What now?

[Heathersmum69]

I have now had to stop the Humeria because of the nasty rash on my arms. What do you think I will be put on next?

Has anybody ever had to come off Humeria because of side effects? and if so what did you get put on afterwards?

Thanks

Jane xx

[benjijen]

Hi Jane, I was on Humira for about 3 years and it was brilliant, I had to come off it due to causing psoriasis. I wasn't put on any other biologic, just sulfasalazine. Not been satisfactory since. Hope you find a good alternative.

[Heathersmum69 in reply to benjijen]

Thank you for replying. I have been onSulpha. it made me sick badly. I'm worried where I go from here.

Jane

[burtonbradstock]

Hello I had bad reactions under the skin and swelling, also high blood pressure and felt unwell however my joints moved better but no use if you feel terrible. I then went onto Embrel but still had problems so tried Rituximab infusion but again felt terrible and high bp. I remain on methotrexate which I have been on since 2002. I hope something works for you as I have had some good years but sadly now me and my body have had enough so change of lifestyle for me now. It is great to be a hero and carry on but be careful rest when you need to and pace yourself.

[Heathersmum69 in reply to burtonbradstock]

Thank you for replying. I was put on Methotrexate tablets at the beginning of my treatment. Unfortunately they made me very sick, so was taken off them. I tried all the other DMARDS they also didn't agree, now this.

My blood pressure is ok, it is this rash.

I am going to look at diet and cut out sugars to see if that helps.

Thanks

Jane

[virginied]

Hello

I am also on humira (3 years) but will change to tocilizumab instead (injection ) as humira doesn't seem to be working for me.

I am also on sulfasalazine ( max dose) and leflunomide.

I don't have bad side effects with humira but it doesn't seem to help my joints much .

I haven't started yet with tocilizumab yet though.

All the best

[Heathersmum69 in reply to virginied]

Thanks for replying.

I was offered Tocilzumabab but went for Humeria. I will try that one next. Hopefully something will work??

Fingers crossed.

Kindest regards

Jane

[Hidden in reply to Heathersmum69]

Hi Jane- I have been on CIMZIA / Certolizumab pergola for 6 months as the different DMARDS didn't help and they caused all sorts of nasty side effects. I take Methotrexate sc weekly. CIMZIA is a TNFa inhibitor. My rheumatologist said if it doesn't give me the results then he would consider switching me to Xeljanj / Tofacitinib citrate 5 mg tablets, this targets different cells: Janus Kinase or JAK.

It is worth reading up on the options before your appointment. Part of the self management model of 'care'.

Good to look at the dietary for sure and see if you can make some adjustments to help reduce the inflammation.

All the best, Doreen

[Victoria-NRAS Partner Moderator NRAS]

Hi Jane

If this was your first biologic, they are likely to try another, and there are a number of options, but only your rheumatology team can tell you which drug or choice of drugs they are going to offer next, as there may be reasons why some wouldn't be appropriate for you.

I hope you find something that works well without having nasty side effects!

Kind regards

Victoria

(NRAS)

[Heathersmum69]

Thank you for replying Victoria.

Kind regards

Jane .

[lornaisobel]

I was on Humeria for 6 - 9 months and for some reason it just stopped working ( it was so amazing to begin with) Nurse said this sometimes happens - the body just gets use to a drug and then it doesn't work. At the moment Im on orencia -abatacept its other name. Its sort of ok -I don't take pain killers often mainly at night in bed and just a couple of paracetamol . 2 days ago I did a 8 - 9 mile walk across the moors and yesterday I went to work in the morning and made paint all afternoon so bit tired at the moment. I work 25 - 30 hours a week andcoming up 70. The worst bit is being tired and a bit vague and have no patience with people who drain me. Keep trying different drugs I believe there are a lot of biologics to try and all seem to work in different ways good luck xx

[sallyc]

This has happened to me as well, I was on humira I started in Nov 2015 then I got an itchy rash just after Christmas. So i have now stopped and consultant has changed to enbrel and i am waiting for my first delivery. I to was on sulphasalazine but had to stop as affected lungs and lefluromude affected liver. I still take mtx but hoping this new biological works for me and hope you get sorted to.

[Heathersmum69]

Hi your case sounds the same as mine. I have been told that they will change me to another bio. In three weeks when I see my nurse next. I will have a read into Enbrel. Good luck with Enbrel. I hope it suits you.

Jane x