Actemra Adrenals Fatigue at 7 . 5

Some advice please I am finally down to 7.5,after 13 weeks of Actemra, very tired entire body hurts. Some reactions from Actemra are very high cholesterol and strange blood pressure readings. I have had muscle weakness for a very long time but this fatigue is not just muscles. Which test can I take at 7.5 to test adrenals? Is there anything at this level or do I have to go lower on the prednisone. I wake up exhausted. Thank you.

14 Replies

  • I am on 7 mgs and have been experiencing extreme fatigue and general aching. My Rheumatologist will arrange a Synacthen Test for my Adrenal Function if these symptoms persist. She wants to wait until I am at around 4 mgs of Prednisalone. Being in the U.K. with a PMR diagnosis, Actemra is not an option so far. She is concerned that the amount of Pred I am on now will mask any inability to produce my own Cortisol. My concern is that I feel stuck at 7 mgs and feel quite acutely I’ll if I drop lower. So I can totally empathise with you. However a diagnosis of Adrenal Insufficiency won’t help our current fatigue which can stem from the disease ( PMR or GCA) or the long term use of steroids. So I am not clear where this leaves us. Adrenal deficiency is treated with Pred or similar. So we are between a rock and a hard place. The only solution I have found is to rest a lot and have at least one nap a day, with all the usual pacing of activities. Going for a gentle walk also gives me a better day.

  • I am sad to hear about your fatigue. I have had very little fatigue to date, but when it hit me a few weeks ago I was no delight to be around for sure. I went back up to 9 from 8.5 and it passed. I don't know why, but I am very grateful. I just landed at 8 using PMRpro's 26 day taper....we will see what happens from here. Actemra is not an readily available option for me, even in the US since I have PMR.

    I am very curious about your treatment.

    When were you diagnosed and do you have GCA, PMR or both?

    I'm wondering how much Pred you were on 13 weeks ago when you started Actemra. Why did they start Actemra when they did?

    Did you have fatigue all along or only since you started challenging your adrenal level?

    We are all so very different, but some themes are emerging on these forums. In the last few weeks several members have posted about spectacularly successful tapering on Actemra only to be frustrated by the adrenal issue. At least that is what I have inferred.

  • Hindags. I was on 20 mg when I started reducing with Actemra. I have GCA. Had PMR from 2011 to 2014. Then 6 months later was diagnosed With GCA. It was constantly back-and-forth 40 30 20 back up to 30 and 40. Twice to 12 and then more relapses. I have had muscle fatigue for a long time but this fatigue is different. It is constant. I need to get to the bottom of this.

  • Nap1 when you do, please let us know how you get to the bottom of it and what you are able to do to improve the quality of your life.

    Good luck. I wish I knew something wise to say to you.

    Dorset Lady has posted a link from an article on the CSS forum about adrenal support while tapering off steroids.

    If you can't search for it here, message me and I'll try to find it for you.

  • Nap1 Here it is.

    Found it in my phone history.

  • You are thinking of the synacthen or ACTH stimulation test - but most doctors would want to wait until 5mg to do it. That I suspect is because they tend to forget that some patients only absorb 50% of the pred they take whilst others absorb up to 90% - and that means that at 7.5mg some patients are still getting close to the physiological dose and function well whereas the patients at the 50% end of the spectrum are only getting perhaps 4mg-worth and some don't function so well.

    An experienced endocrinologist looking at the results will be able to see if the adrenals are still capable of producing cortisol even when the patient is still taking pred - others won't. There are even some who insist the patient must be off pred altogether before testing - which does seem a bit cavalier if the patient really does have adrenal insufficiency!

  • My Rheumy suggested I consider Actemra. I joined an Actemta room of a very popular social media site so that I could hear of other’s experiences with it. Unfortunately, extreme fatigue was a common complaint.

  • I would like to join this room. Can you give me the info. Thank you.

  • Hi Insight, wondering too if I could get info on the sight? My story is very similar to nap1’s and my rheumie has me considering if I want to try Actemra. It is a very difficult decision!

  • Actemra Support group on Facebook. It’s a private room so you’ll have to ask to join. I told them I had GCA and was advised to consider Actemra. (Please forgive me if I’m not to reference other social media sites.) I took into account that people rarely post unless having problems.

  • Thank you insight. I looked for the search bar on Facebook and could not find it. Will have to check again

  • Do try again. I just tried typing in Actemra Support and it pops up under Groups.

  • Found it. Thanks.

  • Where do you type it in

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