Skip to Accessibility Tools Skip to Content Skip to Footer

Forums


Treatment

Side effects while on Actemra

  • By kiki

    I’m currently taking Actemra shots once a week. I’ve already been on Methotrexate, Humira, Enbrel, and Xeljanz. I’ve been on the Actemra since June. In the past few weeks I have developed red bumps on both legs, arms, and red blotches on my forehead. My left earlobe is swollen and red. Some of the red bumps look almost like pimples, with a whitehead. Has anyone else had these side effects. Also, I’ve been told my other two choices are Orencia or Remicade. Have those drugs helped? I know I need to call my Rheumatologist, but want to be informed before I do so. Thank you.

    reply
  • By Erin Rush Moderator

    Hi kiki! I am sorry you are experiencing these side effects with Actemra. In addition to any community feedback you may receive, I wanted to share some information on possible side effects associated with Actemra — https://rheumatoidarthritis.net/treatment/actemra-side-effects-and-safety-review/. While rashes are a potential side effect, I think it would be a good idea to contact your rheumatologist, as you mentioned. Thanks for reaching out and I hope you get some relief from the bumps very soon! Best, Erin, RheumatoidArthritis.net Team Member.

    reply
  • By arizonaspoonie

    Hello my name is Lori and I’ve been on methotrexate humira and xeljanz which stopped working. Waiting for pre auth on actemra. I’ll be giving self injections every other week instead of 4 hour office infusion. Can anyone share with me if this has helped I’m diagnosed over 5 years ago and I will be 55 soon. Thank you

    reply
  • By Patricia Darstein

    I’ve been taking Actemra for about 2 years now. I’ve taken every pill and injectable available by prescription and so far, Actemra has given me the best RA “management” with the least side effects anyway. I’ve lost 15 lbs since starting it and I was never really overweight to begin with. Also, I have diarrhea the 1st week of taking my (every 2 week injection). I was increased to every week of injections BUT the diarrhea was not manageable and I was experiencing a constant mild headache so we (my Rheumatologist and I), decided the 2 week injection was best. I also experience “occasional” flareups whereas a quick but aggressive increase of steroids get rid of it. My doctor told me something that always stuck with me…he said you really need to “pick your poison”. And he is right about that. The one with the least side effects but most relief seems to be the only option. Every drug is going to give you some sort of side effect and every single person is different.

    reply
    • By Richard Faust Moderator

      Hi Patricia. I know many in the community understand exactly what you are saying about picking your poison. I couldn’t help but think of this article from our contributor Michael on what he calls “the risk to risk ratio:” https://rheumatoidarthritis.net/living/the-risk-to-risk-ratio/. Every aspect of the decision to treat RA and what treatment carries risks. Hoping your side effects subside some and the treatment continues to help. Best, Richard (RheumatoidArtrhitis.net Team)

      reply
  • By Sierra

    I am looking for some advice/guidance. I was diagnosed at 59 and have been on a variety of medications. I am allergic to Humira ( and all TNF blockers), can’t tolerate methotrexate and have had Plaquenil and Arava both quit working. Now I am down to Sulfasalazine and Naproxen. My rheumatologist and I agreed to doing a full cleanse to rid me of the Arava and the hopefully stop the migraines that I was suffering. Now the only drugs available to be will be orencia or Actemra. (by infusion) I am looking for some advice on which of the two would be best for me since I do have headaches and am susceptible to bronchitis. So if anyone can help guide me on which one to try first based on other peoples experience and knowledge I would appreciate it.

    reply
    • By Richard Faust Moderator

      Hi Sierra. I just wanted to follow up a little on what Rick said. He mentioned Actemra as a non-TNF inhibitor. It is an IL-6 inhibitor. In addition, Kevzara is an IL-6 inhibitor and you can learn more about it here: https://rheumatoidarthritis.net/treatment/kevzara-reviews-how-does-it-work/. Also, there are what are called target-specific DMARDs, such as JAK inhibitors (for example: Xeljanz). This page has more information: https://rheumatoidarthritis.net/treatment/target-specific-dmards/. Your doctor should be able to provide additional information and guidance. Wishing you the best. Richard (RheumatoidArthritis.net Team)

      reply
    • By Lawrence 'rick' Phillips Moderator

      Oh. Thank you Richard, I did not know that Kevzara was a JAK inhibitor. Live and learn.

      reply
    • By Richard Faust Moderator

      Hi Rick. Just to clarify, Kevzara is an IL-6 inhibitor. There is a new JAK inhibitor out – Rinvoq, joining Xeljanz and Olumiant. Best, Richard (RheumatoidArthritis.net Team)

      reply
    • By Lawrence 'rick' Phillips Moderator

      Look at me learning new stuff about the new stuff I learned this month. How says you cannot teach an old fart new things? Never mind what my wife says about my learning capacity. :).

      reply
    • By Sierra

      Thanks Richard,
      Since I am now over the magic age of 65, due to how Medicare is set up, I am limited to only the older drugs used and the only biologics available to me are Actemra and Orencia. I know that Remicade is also available, but it requires Methotrexate be used with it and I am not able to tolerate Methotrexate at all.

      reply
    • By Richard Faust Moderator

      Hi Sierra. Completely understand what you are saying about the hierarchy of drugs. It is interesting concerning Kevzara because when it came on the market just a few years ago it is known that the manufacturer offered it a discount to pharmacy benefit management companies to try to get a foothold in the market. Kevzara was bumped ahead of its fellow IL-6 inhibitor Actemra by the pharmacy benefits management companies (my wife had to use Kevzara ahead of Actemra. Luckily it has worked great for her). As noted in this article it was also offered at a discount to the older anti-TNF drugs: https://www.pharmaceutical-technology.com/comment/sanofi-regenerons-kevzara-faces-competition-rheumatoid-arthritis-market/. Don’t know if these discounts went away or if Medicare simply follows a different formula. Best, Richard (RheumatoidArthritis.net Team)

      reply
  • By Lawrence 'rick' Phillips Moderator

    In addition to the two non-TNF inhibitors you reference Rituxan is also avilable. Admitedly Rituxan is not usually a medicaiotn that is given before Actemera or Orcena. However that is not always the case.

    I have used all of these and feel that each can work for some poeple. The important thing is to discuss the matter with yoru doctor and determine the next step. In some ways these medicaitons are similar, becuase they each require infusions.

    I wish you the very best and hope you will find the perfect next step.

    reply