Feeling Upset

[saunders123]

I have had G C A since Dec. 2014 with terrible problems including sepsis, hair loss and loss of hearing plus all the usual side effects.I will be 80 years of age this year I have felt ill for most of this journey. I started on 60mg pred. i have had a few flares on the way at 30mg and three at 10mg the last one being on Friday24th March.At this stage I was on D S N S method I had reduced to old dose 5mg for one day new dose 4mg for 3 days thought I was doing so well, then It suddenly struck on Fri. morning I rang my G P and was told to go up to 10mg. How long should I stay at 10mg and the best way to start a reduction again.I have my blood checked every three weeks. Ten days previous to my flare my E S R 14 and C R P 3 both Slightly up for me Normally C R P under 1 and E S R Around 12. Any advice appreciated thank you so much. Jean

[PMRpro Ambassador]

If the 10mg is enough to manage things stick there until all the symptoms have settled down and the blood markers are back to what is normal for you. It still isn't a particularly high dose so while I know it is disappointing don't rush to reduce. But then - same procedure as before really.

Theoretically you could drop back to 5mg quickly if you feel it was just the trying for 4mg that did it but it may be an increase in the activity of the underlying autoimmune part of the illness. Perhaps once your symptoms and bloods are looking good (after not more than a couple of weeks at most though) you could try 7,5mg and see how you feel.

[saunders123 in reply to PMRpro]

Thank you so much for your advice.

Jean.

[altywhite]

Sorry you are so upset Saunders123, it's an awful feeling to think you're taking 6 steps backwards. I'm not the one for advice..there are brilliant people on here for that but I hope I can support. I'm almost 2 1/2 years into my ...."process"..shall we call it?? I had a tough time before Christmas when I thought I'd got down to 7 or 7.5mg (can't remember now!! isn't that awful??)..anyway..not so!! I ended up back on 15mg for a short while and have now managed to get to 10mg again. I reduced slowly and didn't reduce further until I felt ok. So far I am ok but am not reducing again until next month, and then only by half a mg ...if I still feel ok. I used to really struggle with the time span of things until I found this forum. It has really helped me to come to terms with the process. Take it easy. Linda

[altywhite]

I've just noticed your post was 3 months ago...dozy me!! Hope you're feeling much better.

[saunders123]

Thank you Linda. I was wondering if you live in Altrincham, and if so would you like to meet up at some stage, We live near Stamford Park. Looking forward to your reply

Jean

[altywhite in reply to saunders123]

Hi Jean, yes I do live near Altrincham. I'm away at the moment but I will send you a private message when I'm home.

[saunders123]

Enjoy your holiday Linda, looking forward to hearing from you

Jean