Actemra Adrenals Fatigue at 7 . 5

[Nap1]

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.

[SheffieldJane]

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.

[Nap1 in reply to SheffieldJane]

SheffieldJane. How are you feeling? Did you have your adrenal test? I went back up to 9 mg of prednisone and I don’t think a Synacthen test is going to mean anything at this dose of prednisone. I will be returning to New Jersey beginning of May and will find an Experienced endocrinologist who has dealt with adrenals. I was too sick at 6.5 to function. It is not healthy to have no cortisol as I do at 6.5. You can go into adrenal failure which is quite serious. It can take a very very long time for adrenals to come back to life and sometimes they just don’t. If you get this let me know what’s happening with you.

[SheffieldJane in reply to Nap1]

That sounds like a plan Nap1. Thanks for asking how I am. Much the same I’m afraid, boring even myself by moaning. Let us know how you get on with Endocrinologist.

[PMRpro Ambassador in reply to Nap1]

A good and experienced endocrinologist who is familar with doing synacthen stimulation tests can interpret the result - they aren't absolute, apart from the baseline cortisl level, they are relative result. A paediatric doctor in Scotland did an adrenal stimulation test on my 16 year old granddaughter a couple of years ago to see how her high dose pred for severe asthma had clobbered her adrenal function. It can be done.

All the stimulation test can show is whether the adrenal glands still can function if kicked hard enough - not that they are doing so. Like your car - filling it up with fuel won't make it start if the battery is flat...

[Hidden in reply to SheffieldJane]

I’ll message you re this when l get home x

[Hindags]

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.

[Nap1 in reply to Hindags]

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.

[Hindags in reply to Nap1]

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.

[Hindags]

Nap1 Here it is. cssassociation.org/patient-...

Found it in my phone history.

[PMRpro Ambassador]

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!

[Insight329]

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.

[Nap1 in reply to Insight329]

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

[PMR2011 in reply to Insight329]

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!

[Insight329 in reply to PMR2011]

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.

[Nap1 in reply to Insight329]

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

[Insight329 in reply to Nap1]

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

[Nap1 in reply to Insight329]

Found it. Thanks.

[Nap1]

Where do you type it in

[Nap1]

SheffieldJane. How are you feeling? Did you have your adrenal test? I went back up to 9 mg of prednisone and I don’t think a Synacthen test is going to mean anything at this dose of prednisone. I will be returning to New Jersey beginning of May and will find an Experienced endocrinologist who has dealt with adrenals. I was too sick at 6.5 to function. It is not healthy to have no cortisol as I do at 6.5. You can go into adrenal failure which is quite serious. It can take a very very long time for adrenals to come back to life and sometimes they just don’t. If you get this let me know what’s happening with you.

[Hindags]

Nap 1 and SheffieldJane. How are both of you doing with your fatigue? Has either of you found out why testing Adrenals isn't a part of the PMR protocol for people who are experiencing significant fatigue below 9mgs or so? it's just another one of those things that one wonders...

I have to say that things got better for me when I started using PMRpro's tapering method. Things slowly evened out. I've just started going from 6 to 5 on a 38 day taper, so still more on 6. I hope the evenness holds. If it doesn't, I'll have to push for an adrenal test. I don't know how they approach it where I am treated. I know it isn't customary.

[Nap1]

They just tested the cortisol level and ACTH.

[Hidden in reply to Nap1]

How did you feel during/just after the test? I’m having mine on Friday!

[Nap1 in reply to Hidden]

Didn’t have the synacthen test yet. You’ll have yours before me so you can tell us.

[Hidden in reply to Nap1]

Will do x

Hope you’re not feeling too bad x

[SheffieldJane]

This thread started a while ago didn’t it. Sad to say, nothing much has changed with me. Except odd little fizzy highs occasionally, hope it’s my Adrenals. I am overdue for a Rheumatologist appointment as she’s ill. So nothing to report. Best wishes though. I’ll tell you if anything helpful happens.

[Nap1 in reply to SheffieldJane]

Yes same story different day. Keep in touch

[Hidden]

Hi Ladies

I was reading your (old) posts with interest, I’ve been off the site for a while, somewhat below par plus a few unrelated issues or were they?

I sometimes think l should write an update on my progress on my page but never seem to find the time.

I’m struggling with fatigue & currently on 7mg as per GP having gone back up from 5mg in the hope it would help me through my holiday but sadly not really!

Long story short, been on Prednisolone since February 2011 had PMR since the previous October aged 55 l’ve been up n down on Prednisolone, been on Methotrexate twice, had Breast Cancer, a Mastectomy & Chemotherapy plus it’s long term effects.

I eventually got down to 5mg with Methotrexate, however following a very busy but exciting week leading to Our Ruby Wedding Party in September l basically felt awful, could hardly drag myself out of bed not PMR but sheer exhaustion & thought my days were numbered! A trip to A&E on Chester Race Day with drunks, fallen jockeys & a minimum 4 hour wait after triage that took 2 hours l decided l would treat myself & see GP next day!

They upped my Pred for a week & then back to 5mg but I never really felt right.

I cleared my diary, went back to ‘one event a day’ rested in the afternoon & generally took it easier. Then we decided to sell our house & move closer to our son, daughter in law & new arrival due in July. I’ve kept a very steady line with the buying/selling & hopefully it’ll go through without too much stress.

We’re currently sitting waiting for our plane to fly home, my Dr put my steroids up from 5mg to 7mg to assist my fatigue before & during the holidays, I’m afraid I’ve not been up too much while we’ve been away but a Cruise does facilitate resting if that’s what you choose but sadly the hot weather & l are no longer friends!

I’m booked in for a Short Synacthen Test on Friday & wether it’ll be conclusive one way or another will be interesting but I’d like a referral to an Endocrinologist to see what they think. Sometimes l don’t think l’ll ever get below 5mg & I’m not really living life as l should be & 5mg is not enough to get me through the day, l have our new grand baby to look forward too & a new house to make our own, we are however having a full Removal Service as l know l can’t cope with it all.

As an aside, my GP treated me for depression last June as she felt the PMR, the Cancer, Surgery & Chemo had taken their toll on me & I’m still taking an antidepressant which l do think helped as my mood is good even though my poor body has taken a beating one way or another l won’t bore you with the Chemo Side Effects & developing of skin cancer to add to my tale of woe.

We keep hanging in there hoping for better days ahead.

Best Wishes

Mrs N xx

[Hindags in reply to Hidden]

You have such fortitude and pluck. Good luck on the move. Keep on keeping on.

[Nap1 in reply to Hidden]

You are quite unbelievable just keep it up. With regard to the adrenals maybe 7 mg of prednisone is not enough. It was not enough for me so presently I am 8.5. Wish you the best. Let us know what is going on and how your synacthen test worked out.

[Hidden]

Thanks, will do x