Rheumatology was no longer considered 'acute' but he'd found a cancellation and he could give me an appointment in December. He then advised me to ring again in a couple of weeks to find if there was another cancellation. I did so and was given an appointment in early October, only 9 days after the one that had been cancelled originally! I was then given another appointment at the end of February which, so far, hasn't been cancelled.
Fair enough, but I do wonder about people who aren't confident on the phone, or who don't speak English too well or are simply not in the habit of questioning authority. I was taking 15 mg of pred daily in September. Since my October appointment I've successfully tapered to 10 mg. Presumably if I'd just held on to the March 2019 appointment, I'd still be taking 15 mg unnecessarily.
Same thing happened to me, I think it is because they leave six months between appointments and that is how the computer system works even if the appointment was cancelled! I only have PMR so it was not the end of the world but as you have GCA I think I would make a bit of a noise about it.
I was under the impression that if the hospital cancels the appointment they are supposed to fit you in asap - of course, if YOU have to cancel for any reason bar death it is entirely your fault and your problem ...
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So, how am I supposed to feel?
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How do I get a synacthen test?
Weak knees, How good should I feel before I taper?
