Actemra problems.

[Wilson1952]

My husband has been on Actemra for about two months and hasn't had any of the side affects that have been mentioned so far. However, he is ta king it because he has GCA and it was suggested it would help him get off some of the prednisone he is taking 25g when we started. He's down to 19g now but he seems to think that since he has been taking it his sight has got less slowly. A year ago he lost both eyes within two to three weeks and has minimul vision in his right eye only. Cannot make out people sometimes just shadows. Does anyone have sight problems with Actemra? I am having trouble now with giving him his shots...which he doesn't want to take. What to do?

[SheffieldJane]

Your husband’s sight loss is much more likely to be a consequence of Giant Cell Arteritis. I am sorry for this huge, life changing, shock to you both. Was your husband on high dose Prednisalone for long before this happened? What have the doctor’s said?

[SnazzyD]

GCA can cause blindness as SJ says but if he’s on the right level of countermeasures, that shouldn’t keep deteriorating from the GCA. Pred can also cause cataracts. Mine came on over 6 months from none to some and they were due to Pred. Has he been checked recently?

[PMRpro Ambassador]

I'm so sorry - despite the charity's best endeavours people do still lose their sight with GCA,

I assume you have reported this to his doctors? After a year I wouldn't expect the change in vision to be due to less pred but also tapering that much so soon is not a good idea. My own rheumy told me to wait at least a month before tapering and only taper in small steps.

However, an eye exam would be a good idea - there is an eye effect that Actemra can cause though it doesn't usually affect vision. Pred can result in speedy growth of cataracts as Snazzy mentions.

[emmamom]

I have been on Actemra for over a year and have had no vision problems that I attribute to it. I have noticed that as I lower my prednisone, my vision changes, but I think it is because my eyes change size and shape with lower levels of prednisone. They "normalize" after a while on the lower dose. I would get in with an opthamologist (MD) ASAP and ask for detailed imaging of circulation in eyes. I am so sorry. I hope that things improve quickly.

[Chiqui1950]

Yes! I am so sorry for the vision loss your husband is experiencing !! Besides the wise comments shared above, I would like to add to check his inflammation levels right away with the ESR and CRP blood tests. The results will give him and his rheumatologist an idea as to whether the current loss of vision is due to high inflammation and poor blood circulation of the eye arteries and whether Wilson is taking the appropriate level of prednisone. The suggestion above about having an ophthalmologist check your husband's eyes for cataracts and circulation would also be very important.

Actembra only works in 50% of patients and it is possible to drop it with the guidance of your rheumatologist, especially if you have only taken it for a month. Do find out about any eye related side effects from Actembra as PMR Pro suggests.

I have had GCA and have tapered down from 60 mg of prednisone to 4 in almost 4 years--- I have made the mistake of rushing the tapering when I should have waited because of symptoms and test results . I only take prednisone and fortunately for me it has not affected my incipient cataracts. Prednisone does have a variety of side effects which are different in each person.

I read a little book Giant-Cell Arteritis by Mason A. Clark. It is filled with humor and facts and hope. It made a huge different in my life as I was handling my active GCA. Also this forum is an amazing resource filled with facts, wisdom and hope and I feel very lucky to be a part of it.

All the best as you proceed to support your husband in his recovery!

[PMRpro Ambassador in reply to Chiqui1950]

"Actembra only works in 50% of patients "

Not quite - it only works 100% in half of patients, Providing IL-6 is involved it will work for everyone to reduce the dose of pred, only half will get off pred entirely, the rest will require a much lower amount of pred, Which isn't quite the same thing.