from Crohn's board, now with RA, have Actemra question

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snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 7/2/2010 4:35 PM (GMT -7)   
Hi to everyone, I am new here, newly diagnosed after suffering for about six years. I also have Crohn's disease, so the doctors thought I had Crohn's related arthritis, but turns out they were wrong. I've been reading lots of posts here and it seems very welcoming and informative, I have a question about Actemra. I have failed Humira and Simponi when tried for my Crohn's disease, now they started Actemra at a small dose because there is a small risk of bowel perforation and they are keeping a close eye on this.... anyway, I am two days post infusion and the fatigue is sky high... has anyone else had this infusion yet and can you say what your reaction has been? I've been tired from the actual disease of course, but not to this degree. Thanks so much in advance!

Marla
Crohn's, Enteropathic Arthritis, Enthesitis, Daily Migraine

Prednisone, 6MP, Entocort, Pentasa, Topamax, Effexor, Vicodin,

Sed rate sits in the 70's and can't seem to get it down


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 7/3/2010 10:20 PM (GMT -7)   
Welcome to the RA forum Marla smilewinkgrin   sorry you have to be here too though.
I havent heard of that med before, not sure if anyone else on here has, but hope someone comes along soon to help answer your question.
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


bigc
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/17/2012 12:30 PM (GMT -7)   
Marla, I realize that your post is quite old. How successful was your use of Actemera? I too am contemplating use of the same drug.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 281
   Posted 9/18/2012 7:45 PM (GMT -7)   
Hello!!

I was on Actemra for a year since I've almost run out of drugs. Actemra only gave me a 20-30% more relief which just doesn't cut it for me. I'm usually tired. I may get one or two bursts of energy to get things done with some vigor. It's hard to say how a drug will work for another Person until the Person actually tries. Best of Luck and let us know. Good news is always welcome. :)
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Raynauds - other stuff

Folic Acid - Fosavance - Tramadol - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Salbutamol - Actemra - Prednisone - Humalog - Fluconazole - Systane Ultra - Aspirin(81 mgs.) - depo Medrol injection - One A Day Multi Vit. - Cod Liver Oil Capsules - other otcs

bigc
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/18/2012 8:32 PM (GMT -7)   
Thank you for your reply. So I guess it is safe to say that, as a treatment for your Crohn's, Actemra did not give you much relief...or was the Actemra more for your arthritis...I am not sure.

Also, did you notice any other benefit like less inflammation in the colon, better digestion, weight gain, etc. or was it pretty much a wash? Thank you again for sharing.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 281
   Posted 9/18/2012 10:11 PM (GMT -7)   
Oh sorry. To clarify, I was on Actemra solely for RA. I do not have Crohn's.

I was on Orencia for 1 1/2 years before Actemra and the Orencia shot my inflammation up plus it made me irritable. Then I went on the Actemra and my inflammation in joints dropped down to 1 and then to 6 and stayed there but it didn't help with the pain much, as I mentioned, which I don't understand. I did gain some weight about 7 pounds on the Actemra. With the bio I'm on now, I've dropped the 7 pounds and back to 115. :( We won't know for a while yet if this one is going to work for me. But that is my experience. Actemra may work better for you, if you choose it. It's trial and error unfortunately.
You're very welcome. :)
Type 1 Diabetes - Severe Rheumatoid Arthritis(RA) - Asthma - Raynauds - other stuff

Folic Acid - Fosavance - Tramadol - Pantoloc(as irritation preventative) - Levemir - Indomethacin - Salbutamol - Rituxan - Prednisone - Humalog - Fluconazole - Systane Ultra - Aspirin(81 mgs.) - depo Medrol injection - One A Day Multi Vit. - Cod Liver Oil Capsules - other otcs
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