I am new to the site and pleased to be in touch with everyone.
One question I have - It is 15 months since I was diagnosed with GCA, I have done ok I think, now on 1mgm of pred.
Is this too low?
Should I stay on it for another one to two years?
How do I know when to try stopping it?
Thank you
If you are on it at that level and the symptoms have not returned then yes, it is probably OK. The pred dose is only too low if you have symptoms. In the case of GCA I doubt 1mg is doing much at all - and it certainly isn't causing much in the way of side effects. Some people feel it is a sort of safety blanket - but it is in PMR that 1mg often appears to be doing something!
If you are not having problems with pain your dose should be fine. Have you talked to your rheumatologist about it?
I don't have a rheumatologist. I saw a Consultant Neurologist at the start of my treatment but other than that I have just been seeing my GP, who had to be told by one of the other partners what my problem was. Do you think I should ask to see a Rheumatologist?
Hello Betty and welcome!
You have done exceptionally well to be at just 1mg of Prednsiolone within 15 months of being diagnosed with GCA. I have had contact with a couple of ladies for whom GCA has gone into remission in just around the two year mark but, so far, you are the first I have come across to be considering coming off treatment after just 15 months.
Having said that, if you are completely free of symptoms; are someone who having had raised markers of inflammation at diagnosis has found that repeat tests have been at normal levels for a considerable time; and you are not experiencing fatigue, then there is every possibility that your GCA has, in fact, gone into remission.
You haven't said for how long you have been on the 1mg dose but if it is just a short time then, if it was me, I would continue it for several months yet, especially in view of that fast recovery. Despite the view of some medics, 1mg does have an effect, as does just half a mg - in fact, I remained on the 1mg dose for very many months after being on steroids for over five years for both PMR and GCA
Do bear in mind that our bodies can take a year to fully recover after coming off steroids - all sorts of hormones need to get back into play.
Another fact to bear in mind is that those people who manage to get off steroids in a very short time appear to be more at risk of relapse. Lots of good luck wishes whichever path you choose.
Sorry Elizabeth - I really am a Betty not an Elizabeth, I always wanted to be Elizabeth.
I started off on 40mgms. I think you have done well getting down to 10mgm from that high dose.
Thinking back I had jaw stiffness, discomfort and pain about a year before. Then in the Sept before I went on holiday to Croatia I had pain and stiffness in my neck and shoulder. It was whilst I was in Croatia I woke up during the night with an excruciating headache which didn't let up until I eventually started on preds.
That was an awful time my GP gave up on me after doing everything she could think of. It was only because I decided to see one of the other partners that I found out what it was. I was very lucky. After I read Kate Gilbert's book I decided to try her suggestion and go up and down ie. if I was dropping from 8 to 7 I would do 8/8/7/8/7/8/8/7/8 then continue on 7. Whether this has made it easier I don't know.
I started on 40mgms and now down to 1mgm in 16 months.
Symptoms a crippling headache I think I banged my head on the wall once it was so bad. 10 x 50mgm a day never touched it - told off about that but not given an alternative at the time. I also wasn't able to use y brain properly.
Another reply!!!!
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