Rituximab/Enbrel Questions

tillytop

Hello

I have a rheumatology appt coming up soon and think it is likely that I will be starting a third anti-tnf/biologic drug shortly afterwards.

Rituximab/Enbrel are the likely candidates so if anyone has any feedback on these two drugs, as to how well, or not, they are working and their experiences of the infusion/injections, I would really be interested to hear them.

Thanks!

Tillyxxx

dorcas

Hi Tilly

I've not been on Ritux. but did have Enbrel several years ago. I found it to be very effective very quickly, however I developed an allergic reaction to it (rash, redness & itch) and was very quickly taken off it ... more's the pity!

Has your rheummy said which of the two he thinks would suit you best? They work in different ways....

Wishing you the very best of luck with this your third anti tnf... I know how important it is!

Iris xxx

tillytop

Hello Iris - lovely that you are able to be posting again! We've missed you!!!

Thanks for your reply. At my last appt 6 mths ago, rheumy discussed both with me and really left the decision up to me. Given my reactions to Inflix and Humira, my gut feel is that I might do better with Rituximab, given that it is "anti b" not "anti tnf" but I know from the really useful web link you sent me before and from what the consultant said, that Enbrel works in a different way from Humira and Inflix so may be ok. It's a number of years now since I had Infliximab so I want to ask if he will let me try it again since it worked so brilliantly for me until I had a (relatively mild) infusion reaction after about 5 years, but not sure what he'll say about that.

Hope you are managing, I know you have been having a really rough time but I have been thinking of you.

Thanks again for your reply.

Love Tilly xxx

debsmartin

Hi Tilly

I have been on Enbrel for about 7 months and it has been a godsend for me, I feel like I have got my life back. I did have a problem early on when I first started - I had a really bad allergic reaction, I had a really painful rash all over my stomach. I thought that was the end of the treatment for me but my Dc said that I should carry on with the treatment and I'm glad I did. I am really pleased with Enbrel.

Good luck to you.

debs

tillytop

Thanks for your post Debs.

I am so pleased that the Enbrel is working so well for you and I hope it continues to do so!

Love Tilly xxx

sullivt56

Hi Tilley,
Just started Enbrel, well done my 4th Injection today. Works well for me already. Not had any other biological treatment so cant compare.

Not had any problems as yet....

tillytop

Thanks for your reply. So glad Enbrel is working so well for you!

Love Tillyxxx

bevman

Hi Tillytop,
my husband has severe RA that they were finding extreamly difficult to controle he has been on embrel and had rituxamab in november out of the two the retuxamab has been the most effective for him he was on embrel for at least two years and although it did help him his RA was still very active.
Since having his infusion of rituxamab he has been a lot better we have noticed the diffrence he still has bad days but it has helped with the pain.
embrel may work for you as it has with a lot of people.
He had no side effects with the embrel when he had his infusion of retuxamab he came out in a rash and his blood pressure went up a bit but they just slowed the infusion down a bit and the second one he was fine.
hope this helps any other questions just let me no.

Alison

tillytop

Thanks so much for your reply Alison. I was really interested to read what you have said. I am so pleased to know that the Rituximab seems to be helping your husband and I so hope that improvement continues.

Thanks again.

Tilly xxx

PhillyCee

Hi Tilly,

I have been on Enbrel for about 5 1/2 years now. It worked for me within 3 weeks, the downside was being asleep by 6pm most nights for the first 12 weeks or so... Enbrel was a life saver for me but RA is still very active and it may be I am changed onto somethig else next week when I see my specialist.

Hope you find the right one for you.

Good luck.x

tillytop

Thanks so much for your post. Really glad that Enbrel has helped and good luck with your appt next week.

I saw the consultant last week and we agreed that I will start Rituximab shortly. I have to say I am very nervous but, if it works, will be worth it.

Thanks again.

Tilly xxx

frogmorton

Good Luck Tilly

Toni xxxx

dreamdaisy

Seconded by me. I found enbrel pointless and dangerous - a total of five dry months is an outrage against humanity (well, this blob of it) - and who wants two injections a week when an infusion once in a blue moon might work? You go for it, tillytop, and I really, really hope it is the one for you. Let's keep those hopes pegged down at ground level, tho: been there, done that, got numerous Tshirts. DD