RE: Re: Actemra

July 21, 2011

I thought she was asking if we took someone named Ben somewhere..I do not know a

Ben.. So, I didn't take him!!

I too am on Actemra, and though I am not feeling ''great'', it has been about

one year since I flared up!! So anything that keeps me out of the hospital is a

blessing..

I do not take benadryl before this though..

.. Before Alli's message shortened out, I think she was going to ask if your doc

had you take Benedryl or other antihistamine before or after the treatment.

Dr. Harry is on Actemra, I believe. Last I heard he was doing well.

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July 22, 2011

I've been taking Actemra for over a year now, and as Tom says, they usually give

a little benadryl before the infusion to prevent allergic reactions. Also, the

last two times I've been infused, they slowed down the rate of the

infusion...when it used to take about 20 minutes, it now takes about an hour.

This was dicatated by the manufacturer. Other than that, the Actemra has helped

me a lot. My rash is gone now, and I've been able to reduce my prednisone.

after being on between 20 to 35 mg of prenisone per day for over 4 years, I'm

down to 12 now. I am tired all the time, but the dr says that's because of

prednisone reduction.

I have a question....is anyone else having problems with blood clots? I've had

2 pulminary embolisisms in the past, so they put me on warfarin..and now they

think they're seeing a clot on the left ventrical of my heart. after the MRI

that found that, we did an EKG, which saw nothing. So today I'm going in for a

TEE. With any luck, maybe it was a fluke on the MRI. Cross your fingers. I'll

let you know the results, but I'm real curious if anyone else has experienced

the blood clots. Good luck on your Actemra!

July 22, 2011

Thank you so much everyone for your feedback. I am always premedicated before

every treatment because I have had allergic reactions in the past. Before

Actemra I was given 2 Benadryl, 2 Tylenol and IV Solumedrol. I am just debating

on trying a third treatment or not. My doc says that I am " running out of

options " so not sure what to do.

Love and Care,

Angie

>

July 22, 2011

Regarding Actemra infusions; It worked well for me for about 6 to 12 months. By

the 15th month I had a disabling flare and my rheumatologist switched me to

Rituxin. I had no side-effects that I noticed on Actemra just decreasing

effectiveness over time. I began the Rituxan in mid-May and so far it has been

the best at relieving most of the disabling Stills complaints. The ongoing pain

every day stuff remains and occasionally worsens with activities or stress but

still Rituxin for me has worked well. The next infusion is in September.

Harry S.

To: Stillsdisease

From: tototoo42@...

Date: Thu, 21 Jul 2011 21:43:02 -0400

Subject: Re: Re: Actemra

I thought she was asking if we took someone named Ben somewhere..I do not

know a Ben.. So, I didn't take him!!