Got down to 3.5mgs Prednisolone after 3.5years-Update

[GCA1947]

Dear Sue

I like your new photograph.

Many of my fellow sufferers sent nice comments when I posted that I was experiencing my first flare having reduced from 60mgs to 3.5 in 3.5 years.

CPR jumped to 17 from 11 so I increased my Prednisolone from 3.5 to 5.0 on 02/08/17 and stayed at 5 mg for 13 days and tested blood on 15/08/17 when CRP had come down to 12, but all the symptoms won't stop.

On 17/08/17 I increased Pred. to 6 mg to see if a little more would help. Initial headache and feeling of stuffed head has stopped Jaw ache and difficulty chewing start up at mealtime every day.

Got ache/soreness at back of throat General feeling isn’t helped by 12 migraines since start of August. Rheumy said I could go up to 7.5 mg but only for three days. I can't contact him until Monday so I'm pushing up to 10 mg over the weekend see if a big boost will do the trick. I won’t tell him or my G.P because she’s so difficult to contact. I tried on Thursday morning to ring Reception and after listening to the ringing tone for 30 rings someone picked the phone up and promptly dropped it back into its rest cutting off my call.

Rheumy’s attitude is odd. Talks about getting me down to zero but no mention of the inflammation causing the CRP level. Last time I was on 10 mgs was in September 2016 and my CRP was 10.

My CRP is invariably in double figures it’s only been in single figures 5 times in past 12 months and never below 6. Previous GP said acceptable range was 1-5. Results tell me that inflammation is still active. I think I will suggest to Rheumy that depending on blood test result on 12/09/17 I will either reduce 1 mg or stay at 10 for 28 days more and then test again. I normally have blood test every 28 days.

Some good news. Hospital visit yesterday to update on varicose veins in right leg and blockage in left calf. Usual consultant on holiday so I got his side kick who decided that little benefit gained by operation, so we’ll try elastic stockings instead.

Best wishes to you

Colin

[DorsetLady PMRGCAuk volunteer]

Hi Colin,

Thanks.

From a merely personal point of view would say that your CRP readings and symptoms are certain indications the GCA is still pretty active, so inflammation not under control by your level of Pred.

After 6 years of reading posts I still don't understand the way some Rheumy's work. Surely if us mere mortals can work out the correlation between symptoms, blood tests and level of Pred they can! Too many seem to fixated on the "2years duration" of the illness and getting down to zero. Unfortunately, as well all know - life ain't like that!

Hopefully the increase over weekend will work for you, and at least maybe if you're not thinking about operation that may help as well.

I had my bloods done monthly, but only if they were okay, and more importantly, if I had no symptoms, did I reduce. But I didn't have a Rheumy trying to rush me!

I know my GCA lasted 5.5years, and from others on here that is not unusual - think the powers to be should now be thinking that perhaps 4years is nearer the mark rather than 2.

Have a good weekend, take care.

[PMRpro Ambassador in reply to DorsetLady]

I think the real experts do. It's the less able who can't be bothered to keep up to date that don't. It says quite clearly in guidelines/articles all over the place that while the tapers are arranged around about two and a half years it must be tailored to the patient's requirements. They appear never to have internalised that aspect!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

The trouble is I guess on a forum like this we get to hear more of the horror stories, than the good. But it was ever thus.

We all know there are good doctors out there, I've met many of them as patient and patient's spouse but as you say there are a few that seem happy to coast along.

Hope all's good with you and David at the moment- "good" being relative of course.

[PMRpro Ambassador in reply to DorsetLady]

It all kicks off on Monday...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Good luck then. Will be thinking of you!

[GCA1947 in reply to PMRpro]

Dear PMRpro

It's obvious to me that the original low dose of 3.5mg was too low and that now I must find the new lowest dose that holds the inflammation in check. I'm on 10mgs over this weekend and will probably hold it there until 12/09 when my next blood test is due. I agree that getting down to zero isn't going to happen for me. If the CRP drops right down into the acceptable range of 1-5 then perhaps maybe. I have absolutely no problems with staying on a small dose of steroids for the rest of my life Janet was on 5mgs Pred. for 51 years

Best wishes

Colin