Adalimumab for Behcets

[TigerLily42]

Hi all,I went to my Liverpool CoE appointment yesterday and they are starting me Adalimumab. Just waiting for it to be delivered, then I can get started on it. Just wondering how people have got on with this? If it has helped, how long before you noticed it was helping etc. The main issue for me now is getting the joint pain under control, so really hope this works, as it is painful to walk about/drive now. I was on Azathioprine before this and it was working, but was affecting my liver, so had to be taken off it unfortunately.

Thanks!

[USPolarBear]

Hey.

I've been on it for about two years. It gave me pretty good relief for joints, but not complete coverage. I did have to add Otezla later, but I couldn't walk when I started it and within 2 months the arthritis in my feet was down to where I could get around again.

So, noticeable difference at six weeks. Could walk again at 8 weeks, stopped seeing improvement for arthritis at 4 months.

I have the eye flares too and it took about 6 months for those to really slow down. I was told that is normal.

I have the auto-injector pens. I found it best to inject in my leg with my legs completely supported (stretched out on the couch) where my muscles are relaxed so none of the shot oozes back out (couple of times it came back out and I nearly cried).

I was getting a swollen patch and itching after the injection and at first used ice packs after, but now I let the shot sit out of the fridge for 30 mins to an hour so it's not so cold when I inject it and it has cut down the swelling and itching almost completely. That being said, you do need to make sure to keep the shot under 70 degrees F (20 degrees C?).

I hope it helps you. It made a big difference for me!

[TigerLily42 in reply to USPolarBear]

Hi USPolarBear, thanks so much for your reply. It's really useful hearing from other people. Good to know that it did help you as well. Thanks for the tips on injecting it when it comes to it doing it too. Hoping I don't have to wait too long to get started on it as it's no fun being in this much pain! Thanks again!

[USPolarBear in reply to TigerLily42]

It really is no fun at all!

Have you ever tried/do you have contrast therapy in the UK? Before they finally diagnosed me I discovered it and it made things survivable. It's where you go from full immersion heat to cold and back again? So spa tub, to ice tub, to spa tub (or sauna instead of spa tub). 5 minutes in each until you can move better and the pain takes a break.

It's become very "trendy" in the US and more accessible because of it which is nice, but I put together my own hacked together system years ago using a chest freezer.

There is a National Geographic series called Limitless with Chris Hemsworth that goes over some of the science of how it works in case you find yourself in a position of needing a binge watch.

Hoping you find relief soon!

[TigerLily42 in reply to USPolarBear]

I've have tried both heat and ice therapy separately, and for me, found heat to be better. But this is only using heat or ice packs on the affected areas! Not hot tubs/ice baths etc. oh, I will have a binge of that at some point if I can find it to watch on anything! Thanks again for your tips and advice. It's much appreciated 🙂

[Oathy]

Hello, Like Polar It was good on the joints and the eyes, but other areas like skin/bowel

the lack of being able to reduce the steroids they pulled me off it. But I found out owing to funding issues stop starting over 5 times twice being a very long delay did not help matters.

Its one of those drugs you are either on or not. The brilliant thing is using it at home,

Rituximab is around 9 hr infusion and 2024 was just miserable contracting covid so many times. I found it better injecting into the leg area, really hope it works for you.👍

[TigerLily42 in reply to Oathy]

Hi Oathy, sorry to hear what you went through and hope you are doing ok now. Thanks for all the info regarding your experience. Hoping mine arrives soon and I can get started and see how I get on!

[Oathy in reply to TigerLily42]

Really hope it works for you, It does make a difference not having to attend hospital for infusions etc. I had a good long chat with my former consultant on Tuesday we were talking about Humira it did seem the 6 month break I had owing to funding issues was not ideal. If you do have any questions on the leaflet there's a telephone number they are really lovely and very helpful.

[Lettie999]

I struggled with how painful the injection was, turned out it contains citric acid so the Birmingham BOE changed me to amgevita, same drug but no citric acid and no pain. Good luck x

[TigerLily42 in reply to Lettie999]

Hi Lettie999, that's for the info on this! Still waiting to receive the meds, so will see how I get on when I start the injections 🙂