flying by the seat of my pants

[Plains]

I have posted many times recently about my experience with symptoms of GCA. As many of you know Rhumy’s know only so much and think everything is just handled in a short time. I have been dealing with , in my opinion GCA for over a year.. My Rhumy says we have to teat as GCA while he is not convinced it is… I am because of this site and my symptoms. I have been on a roller coaster for the past several months going up and down increasing prednisone based upon my feelings in my heard, same location each time. The Rhumy is no help tells me to just keep upping my prednisone until I fell better then reduce. It’s not working!!! I am at 13 mg right now and no pain, I guess I will stay there for a well and then start reducing a half every two weeks. I don’t want to keep going higher than lower only To have the pain comeback! I am so stressed out about this and feel so stressed because of in my opinion a high dose my body is not used to. I don’t like the hyped feeling from it.

I am totally at a loss and feel so unsupported by my doctors… good luck getting a new one in 6 months.

[Bcol]

Good morning, sorry to hear of your woes and good that you are pain free at the moment, rather than seemingly going up and down, why not try staying at 13mg, which seems to be working for at least four weeks and then using one of DL tapers (see FAQ'S for plenty of tapers) and reducing at 0.5mg every four (minimum) weeks. Might sound as if it would take longer, but if it stops the yo-yoing then it will probably be quicker and more effective in the long run.

[Plains in reply to Bcol]

I totally am going to reduce a 1/2 mg. I am just so stressed out from this drug and how it makes me feel., I was at 1mg several months ago. I hate this!

[Plains in reply to Bcol]

Thank you

[DorsetLady PMRGCAuk volunteer]

I think one of the reasons you feel ‘hyped’ is the constant changing of dose…would suggest you stay 13mg for at least a month before you even try and reduce.

And then as Bcol has suggested try using one of the slower tapers - it’s easier on the body especially if you are one of those that react more adversely to changes in dose.

Even with Actemra added in [which works better for some than others] at only a year in your GCA is still very active…. and why does Rheumy think it isn’t that?

[Plains in reply to DorsetLady]

Thank you. I will stay at 13 for a while, then start reducing by a half every few weeks. He never said why, just that we have to treat it as if it is.

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Ok…

[PMRpro Ambassador]

As the others have said - yoyoing tends to create problems. It is important to get stable - and creep down with changing doses, reacting quickly if you flare. That is the only time quick should figure!

Does your rheumy understand how Actemra works? It means the sed rate and CRP are meaningless with regard to disease activity - it stops inflammation being created in tissues, not the underlying disease process. And for half of patients it doesn't get them off pred altogether - there are at least 3 different underlying causes of GCA inflammation and Actemra only works for one of them. The other two require an ongoing lower dose of pred. And that is probably a critical point for YOU.

[Plains in reply to PMRpro]

I mentioned to him what I understand about Actemera and he seemed to know about it too. He has not checked my sed rate of CRP in over a year knowing the numbers would be low. He is retiring so I am looking forward to meeting my new doc in January. I did reach out to him last night though my portal letting him know what is going on. Thank you for responding.

[PMRpro Ambassador in reply to Plains]

That's a relief - so many don't get that bit! Hope the new one is good.