Interferon

[shine78]

Hello I'm just wanting to know if anybody his on Interferon and as it helped them and also how was the side effects of it. They are putting my daughter on it where just waiting for the hospital to approve the funding for it .

[InformaticsJohn]

Hi

I have been on Viraferon Peg injections for about 3 years now after a couple of previous rounds of treatment (both about 18months) had to be stopped because of low blood counts.

Initially side-effects do make you wonder if it is worth it! Interferon is the substance the body produces naturally that gives you the "feeling" of flu. So basically you feel like you have flu for a couple of days each week - not a cold or a bit of a virus FLU. I also get an incredibly itchy patch about 2 inches diameter around injection site after about 4 days which persists for about 3 weeks. My advice is inject in the early evening and go to bed dosed up with paracetamol

HOWEVER, in my case the "flu" symptoms do improve with each injection and after a couple of months are relatively minor. Likewise the itchy tummy is something you get used to. My daughter also has Behcets and I know she would not tolerate the red marks on the abdomen in summer but as we move out of "bikini" weather, at least in the UK, this may not be an issue but for a girl she might want to think about where she injects.

The fact I have put up with the side-effects of Interferon for several years does highlight that, for me, the overall positive effects of the drug are worth suffering the side-effects. Most importantly the Interferon does seem to have kept me free of major problems due to Behcets (including deafness and Heart / Lung problems) which regularly appeared on other treatments (I have taken virtually all the options over the last 20 years)

Your last point highlights one of the benefits of being under the care of a National Centre (I am under Liverpool) as there is no issue with funding. At a National Centre, If the consultant thinks you need it - you get it, Funding is already assured.

Hope that helps.

John

[AmandaMoseley]

Funding should not be a problem - the CoE holds the budget and if it is on the pathway then it will be funded

[InformaticsJohn]

Hi Again

I should have looked at your profile before replying

Just to say as well as having Behcets myself my Daughter was diagnosed with it at 10 years old and spent about 6 months in Alder Hey Childrens Hospital as well as missing most of year 6 and half of Year 7 in her education. She is now 23. She got 10 A and A* at GCSE. 2 A's and a B at A Level, a 2:1 in Biochemistry from a Leading University and has just started work as a Science teacher having completed her Teacher training. So take heart the diagnosis is a hurdle but not an insurmountable one.

Kind regards

John

[sian35]

Hi

I was wondering why they are using interferon? Have they tried infliximab etc?

Sian

[shine78 in reply to sian35]

hello yes she's had infliximab tocilizumab adilidamab too

[magirose]

Hi there. I have been using interferon for some time without major side effects. I have slight flu like symptoms which are easily taken care of with paracetamol or ibuprofen. She should take it when she is injecting. Has had an amazing effect on my life. Am now symptom free. Hope she finds the same releif I did. X