tapered down to 7, now taking 7 one day and 8 the next and my shoulder hurts

[Paulagcl]

first time I've had pain in months

[DorsetLady PMRGCAuk volunteer]

As we've said in previous post return to 8mg and see if that helps... if not [after 5-7 days] you may need to treat as a flare - see this link - and back down to 8mg not 7 or 7.5mg.

healthunlocked.com/pmrgcauk...

[Paulagcl in reply to DorsetLady]

I need to remember that the reality is that given that I’m also taking the biologic, I’m on a higher dose of medication than it sounds like from just prednisone but divided between two different ones. The highest dose I’ve taken from the start of prednisone is 10 mg. I started Kevzara almost right away. Anyway, it is a sunny California day so I am going for a walk!

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

Enjoy… flippin’ miserable here at moment, but did get a walk in the dry earlier….

[PMRpro Ambassador in reply to Paulagcl]

The Kevzara MAY get you to zero - or it may not. It is an IL-6 antagonist that works slightly differently to Actemra. However, there is more than one mechanism creating inflammation in PMR and GCA - Kevzara and Actemra only work for the most common, the one involving IL-6. They have absolutely NO effect on the other underlying causes.

[Paulagcl in reply to PMRpro]

Right. the idea is to get down as low as possible on prednisone but there's no one magic bullet. What insurance will cover to some extent will drive which drug is chosen, is what I am learning, at least in this country. Actemra is approved for GCA but not PMR in general -- we have many different ins companies so it's complicated, and regulations are different from state to state on top of it.

[Paulagcl in reply to DorsetLady]

For example, in California (which is better than most states), only one company covers Kevzara if one is on Medicare, and I don't have my ins through that company so I am enrolled in a program sponsored by the drug company and they pay for it, though I have to reapply every few months. My husband needed a drug that was covered in Oregon only if he had a drs office inject it. Where we had lived before, in Indiana, he could inject it himself. There was no medical reason for this difference, just a state law. Seems crazy, no? I am lucky to live in LA where there are three highly regarded major medical research and treatment centers so I had a choice.

[piglette]

Under 10mg I dropped 0.5mg every month. I was not up to 1mg. Give it a few days it might be the steroid reduction that is causing it.

[Paulagcl in reply to piglette]

Probably is a combination of both. This is my fourth day having dropped .5 mg and I guess it is what I see called the deadly fatigue. Obviously people get through it for months, but right now I can't imagine it. I need to get a grip, I realize, and cope with it like everyone else does.

[piglette in reply to Paulagcl]

The deathly fatigue is a bit of a downer.

[Paulagcl in reply to piglette]

yeah, no kidding....

[Bcol]

Once the present problem/flare is under control would suggest using one of the DL tapers, I use a slightly modified five week one and only come down in 0.5mg at a time. Even then don't assume the five weeks is set in stone, if you don't feel right at the new dose don't start the next taper until you do.

[Zebedee44]

Splitting the dose has always worked for me and removed early morning pain. Take 5mg in the morning and the rest at bedtime, reducing the evening dose when you taper on a slow taper plan over several weeks but maintaining the 5mg morning dose. This might not be the best way to kick start your adrenal response but helped me with lingering PMR pain.