Enbrel ?

[sarah1967]

Hi all,

i hope everyone is as best as they can be at present. I haven't blogged for awhile but i have enjoyed reading other peoples posts. At present i have had 6 Enbrel injections but sadly Thursday gone my consultant asked me to stop using it due to some strange side effects. Which only ever happen at night, a strange prickerly feeling, kind of pins and needles in my hands and feet.also a cold sensation down my arms, my Enbrel nurse suggested nerve damage i was just worried about having a stroke or heart attack as wired as that my sound. I was wandering if all of you who are or have been on it have expearinced any such thing/things or similar ?? i'd like to hear your stories and what happened next for you? these side effects started after the 3rd injection.Also i have noticed different spellings of this drug so does it mean it's a different drug altogether?? I feel totally distroied by this news as during the day am great !! A friend even said to me just on Monday gone "i'd got a spring in my step at last...............

Am dreading the next 3 weeks and wander what will become of me this RA is so crapy !!

Still the good news is if there is ever such a thing its going to be the hottest sunny weather this weekend in history. So folks lets all try and enjoy it as best as we all can.

Sarah xx

[Neverwell]

Hi Sarah I was on embrel for eight weeks but I didn't have pins and needles I had bad reaction sites which was lumps and large rash so they have stopped me I'm going onto humira in a few weeks hope you get sort out soon Karen x

[Hidden]

Hi Sarah. I've never tried Enbrel so can't really offer advice but I did have similar symptoms to those you describe back in September. I had lots of tests to exclude vitamin B12 deficiency and other stuff. They were all clear but because my ESR came back quite high again my rheumy decided that it was uncontrolled RA causing the pins and needles and chills so he switched me to injectable MTX which improved things a lot. Mine wasn't just at night though it was constant for about 3 weeks? Its a big shame if you have to come off Enbrel - I hope they decide that you can go back on it soon but failing ghat hoping another drug will work as well for you again. Tilda x

[peejay74]

I had really bad skin reactions, spreading all over my body, even to my face and to the point of swollen eyes. I'm now on humira. Been injecting since December, tiny skin reactions now but only sometimes. Constant cold pretty much instead but the ra is def in check. I'm hoping I can get over the cold thing with healthy living, extra vit c and avoiding others with illness. Just have to be v careful. I didn't have anything like your symptoms but I'm guessing not many will have had symptoms like I had. We're all different Im becoming to realise. My rheumy nurse says I make her work -think she means I'm unusual but I like to think we're all a bit like that and she says it to everyone!! They will find the right drug for you I'm sure, this must be my 6th or 7th, all having given me diff wierd reactions. Good luck and hang in there.

[jeanabelle in reply to peejay74]

You sound just like me pew jay. I was covered in a rash, it was everywhere. I had already been on humira and had projectile vomiting with it. Before it turned on me the humira was just simply fantastic. I was pain free and back to myself again. I was so upset when I had to come off it. I really do hope it is thee drug for you, it is very good. So now I'm on Tocilizamub. Even with that I had to miss two infusions because my white blood cells were so low. I have an appointment with the doc on Tuesday and I'm hoping I will be prescribed something else as it really isn't working for me. My nurse says to me " jean, what are we going to do with you"? My team are just great and going for my infusion can be a good laugh as we are always laughing about something. They are so good to us, aren't they? All the best. X

[peejay74]

My skin reactions were on enbrel, sorry didn't say that.

[allanah]

I had Enbrel too and came off for exactly the same reasons as the nurse told me its like a false ms type of sensation. Not real just that type of feeling, sort of describes how I felt. But they put me on Humira after that and so far no problems, touch wood xx hope you get sorted soon. Xxxxx

[jeanabelle]

Hello Sarah, sorry to hear about the enbrel turning on you. It can be very upsetting And confusing too, i know from my own experiences.

I was on enbrel too for about two weeks although I had a different reaction. I just turned into one full body rash!! Anyhow I have heard others on here talking about the same symptoms that you discribed.

I was off injecting for 6 weeks and I am now on Tocilizamub. It's not great but it's early days yet.

I know my case is different but I really just wanted you to know that it's not the end of the line and there are many drugs these days. So don't give up Sarah and keep in touch. X

[parkie]

Hi everyone, I've been on Enbrel for nearly 15 months now, I didn't feel the benefit until the beginning of the year and my blood tests have proven it. I've had a rashes, bruising, lumps ,itching (especially of thro' the night), I'm so pleased with myself for keep on with it, with regular blood tests and Rheumy appointments. My option for medications limited, (Addisons Disease and AOSD) so I have to try what's offered. Don't give up, wish you luck Ann.x

[cyborg in reply to parkie]

hello thier how are you .I have ankolosing it destroys all my lagments all

over my body i tryed humira didnt work .I have taken the 7th injection of enbrel but noting yet its still flaring like mad .could you tell me how long it took to work for you?

[Hay44 in reply to parkie]

Hi I was on humira after one injection I had to stop as had a terrible allergic reaction. Have now been on enbrel 50mg once a week but have the start of a rash. Nothing as bad as the humira one but not great. Have your rashes died down?

[Hidden]

hi Sarah, i havent been on for a while, I am on Enbrell have had my 3rd injection on Monday and have had two hves appear and feel bloated. My RA has improved in my hands and wrists massively but my elbows and knee joints are still stiff and sore but not as bad as have been, I still have to use my walking stick to walk. But i feel there has been a massive improvement. I do have sweats during the night tho. So sorry it didnt work for you hun hope they get you something better to start. hugs Lena xx

[sarah1967]

Hi all thanks for all your replies to my blog way back at the beginning of May but i have been quiet ill for a number of weeks with a sickness bug am finally back up on my feet again at last ! However my RA is still invading my body all over without the Enbrel injections having to go to nothing. still am back to see my consultant 31st May so on wards and up wards for now trying to be positive but its not easy. once again for all your replies i love hearing other peoples experiences.

[sarah1967]

Hi Cyborg, when i was taking enbrel i was injecting once a week for me it worked immediately.How often do you inject?