PMRGCAuk

Actemra

Good morning!

I wanted to report about my Actemra treatment and how I feel after three weeks. I took my first injection on December 21, 2017 for GCA and felt already much less fatigued the next morning. After six days my chronic cough disappeared. I'm very happy to report that I'm still doing great, no fatigue, no pain, no cough. Sometimes I still have this stiff jaw feeling, but that is all I notice. I consider myself very lucky. Going for blood work tomorrow. Very curious to see how the inflammation marker will be. I'll keep you posted, Monika

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Thank you for the update..so good to hear that Actemra is working for you.

I have a question about Actemra that Im curious about ..can you travel abroad while you are on Actemra? Ive taken Methotrexate from Spain to the US and the UK but It doesnt requiere refrigeración..

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Good to know. Thank you for sharing, Monika

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Thanks for the update. Keep them coming. So happy to hear your good news to date.

Are you also on Pred at this time? If so, what dose and what kind of taper? Does your doctor say how many infusions and for how long ?

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Now I have more good news, very, very good news.

I had my monthly bloodwork done this morning and for the last year my CRP was always elevated. Even with Prednisone and Methodrexate. Last month, before Actemra is was 78. Now today after two injections=four weeks with Actemra it is 8. Was never so low, almost normal. I consider myself extremely lucky. There are perhaps not many patients around that respond so very well to a medication.

I don't take Prednisone or Methodrexate, only Actemra.

Yes, the syringes have to stay in the fridge and have to be taken out 30 minutes before injection. The contain, as I was told, living matter. We're leaving for Mexico coming Friday and we arranged our holiday around my injection dates. Sorry to have no different answer.

And thank you all for cheering up with me and be happy for me. I think of all of you with my best wishes for your health, Monika

By the way, maybe there is someone in the forum who knows more about what a biogenetic agent really is. THank you.

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That is extraordinary! What great results!

It does however make me sad that we don't have access to this drug in the UK as it is the only drug that seems to treat our conditions rather than just suppressing the symptoms.

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Wonderful news- keep us posted !

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That's great to hear.

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