Things are looking up

[mngirl]

I went to the dr this week. My numbers are in the normal range. Happy me . I didn't even mention Rochester and neither did he. I am now at 20mg. I know it doesn't seem like a change but it is. I was up to 25 then 221/2 then 20 . This week I am going to try 18. With dr ok. Then a 10% reduction. I think if I can stay healthy I will be good. I did make a change in my otc supplements. I added a 16 strain probiotic with cranberry. With all the antibiotics I have taken this last year, I thought it might be a good thing, and I don' t think it can hurt. I still am getting my blood checked every 2 weeks. I have been on Methotrexate since Dec. Maybe that has been a factor too. He even mentioned that there is an injection so you get a better absorption. I don't know if I am ready for that. Actemra was also given as an option. again I don't know. Any thoughts? I so appreciate every post and you good humor.

[SheffieldJane]

You are doing wonderfully well! If it ain’t broke don’t fix it.

[mngirl in reply to SheffieldJane]

thank you . my sentiments exactly.

[christine2715]

Hello all, I have been on Actemra (tocilizumab) for GCA for 1 yr 9 months. I was on the drug trial. For me it has been marvellous and I started at one injection per week, self injecting and am just starting one every 4 weeks. This first four week one meant that right on the last day of the four weeks I had a relapse which the rheumy said meant I am not in remission but the injection are keeping it at bay. These new biologic drugs block the path of the cause of GCA I believe. I have had no side effects at all from the injections and pred. now down to 2 - 2.5 mg. Still get PMR so still very achy at night but so so much better than the vegetable I had become.

[PMRpro Ambassador in reply to christine2715]

Can I suggest you post this as a new thread as this one is very old and many people won't see it. People are very interested in the use of Actemra. Perhaps you could add a bit about your experience, which country you are in and so on?

[christine2715 in reply to PMRpro]

Dont know why the post came up on my email. Not sure how to post as a new thread. Do I have to retype it?

[PMRpro Ambassador in reply to christine2715]

You got a notification of this thread? HU think there may be a glitch with old notifications being triggered but can't be sure, I've been suspicious for a while.

You can copy and paste it into a new thread and to start a new thread click on Home at the top of the page and you will see a box saying What's your question? Click on that and a posting box will appear with the option for Post or Question (stupid if you ask me but no-one did!) I'd do it for you but it won't come up in your name

[Hidden in reply to PMRpro]

I am getting notifications that appear then disappear then it's 3 and they go. Grrrr

[PMRpro Ambassador in reply to Hidden]

Have you reported it to the Help Centre? I'm not impressed with the current status myself - page is shooting about all over the place. Same thing happened on patient.info when they changed to the current iteration. What's with the concept of new and improved??????

[Hidden in reply to PMRpro]

I am being patient and Mrsnails has contacts. 😉

[mngirl in reply to christine2715]

Thank you for the reply to my old post. I was looking at your old posts maybe that was the triger. I just had partial knee replacement and was off actemra for 5 weeks. I am at 6 mg pred and was concerned about relapse. Right now I have the headache, shoulder ache, and couldn`t decide if relapse or withdrawal or just recovery. I too have had good results with actemra. I like what your rheumy said about not a relapse just the actemra keeping the GCA at bay. The post came just when I needed it. I have been on he 6mg for 6 weeks I have been putting off lowering the dose until my knee recovery is a little further along. I had blood work 5/13 and the sed was good but the crp 1.5. Just a little high.