Hi all..Can anyone help whats the info on Cimzia?

[cowpat]

[Beth58]

There's an information page on NRAS website, here's the link.

nras.org.uk/about_rheumatoi...

Beth x

[cowpat in reply to Beth58]

Cheers Beth I appreciate your reply.

[Sailaway]

I'm on Cimzia, what's your question? Here's some info you might find helpful...

Generally, the injections are ok - they don't hurt 95% of the time (one did sting, no lasting effect) & I don't get a reaction at the site of the injection. I wasn't looking forward to sticking a needle in myself (!) but it was nowhere near as bad as I imagined. Tummy is better than thigh.

The syringes are brilliantly designed especially for people with difficulties with their hands (by the Goodgrips people).

Although I'm an NHS patient, around here the pack is brought by a BUPA delivery driver after the hospital issues a prescription to them. They're very good at communications, I get a phone call the day before and a text with a time of delivery.

Also it was a BUPA nurse who came to my house (by appointment) to tell me all about it and help me with the first injections and then rang me after the 2nd ones to make sure it all went well. She was brilliant and I had her number if I needed to ring her.

The first 3 times you do the injections you have 2 at the same time. After that it's one. It's once a fortnight. You cannot inject it earlier than 14 days after the last injection, but you can have it a day late if you want to change the day you inject.

You get a pack of information with the first delivery, an alert card to put in your purse/wallet which you'll need to show your dentist, as well as a sharps bin to dispose of the needles safely.

The studies show it's effective in around 70% of people, so it's worth a try. I'm still waiting for it to be effective, but it can take 3 months so the decision to continue will be taken in October (3.5 months).

Are they considering prescribing Cimzia for you? Have you been on any other biologic?

[joan_w]

Cimzia has been a lifesaver for me. Prior to going on anti-TNF I was having flare-ups every 6-8 weeks, life was miserable and I had no social life at all as I felt so ill.

I have been on Cimzia for about 2 years now and have only had 2 flares - both of those after major operations so they were to be expected.

Healthcare at Home deliver prescriptions to me and they provide the same service as BUPA.

Jo

[cowpat in reply to joan_w]

Hi Jo.Thanks for your reply.They don't prescribe because of the expense I have been told.Is that right/

[joan_w in reply to cowpat]

You have to meet the criteria to be referred for anti-TNF. I then had to have two separate appointments for my DAS score to be checked and that score had to meet certain requirements. I think there is guidance on the NRAS website about this.

If you do `pass' then there should be no problems with being prescribed anti-TNF but these days who knows what each Health Authority will do.

[cowpat in reply to joan_w]

Hallo Joan.Just got back onsite.I will look on the NRAS website.Thank you for the info.Yes, it's scary how goal posts can be moved.Although I'm so new to RA that I am just playing "catch-up"in order to understand what my daughter has been having to deal with for the past two years;and what help she is getting.

[cowpat]

Lo Sailaway. I'm so pleased that you got back to me.Thanks.I don't have RA .I found out recently that my lovely youngest daughter has had RA for over 2 years.But kept it from me because of worrying me!She has it in her feet;ankles;hands;arms.With all the attendant problems that everybody seem to suffer with, on and off.I have read about this drug and she tells me she could still have children if on it.It is very expensive,but appears to work when other drugs she has/is on don't appear to be effective.