ROACTEMRA

[Mouseling]

Hi everyone. I am looking for anyones experience of taking Roactemra and well advice from anyone really! . I started weekly injections 3 weeks ago. First couple of days I felt pretty good then I got symptoms of sore roof of mouth, very dry mouth, thirst, general feeling of dehydration. My eyes began to feel very dry. I was very tired and had a heavy groggy full up feeling in my head and felt slowed down mentally to the point of feeling forgetful/detached feeling, also my hearing was over sensitive to noise especially when different sounds at once. I had changeable digestion, bad taste in my mouth, what I assume is indigestion, acid symptoms, lack of appetite. My gums were bleeding when I brushed them. A feeling of heat a hot flush periodically but also chilly at times. This was bad for two days and then the symptoms were improved but still there to different degrees.

I spoke to the Rheumy nurse who said it sounded like I had picked up a cold. I didn't have any sore throat, sneezing, coughing, catarrh. She said to have the next injection.

Because I have had allergic reactions to other drugs I was taking an antihistamine. I also take an anti depressant. I had been on Cimzia previously which didn't seem to work so I had had 8 weeks off that before I began Roactemra. I had had to have a steroid injection at the beginning of September due to a bad flare when off Cimzia. Because the Cimzia wasn't working well, I had Steroid injections in March and June of this year and November 2017.

I had my second injection of Roactemra and although I was getting the symptoms described they didn't seem as severe. Now I have had my third injection last Sunday 14th. Again the symptoms are rumbling around but yesterday hit me harder. So I have left a message for the rheumy team and now thought I would see if any one had similar experiences.

Before I started Roactemra l have had to take naproxen with an Omeprazole tablet to help when I finished Cimzia, but I haven't taken any naproxen since starting this new drug. I have experienced indigestion, fatigue, brain fog, thirst, at different times before.They have not lasted though. I couldn't tolerate methotrezate it made me very ill and I had bad nausea from other drugs. When I started the biologics the RA responded well but I got allergic reactions so had to discontinue.

So I would welcome any thoughts on coping with these symptoms.....so far my joints have been alot better too. Trying to stay positive. Thanks 🙂

[gym4life]

I have been on cimzia for almost two years and no problems. It has been good for me. Everyone body is not the same. Hopefully you will find something that works.

[Mouseling in reply to gym4life]

Thanks for your reply. I am glad Cimzia works for you. I don't think many people in the UK are on Tocilizumab /Roactemra. I am hoping that if this is side effects I am experiencing they will wear off. The frustration is that this drug seems to be working for the RA. Rather like the earlier biologics I took which I had to stop because of allergic reactions.

[sjhewitt42]

Hi I had my first Toc infusion last Wednesday.. Thursday I felt like someone had hit me round the head with a baseball bat! A week on and I feel a little better. Fingers crossed it works. Cimzia was brilliant for 5 year then I became massively allergic to it and it brought on systematic Lupus. Gutted! Have tried Enbrel and Abatercept with no effect. xx