GCA Alterma treatment

[LCHRISTOP10]

PMR Dx May 2016. Down to prednisone 6mg for 6 weeks . Few sniffles sneezes sore throat 1 1/2 week ago. Woke up week ago Sunday occipital to frontal headache, nausea vomited x 2. Although wiped out Monday morning from not eating no headache and other symptoms subsided. No vision changes or jaw claudication. Tuesday noted prominent slightly tender blood vessel running toward temporal artery left Forehead. Appnt with rheumy that day. Sed rate 10, CRP 8. Started prednisone 60 mg. temporal bx next day. Results mild to moderate involvement of artery. Question rheumy wants to discuss additional treatment with Alterma(tocilizumab). My insurance should cover. Any input to help with my decision. Side effects scary--infection, heart attacks, stroke, heart failure, pancreatitis, interstial lung disease. Remission and steroid sparing results good. I am in good health other than GCA-PMR without heart disease , diabetes or high bp.

[PMRpro Ambassador]

You mean ACTEMRA - put it into the search box at the top right of the page and you should get quite a few posts from the past few months where it has been discussed. There are only limited nos of people with experience as it hasn't been approved in GCA for a year yet. You would get more info about what it is like to use from a rheumatoid arthritis forum where it has been used for about 7 years.

[LCHRISTOP10 in reply to PMRpro]

Thank you for the suggestions.

[Nap1 in reply to PMRpro]

So that reply was somewhat strong to LChristop10, but you know my story, 9 Rheumatologists, a trip from Florida to Mayo clinic which is the farthest point from N to S in the US. Moving back to NJ 1/2 year, etc. Now, for the first time I feel there is going to be an end (I'll take remission) to all the pain and suffering. I hate leaving this doctor. He was kind enough to give me his cell and blood tests for 12 weeks along with the prescriptions. Although he wants me to do 1 mg every 2 weeks,I am leery because I have done the .5 for 2 1/2 years, but look what that got me 3 relapses anyway. I think I will do 9.5 after I am in Florida and settled in, for a week and then 9 for 2 weeks. I am just plain scared even though I feel ok and my blood cannot be any better. Enough for now. Hope you are well and still plugging along. I will now pack my outdated computer. (use I pad mostly anyway).

[Nap1]

I’ve been on it for 8 weeks the shots and it’s wonderful. I have had GCA for two and half years with three relapses. Presently on 10 mg which I was never able to get to before. Was very scared also. Need a few surgeries for other reasons which I have to put off because of the possibility of infection. However you can get infections from surgery on steroids or on nothing. Give it a shot. You can always stop.

[LCHRISTOP10 in reply to Nap1]

Thank you for your reply and encouraging words. Are your injections every other week?

[Nap1 in reply to LCHRISTOP10]

Sorry I thought I answered that my shots are every week.

[Nap1]

Listen, just do it. My shots are once a week. From the steroids I developed diabetes, eye problems requiring 2 surgeries (not for cataracts). My skin is like paper and just splits open which means difficult to exercise, I am bruised badly all over my body. I have gerd and steroid myopathy. This is just from the steroids. There is more, but I do not want to bore you. Oh yes, I need a knee replacement because of two tears in my meniscus that will not heal.So I just limp around until I get down to 7 mg. of pred. when I can halt the Actermra for a few weeks. I hope I can get down to 7 without flaring. Been there and done that 3 times. Are we convinced yet.

PS I leave from NJ to Florida tomorrow. Good luck. Stay in touch.

[LCHRISTOP10 in reply to Nap1]

Safe travels to Fl. What area do you reside? I will be in Ft Lauderdale area for 3 months 1/1/18. Not sure if I will need a rheumy will there.

[Nap1 in reply to LCHRISTOP10]

We will be neighbors I am in Boynton Beach. I wish I could recommend a rheumatologist but they know nothing about GCA. If I find one I will let you know. Stay in touch. If you take Actemra, The company ships it to you three months at a clip. It’s really very convenient. I took my own shot today and am getting ready to drive to Alexandria Virginia and then the auto train tomorrow to Florida. Happy to meet for lunch one day there is a cheesecake factory right in the heart of river walk on Las Olas Blvd. Stay in touch. Marilyn

[LCHRISTOP10 in reply to Nap1]

My address is Pompano Beach. Would love to meet for lunch one day. Venue between the two cities would be convenient for both of us without fighting Lauderdale traffic and parking. I am an RN. I'll need to push myself to puncture my own skin. Terrible to say after teaching diabetics for years to administer insulin. Which mail order pharmacy do you use? Is the drug stored at room temperature? Your input is valuable to me. Relax and rest on the train ride.

[Nap1 in reply to LCHRISTOP10]

Truck needs to be refrigerated I just packed it with a ton of ice and gave myself the first shot. Not terrible. We’ll talk from the train. Hillsboro Beach has some nice restaurants

[enan-illuc]

Hi Lcristop10,

I have GCA and PMR and am at present on Actemra (Tocilizumab) and Prednisone. I have had the GCA for about 16 months starting at 60mg of Prednisone and tapering down slowly to 20mg (was at 13mg but had a Flare). I have been on Actemra since July of this year and I think it does help. I have not had any side effects and believe it helps to keep the inflammation in check. I would not rush to drop the Prednisone too fast, this is not a race, but it does help in tapering for me. I hope this helps.

Enan

[LCHRISTOP10]

Reassuring to hear from members with positive response to Actemra with minimal side effects. Horror stories from many R Arthritis patients. ? Due to IV infusion rather than injection, dosage differences or previous trials with other biologicals.

[Nap1]

Sorry I thought I answered that my shots are every week.

[Nap1]

We will be neighbors I am in Boynton Beach. I wish I could recommend a rheumatologist but they know nothing about GCA. If I find one I will let you know. Stay in touch. If you take Actemra, The company ships it to you three months at a clip. It’s really very convenient. I took my own shot today and am getting ready to drive to Alexandria Virginia and then the auto train tomorrow to Florida. Happy to meet for lunch one day there is a cheesecake factory right in the heart of river walk on Las Olas Blvd. Stay in touch. Marilyn

[Hindags]

Just read this thread. I wonder how all of you are doing with actemra. Last posts were 3 months ago. It is now Jan. 26, 2018. I was diagnosed PMR only Dec. 2016. Currently tapering to 7. Random sinus/headache pains that are worrisome re GCA. I wonder how my journey through this would be different if Actemra were part of my treatment.