GCA, Actemra and feeling exhausted

[christine2715]

I have been so much better since taking Tocilizumab but I still get days of aching all over and feeling really exhausted. I am really not my old self and wonder if I ever will be . My husband and I are looking after an 11 month grandchild which means a 2 1/2 hr journey each way in the rush hour - leaving 6.30 and not getting home until 8.30pm - only one day a week but it exhausts me for for several days. I am not sure what the aching is. It is particularly shoulders and knees. Sometimes I seem to sleep fairly well but wake up feeling as if I havnt slept for a week! What does everyone else think? I havnt been on the site for a while but always appreciate your comments.

[PMRpro Ambassador]

I think your day looking after the bairn is simply too much for you - it would be for me! The travelling alone is exhausting and the day baby-sitting an 11 month old is too. And you are doing it all in one day! If I were doing that I would do one of the journeys on a second day - stay the night before or after somehow. One day like that would flatten me for the next 3 or 4 - so it doesn't surprise me how you feel.

They still don't really know how Actemra works - whether it has any effect on the disease process itself. Pred doesn't so the actual disease is still chugging away in the background - and leaves your body fragile and unable to tolerate overdoing things. Maybe the same is the case even with Actemra. And while it is certainly far and away the best steroid-sparer they have, it still doesn't work for everyone. Other new drugs that are being tried and which seem to work have totally different mechanisms - so there is more than one thing going on to be managed.

[christine2715 in reply to PMRpro]

We have thought of staying overnight but they have no spare room and means sleeping on a blow up mattress or in London. Also it then cuts into two days and means my husband cannot get any work done the next morning - he is still working - albeit from home. I am hoping we wont have to do it after September when she can get a nursery place for her.

[PMRpro Ambassador in reply to christine2715]

This possibly sounds harsh but my daughters don't have spare rooms - but we get their bed for the night we are there. It has always been so since I developed PMR and sleeping on the sofa wasn't really an option any more. I take our own bedding on the back seat of the car so there is no work involved for them. And they aren't expecting me to provide cheap childcare so they can earn.

[Tj2017]

Hi Christine,

Hang in there. I was on Actemra for 4 months for GCA and PMR. I was doing the self injections once a week at home. I was totally exhausted for the entire time. I was pretty much bed ridden, and couldn't stay awake if you paid me. I slept through a lot of family events. I was unable to work. I had to pace myself as I too enjoyed watching my grand kids. I had to say no more than I would of like. I also asked a friend to help me watch the kids.

After stopping Actemra and reducing the pred, my energy level slowly returned. It took several months. I am almost back to work full time and feeling much better. Pain control is still something to be managed and I am currently at 11 mg of Pred.

So there is an end in sight.

Best of luck,

TJ

[christine2715 in reply to Tj2017]

Why did you stop taking the Actemra? I have to say that before I took it I just could not reduce at all. It was utter misery reducing every 1 mg.

[Jim-CJ]

Hi Christine2715,

My wife is going through the same thing. Actemra has helped her to reduce to 10mg of Prednisone. Her Doctor recently started her on timed released Iron & B-12. She takes it in the AM and does feel a little more alert in the PM.

Might Help,

Jim & CJ

[Dream21]

I empathize. Sounds just like my journey. I need to rest more throughout the day. If I do too much or have a stressful time, my energy plummets and takes days to recover. I hope you can find a balance that works for you. Be gentle with yourself.