Has anyone had to stop actemra?

[pmac22]

I am two years into GCA, was down to 5mg of prednisone, had adrenal tests to if glands were working or trying to and had positive results. Last week I was hospitalized with acute diverticulitis (not my first time) and adrenal insufficiency.

I learned the hard way that just because they say your adrenal glands are working through a “normal” day they can’t handle an emergency. I know PMR Pro had said this in so many words in a past post and because I remembered her words was able to convey that to the emergency room Dr as my blood pressure kept dropping, down to 68/37. They thought I had sepsis but when ER dr gave me 100mg of hydrocortisone through IV it stopped bottoming out and after two days went back into normal range. Thank you PMR Pro.

Anyways I’m back up to 10mg of prednisone and not going back on Actemra because of diverticulitis. I was wondering if anyone else had a similar situation of having to abruptly stop Actemra and how did it go? I worry because a year ago I stopped Actemra for 6 weeks when it was unavailable to get because of a shortage due to it being used on hospitalized covid patients. My inflammation markers shot back up and I had to increase prednisone again. Thank you in advance, also thank you for the knowledge you pass on to others. I knew what to say and how to advocate for myself because of what I have learned on this site. I am feeling better physically this week and it feels good to be home. My heart is broken as I was to be flying out this week end to Colorado to watch my oldest Grandson graduate from High School and will miss it.

Peggy

[PMRpro Ambassador]

SheffieldJane had the same problem I think.

Sorry about you missing graduation - you will have been looking forward to it.

[Hidden]

💐 perhaps there can be a video link organised so that you can be part of your grandson's graduation. X

[pmac22 in reply to Hidden]

Thank you that’s a great idea. I will see if my 12 year old grandson would FaceTime the graduation.

Peggy

[SheffieldJane]

Yes I did give up Actemra after a year.Following permanent severe pain in my lower right quadrant, diarrhoea occasional vomiting and nausea. I chose to give up Actemra myself. I had managed to reduce Prednisalone from 40 mgs to 10 mgs quite swiftly. The pain did not improve, finally I had a capsule camera investigation and diverticula disease was diagnosed. I struggled with significant symptoms until I adopted a strict diet and small portions. At one point my diet consisted of white rice, fish and mashed potatoes. It eventually calmed down and prescribed Buscopan seemed to help. The GP diagnosed that old standby IBS. I had a recent bout of Novovirus ( I think) lots of vomiting, diahorrea and awful flu feelings with severe catarrh. Now the abdominal pain is back and I am having to resume the strict diet.

My theory is that Actemra worsened an existing diverticula disease which I am currently trying to manage. I didn’t experience any withdrawal from Actemra but I now have increasing PMR pain and stiffness, from the illness maybe. I am on 5 mgs of Pred but probably need more. I am a bit stuck really but Diverticula disease is a contra- indication for Actemra. This is a shame because it works, but the pain was and is really life limiting. Oddly my blood pressure dropped alarmingly in hospital for the capsule colonoscopy and nobody seemed particularly interested. I have just had a Synacthen Test and will be interested to hear the results.

Are you sure that you are too ill to go to the graduation ceremony. I go to uplifting things like this and seem to manage when my grandchildren are involved. Taking extra Pred and maybe an emergency hydrocortisone injection kit. The beloved child does the rest.

[pmac22 in reply to SheffieldJane]

thank you for your information and time. My doctor recommended against the travel as I would be by myself, have to fly 3 1/2 hours to Denver rent a car and drive 4 hours to their house. This didn’t seem to difficult before and it is a beautiful but crazy drive across the mountains. Honestly I have no energy right now since I have been out of the hospital. My rheumatologist actually called me tonight to talk about Actemra and said he was on the fence as to whether I should continue it or not. I got the feeling he wanted me to continue but I’m not sure that is a good idea. He takes about a new biologic, kevzara which was recently approved for PMR. He said it had a smaller percentage of diverticulitis issues. I know my insurance won’t cover it for off label use.

Peggy

[SheffieldJane]

I am sorry Peggy, that is too much, it’s the drive isn’t it? Too risky. I have hired vehicle and driver from a trusted firm for distant airports and airport assistance, but feeling so shattered, it will be too much won’t it? Family will have to film and photograph for you to watch at your leisure. I miss a lot as my 4 are in Australia but my daughters are faithful in sending little videos and photos.

Once you have diverticula disease I think you are stuck with it. I took one uncoated Pred tablet the other day and could feel the boil type pain 20 minutes later.

Don’t be heartbroken though - deep breath. 💕

Good luck with medical solutions. Health first.

[Wallysma]

Hi...I am sorry that things have gotten complicated and you are having to change things up. I do hope someone can FaceTime the graduation for you I can imagine your disappointment. But having FaceTime to look forward to will help...and right now being as positive as you can be is key. Face to face hugs WILL come. So enjoy seeing this important moment in your family's life. I have one question...may be dumb but...why didn't they just give you prednisone in the ER ...why cortisone? I just started Actemra sobwe'll see.how it goes. But any reason for a trip to the ER could cause those types of issues.

Please take carebol yourself...congrats on the grad!

Mickie

[Hidden]

Sorry to hear about your adrenal crisis and great that you were able to convey this to the medical team! I hope you don’t mine me asking to what extent your shnacthen result was normal when they tested it? I put a query on here a while back about a synacthen test result where the endo basically said it’s fine but with a very low baseline cortisol and a result to stimulation that was below the normal range. The endo also gave no advice about the need for steroids during illness etc and that worries me.