ROACTEMRA : Hi everyone. I am looking for anyones... - NRAS

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ROACTEMRA

Mouseling profile image
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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 🙂

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gym4life profile image
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 profile image
Mouseling in reply togym4life

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 profile image
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

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