Actemra

Thanks for the direction. I've found quite a bit of Actemra discussion on th Health Unlocked site. 

Thought you would - have you joined? See you there!

Thank you Charles.  I will certainly remember that about trying again if they turn me down the first time.  I go back and forth whether to try it at all but I have had very little success at reducing my dose of Prednisone and feel like perhaps it could give me a chance to do so. 

You say you have had little success at reducing - how have you gone about it?

I use the DSNS method from here on the forum. I just don't seem to have much success at it.  

Are you doing it correctly? It may seem a stupid question but one lady who said it wasn't working was not doing it correctly! 

And what dose are you on? Where do you have problems?

Although there was a time I was confused about it the light finally came on and I am quite sure I do it correctly now 😮 I am back taking 20 mg daily. i have never made it below 16. As I decrease I just get worse symptom wise little by little and ultimately end up back at 20 so I can function. It's discouraging so I thought perhaps trying Actemra (if possible) might be a solution. I was on MX for about 8 months but still didn't have success with the Pred reduction. I was diagnosed in July 2015. Started at 15mg which like others seemed a miracle. Ended up at 20 after Dr reduced me too quickly. I didn't know any better then. 

Have they considered that even if it might have been PMR then it may not be now? About 1 in 6 patients who get a PMR dx to start with have it changed at some later point. Do you have joint pain or back pain that is worse in the early hours, say 1 or 2am?

I have no joint pain or swelling at all and very little back pain.  My symptoms remain pretty much the same as when I was diagnosed. Shoulder, hip and some nexk pain.   I have hip bursitis which I know often runs alongside the PMR.  I get injections once in awhile if it gets too much out of line.  The

flu-ish feeling and the aches/pains is what starts to return when I reduce. Just little by little it increases as I reduce the Prednisone.    When I did work on going to 16mg while using the DSNS method  I began to wake  up between 3 and 4 in the morning and the fluish feeling and achiness would be much more intense much like before I was diagnosed although not as severe.    I get up and go downstairs to my recliner....take my Prednisone and try to sleep awhile again.  I knew I was getting worse each day though.  One can just tell!!

Waking at 3:30 or so is a ritual with me now although since I'm back at 20 I wake up but not feeling like that.  Even at 20 mg my muscles ache some although I just live with it.  I am assuming most PMR sufferers do put with a certain amount even while on the Pred. 

Early on my PCP did say once to me "you have Fibromyalgia"....(.my pain was increasing again as my RA Dr was having me reduce the Prednisone)  I said how do you know that...I'm having the same symptoms I've always had...anyway they found out my Sed Rate and CRP levels were rising, both agreed I should increase my Pred dosage back up, and they've never said anything about it again. 

I wouldn't be looking into Actemra if I was able to at least get down to around 7 mg of Prednisone.   

 

That's fair enough and at a guess you may be a 50% person - you are only absorbing half of your 16mg of pred so getting the effect of 8mg where another patient with a 90% bioavailability is absorbing more like 14mg - obviously they are getting a lot more effect. But too many doctors assume everyone gets the same benefit from a given dose  - we don't.

I did switch from Prednisone to Prednisolone ar one point during this past year to see if that would make a difference but my stomach wouldn't tolerate it so that ended that. Thanks again for your input. I'm actually headed to my RA Dr today and will see where the Actemra venture leads me.