3rd injection of ACTEMRA

[mpl615]

So far I don’t see any difference in pain level. Noticed small sores in my mouth a lip feels a little swollen has anyone else Experienced this?

[jinasc]

actemra.com/content/dam/gen...

This was posted on another thread, headed: I'll Have what she's having' put that in the search box top right hand corner.

[Celtic PMRGCAuk volunteer]

mp1615, the leaflet that comes with many medications mentions any swelling around/inside the mouth can be due to an allergic reaction in which case the advice of a Dr should be sought. The other thing I’m wondering is if a folic acid supplement may help as in the case of those taking the steroid-sparing drug, Methotrrxate, which can cause sores in the mouth? Something you need to discuss with your rheumy. Hope you find a solution soon and that your pain levels soon respond as well.

[PMRpro Ambassador in reply to Celtic]

Had a look - but can't find anything. But there seem to be a lot of things missing about Actemra.

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Perhaps worth checking with rheumatoid arthritis patients on rheumatoid arthritis forum for similar experience?

[PMRpro Ambassador in reply to Celtic]

Possibly - but it would be intersting to know how many RA patients get put on Actemra. I get the impression is it is now rather closer to the bottom of the pile. It isn't a good idea to omit information that makes your product look better than others - be sure your sins will find you out.

[Pat9442 in reply to PMRpro]

I am on Actemra (after failing 1st biologic) for RA. I agree with you PMR Pro there are several things not mentioned in the literature. So far I have experienced none of the common side effects but do have a dry mouth and slight hair loss - neither of which are mentioned. Is it working? 6 weeks in and I am still reserving judgement

[PMRpro Ambassador in reply to Pat9442]

Hair loss is mentioned here

statnews.com/2017/06/05/act...

plus the comment it ISN'T mentioned elsewhere! It is Roche's 5th highest grossing drug - really not a lot of incentive to be totally transparent is there?

I am intrigued that hair loss and lung problems are mentioned - a primary objection to mtx is hair loss. And lung problems worry me. Especially when I think about some doctors' knowledge of side effects and interactions with the drugs they use.

[mpl615 in reply to Pat9442]

Just curious how has the ACTEMERA been treating you? My wife seem to been having good days and bad days. I think she does to much when she feels good.

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Bit of a delayed reply - we arrived at our son’s home before I read your last reply. It’s worrying to think that any drug company might cover up anything untoward following their research before the drug going on the market and let’s hope the fears are unfounded, but, having read the link posted on another thread and above, there do seem to be gaps, and I felt really glad I responded to Pred! But then I thought of those few who don’t respond to Pred or who are unable to tolerate it - they desperately need a lifeline, and this new drug has certainly helped to lower the Pred dose in a few people we hear from. Fingers crossed, eh!

[PMRpro Ambassador in reply to Celtic]

The point is not that it is significantly worse - it is much the same as all the other RA biologics. But the company misled by their omission. Let's be up-front - it is done all the time with new drugs these days. But my primary fear is that many patients see "biologic" and for that read "natural". This is heavy duty stuff. It is one thing to use it for GCA in patients who are having problems with pred - another altogether to use it for PMR without giving pred a chance. My line remains - using pred properly and with appropriate advice for management of said side effects needs looking at closely.

[Celtic PMRGCAuk volunteer in reply to PMRpro]

I couldn’t agree more - the right management works. I hear you have a cloned RH - a few more of those wouldn’t go amiss!

[Ruadh]

There was much discussion on the ankylosing spondylitis forums about Methotrexate side effects - especially hair loss... Here is RxList - a list as long as yr arm, includes mouth sores and lung problems (one would be leery of lung probs) :-

rxlist.com/trexall-side-eff...

and drugs.com :-

drugs.com/sfx/methotrexate-...

[Jim-CJ]

Hi mpl615,

My wife has had mouth sores before she started on Actemra. She is now on her 4th week of Actemra. And no side affects thus far. The mouth sores she has had in the past was and still is due to the pain killers she is on for her back. At least we think that was the cause - not Actemra. She is tapering 2.5 mg every three weeks from Prednisone and going OK at 17.5. The prednisone destroyed her bones after three years - 13 fractures in total. She has had Vertalplasties on t-9 through l-5. So we are very happy to have Actemra to get her out of the prednisone nightmare. And, forgot to say, she has GCA.

Hang in there with Actemra - You will make it!!

Jim & CJ

[PMRpro Ambassador in reply to Jim-CJ]

Good to hear Jim - all the best to the Mrs!

[Celtic PMRGCAuk volunteer in reply to Jim-CJ]

Reassuring to have a good news story, Jim, and long may that continue for your wife - it sounds as though she’s had more than enough to cope with as it is. Perhaps worth asking your GP if a dose of folic acid might help the mouth sores. Also, avoid toothpastes containing sodium lauryl sulphate and/or triclosan - both are known to cause mouth ulcers. I haven’t had a mouth ulcer since I started using Sensodyne Pronamel........and eating ‘live’ probiotic yoghurt daily.

[Fiesty]

I was on Actemra for 3 months and did not see any difference in how I felt. The Actemra did give me bad heart palpitations which you won't find in the literature either. I also had mouth sores.

[PMRpro Ambassador in reply to Fiesty]

Did they then decide that maybe the diagnosis was incorrect?

Not only do they not mention palpitations as due to Actemra, I did find a paper the other days saying it IMPROVED arrythmias. And did you file an FDA report on adverse effects - very important that.

[Kittykat298]

I'm on actemra for my rheumatoid and yes have had sores, unfortunately a lot of these drugs can cause that and so can rheumatoid...the swelling can be a sign of allergy though...I actually had a stroke last year and I'm reading through the stat report that actemra could be the reason but I can't prove anything...have had intense dizziness, nausea and have been passing out recently....I deliberately missed my last injection and it has only been a couple of days but I feel much better..

.hope others have better luck on this drug than me