Actemra and aches and pains!

[Stkeyna]

I was put on Actemra about 3 months ago and have dropped as prescribed i.e. 1mg per month. I have had GCA for 14 years and was stuck on 14mgs of prednisolone for some time.

It has been a struggle at times but a few weeks ago I noted I was beginning to ache in my muscles and joints similar to fourteen years ago when I was first diagnosed with polymyalgia. So I now have knee, hip and neck pain also muscle pain in my thighs and shoulders. I also have pain in my hands particularly my thumb joints which is something new and, of course, might be arthritis as I am now 72 year (male). As well as being on Actemra I have had to take a drug called entecavir as it was discovered that I am a hepatitis B carrier - non-active. No idea I had it until I was given a general blood test before going on the Actemra.

I was just wondering if anyone else has had a similar experience of dropping on the steroids and then aches and pains setting in? If so did they ride it out successfully or go back up on prednisolone?

[PMRpro Ambassador]

If you are on Actemra it should deal with PMR symptoms too. I do have wrist and low back pain at lower doses of pred but I suspect they are OA since they do improve a lot with ibuprofen.

[Stkeyna in reply to PMRpro]

Thanks again. Yes hard work getting old. Interested that you take ibuprofen with pred. I take it you don't get stomach issues!

[PMRpro Ambassador in reply to Stkeyna]

Only occasionally - that's the problem, I can't take it permanently which is what I need. Paracetamol does zilch ...

[Stkeyna in reply to PMRpro]

Yes snap I find paracetamol never works for me. In fact I read some study or other which basically said it doesn't work . Try telling that to the medical profession!!!

[PMRpro Ambassador in reply to Stkeyna]

They do seem to have fallen in love with it! To be fair - i,v, paracetamol is brilliant!!!! Just not very convenient ...

[Stkeyna in reply to PMRpro]

Just seen my doctor who says the polymyalgia is back and I should increase my pred. by 5 mgs at least! A bit disheartened! Does this mean the actemra is not working? And yet I did manage to come down from 14 to 11mgs in three months dropping one mg each time.

[PMRpro Ambassador in reply to Stkeyna]

Actemra only gets half of GCA patients entirely off pred and it is likely to be much the same for PMR. This is because there are at least 3 mechanisms that create the inflammation and there may be more - and Actemra only works for one of them, Depending on how much the others are involved, you may need a dose of pred. It isn't "back", it never went away, but obviously there are other things at work besides IL-6 in your PMR. Just because the ESR and CRP have fallen means nothing - that is related to the way Actemra works.

However - when I started, my rheumy, who has used Actemra a lot, told me not to start tapering for at least a couple of months. Contrary to what some doctors seem to think, it doesn't work instantly and I was about 3 months before I felt different enough to reduce the dose. I know of others who needed months to be able to reduce the dose much.

And to be honest - have they really investigated other differential diagnoses? For example, ankylosing spondylitis can present at later ages looking just like PMR and responds well to pred - but it is caused by TNF (tumour necrosis factor) which isn't affected at all by Actemra. I know a few who have responded well to TNF-inhibitors.

[Stkeyna in reply to PMRpro]

None of this had been explained to me so many thanks! Many of those on here using actemra appeared to be expressing an opinion that they were zipping down the pred. staircase not long after they had started. I thought I was going down too slowly at 1mgs a month so what you say puts it all back in perspective. I need to slow the horses and their perceptions. As always time will tell.

[PMRpro Ambassador in reply to Stkeyna]

Possibly because the doctor doesn't know? I think they should have to pass a test before getting to give it to patients!!!

There are people zipping down the pred dose - but mostly are GCA patients and a lot now are newly diagnosed and it does seem to be easier then than after being on pred for months or years.

[Stkeyna in reply to PMRpro]

Maybe we expect too much from GPs but consultants that's a different matter!Oh those halcyon days of flying down ...to Rio...not quite more to 10mgs in a few days. In the past few years when I have tried to drop it feels as if I have The Arc de Triumph strapped to my back with odd elephant or three thrown in as well!!

[PMRpro Ambassador in reply to Stkeyna]

Adrenal function less spritely maybe. But there is possibly a learned effect - the body is programmed to feel pain even if the cause is lessened and the immune system is also conditioned to persist with what it has been doing even if it doesn't need to. If you see what I mean.