Other Actemera users

[mpl615]

My wife's PMR started after she thinks she past a kidney stone ( blood in urine and pain she took an antibiotic and this cleared up. Prior to that she complained that her morning walk had become more difficult. She was put on prednisone for fibromyalgia or PMR or both the first doctor wasn’t sure. She continued pred. And reduced once under 5 mg pain stated to come back. Was put on embrel and reduced pred. To 0 . Found a new doctor and was put on Actemera injections has been on this drug since Feb. she has a some good days but more bad days. Cholesterol has gone up. Yesterday woke up and had blood in the urine again was put on antibiotics blood in urine stopped by end of day and pain was gone this morning. Has anyone been on Actemera long term and has relief from PMR?

[PMRpro Ambassador]

If you use the search function at the top right of the page and type in Actemra you will get a list of the posts about it.

There are several with GCA who are on it but fewer with only a diagnosis of PMR as it isn't really approved for PMR and is a very expensive alternative to pred.

However - if your wife was already complaining of difficulty walking BEFORE the renal problem I doubt you can blame that for the PMR. It may have made it worse, but it was probably already there.

[mpl615 in reply to PMRpro]

Thanks

[SheffieldJane]

Hi, Fibromyalgia does not respond to Prednisalone. I am wary of that readily given diagnosis. It was said to me by my first Rheumie but never mentioned again. I have followed a predictable path with PMR.

I can’t help feeling that if your wife had been treated conventionally with Pred for PMR and a very slow taper, she would be better than she is. However, she clearly has other conditions to contend with because Actemra is never prescribed lightly. I wish her well it sounds rotten.

[GOOD_GRIEF]

Blood in the urine and kidney stones are not symptoms of PMR.

Your wife needs to contact her doctor right away to report the symptoms. Kidney stones are no joke, and if left untreated, can cause not only serious renal infections but renal failure. With everything esle to contend with, losing a kidney is not an option she'll want to explore.

[Terry615]

I’ve been on Actemra for 9 months. Did monthly infusions for a few months, then switched to self injecting 162 mg subcutaneously every two weeks. I’ve had zero side effects from Actemra and it’s enabled me to totally get off methotrexate and down to 4 mg pred daily...my goal is to get down to O. I’d been dealing with this prob for three years, having flares no matter how slow the reduction of tradition meds, and had significant side effects from them. I don’t think anything totally makes all symptoms disappear, but mine are quite minor now and I’m grateful my doctors and pharmacy worked with Genentech to make it affordable. I wish you and your wife well. It’s worked great for me.

[Jim-CJ]

Hi mpl615,

My wife has been on Actemra for 10 weeks and has slowly tapered from 20 to 13 with no side effects. She has GCA and has been on prednisone for over three years. She has weekly injections and it is a blessing to have Actemra.

Wish You The Best,

Jim & CJ