GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

I will start a Acterma transfusion this week. What were your reactions? What was dosage. Yikes you have had 7. How many will it take? Side effects?

I did not have any side effects from the infusions until just recently. I had 6 infusions and then we tested by A1c and Cholesterol and my cholesteral really went up from what it normally is. All other labs have been great. The infusion itself is not stressful at all, the nurses are really helpful and nice and I really appreciate what they do. Bring a book, or watch tv or bring your cell phone and the time goes quickly. I had a video conference with my Dr. this past Friday to adress my cholesterol. Also, I am having a relapse of symptons for my GCA. So my Inital thought is to quit because of relapse and cholesteral issues. I'm just wondering if ACTEMRA is working for me. My Dr. thinks it is because I was down to 10 mg already. My Dr. raised my prednisone up to 20mg but I am still feeling symptons of my GCA so I'm very disappointed. THe dose of ACETMRA was 6mg/kg (400mg/20mL IV solution ) but we are going to raise it up to 8mg/kg (not sure what that calculates out to be for the IV solution). That has me a little nervous because what will that do to my already high cholesteral. I'm going to try it though and see how it goes.
Everyone reacts differently and I've read a lot of positive reviews from people who are doing very well on it so everyone is different. As for how long you are on it I think it depends on how you respond and your doctor. My doctor said I would be on it for at least a year and once off of prednisone a few more months after that. This is the longest journey for sure!! Good luck to you and let me know how it went for you!!!

Thank you for your prompt response and information. All of this journey is from a blunt trauma to head, temples and face after I passed out from donating blood, face plant onto concrete. Had 1.5" of arteries remove on each side of head. I hope/pray that this will end well. Statistics are not optimistic.

I agree with regarding the statistics not good. It doesnt seem like anyone has a long lasting remission which is very disappointing.

Does anyone have any insight/ opinions on probiotics?

Does anyone have any info or experience with taking probiotics which helps with inflammation for auto immune diseases? I've been reading some info on it but some articles say it's good and some say those with compromised immune systems shouldn't take probiotics

The doctor prescribed me pantoprazole. I never had heartburn.. etc prior to my diagnosis of PMR/GCA I was experiencing terrible chest pains, which I didn’t know what it was. I ended up at the hospital and they told me it was this terrible heartburn / gastritis from the prednisone. This stuff is great ! I will take it for two weeks and it has helped me immensely.

I was diagnosed with LCA last August and was hospitalised for 3 days while having large dose prednisone as an infusion. I had 2 episodes of serious double vision. I had PMR back in 2015/16 and was weaned off the dreaded Prednisone and thought I was over it. I remember being warned about eyesight problems but pushed that aside and felt fine. Then last August and the double vision. I am on a cocktail of drugs which I feel have compromised my health in other ways. I now have Atrial fibrillation , lumbar stenosis, sensory neuropathy of the feet [apparently from the lumbar stenosis]which affects my walking . I am struggling to stay optimistic about my future . My rheumatologist is positive , I think but all these drugs are doing my mind in .

I’m so relieved to see that others have fatigue too! I also feel very shaky and unsteady on my feet. Interestingly, my rheumatologist started me on 20 mg of prednisone 20 months ago, and tapered me down to 5 now. I know that’s good, but I’m concerned about this shakiness.
I used to be a walker and a golfer, but can no longer do either!

Hi i am currently having troubles. I to have pmr and gca. Started actemra infusions in oct. Was on 60 mg and got down to 10mg in april but struggled in the second week of that. Now have tingling in my head and face. Dr put me back up to 20mg, didnt work then up to 30mg didnt work and now I'm back up to 60mg right back to where i started. Still have symptoms even though I've been on this for a couple days. I am beside myself. I've been on Prednisone since last may 2022 when initial diagnosis was pmr, i didnt get gca until sept. So I'm worse off a year later. I'm not sure what happened but it seems like both the Prednisone and actemra stopped working. Now what do i do. I'm trying an anti inflammatory diet, just started drinking kefir (probiotics) as i heard that would help with inflammation and doctor said it was okay. Maybe something else is wrong but not sure. Things were going so well.