Advice on Adalimumab please.

[Jules6663]

Hello all, my daughter just been started on injections of Adalimumab. She has been very poorly for four years been diagnosed with Bechets, and other things for about two years.

The main reason that she has been put on the injections is because basically nothing else has helped long term. However her wonderful specialist has moved miles away and has left no instructions as to how to cut down her other drugs she’s on huge doses of Pred was 40mg for ages currently on 22.5mg. Normally gets to 20 and it causes a massive flare. She’s also on Octazia, Coltrazine and MMF. She’s been on pretty much everything over the years. Has anyone else been put on the injections and if so how fast could you drop other drugs down.

She does not want to drop without being told how to safely, we need to get hold of the COE or her normal hospital or move to Oxford to her normal specialist but not sure how quickly we should be chasing this.

Any experiences we would be grateful for.

If anyone is in the Oxford area the John Radcliffe now has Dr Dobey, he has saved my daughters life can not recommend him enough.

[Snow-Drop]

Hi,

As for reducing the prednisone, I would get your Gp to advise you, as they may want her to transition slowly whilst she goes over to the injections.

Also if they haven’t told you to stop anything else it usually means stay on them but again I would get that confirmed by phone call to either the CoE, or whoever does her local care plan is: rheumatologist etc? I would do that today as soon as possible.

As for the injections, I’ve tried many including infusions & find these injections the best for me but they are a bit painful so I leave them out the fridge for 1 hour prior to injection, For me it stings going in & hurts after on the injection site but by morning it’s all fine. It took about a month to 6 weeks to see an improvement but for me they are the best & I now have a better quality of life.

Good luck xx

[Jules6663 in reply to Snow-Drop]

Thank you, I’m going to try and get hold of the secretary that her specialist had today and see if anyone has taken over from him. If not looks like we are travelling to Oxford, which is fine it’s just a shame the timing has been like this.

The injections have already made a difference, we know the other drugs have to be lowered especially the pred as her body is beginning to show problems, that big a dose for years is not good.

We were told to take the injection out of the fridge 20 mins before by the nurse who trained her, other than the normal injection Bechets mark she’s been ok.

Thank you for replying.

[Snow-Drop in reply to Jules6663]

Hi

Yes your doing the right thing by getting hold of the secretary etc but if you have no joy, the Gp should be able to give a coming off dose in the mean time. Really glad the injections are well eking already, yes your quite right they do say 20mins but I had confirmed 1 hour is also ok, for me personally I find the hour better but you go with what you’ve been advised especially as she is younger etc.

Good luck with everything 💕

[Jules6663 in reply to Snow-Drop]

Thank you so much xx