Having reactions to all biologics

[Eileen1980]

Hi I’m 44 and I have psoriatic arthritis since I was 23 and psoriasis since I was about 16

I started Enbrel when I was 30 and helped tremendously for 11 years then stopped working so was changed to IMRALDI about 1.5 years on that and i started to have injections site reaction was changed to Benapali and same thing happened which then caused really bad urticaria for a few months I am currently on long term antihistamines

My dr told me to stop with the biologics and give my body a break which I did 6 months

So lat week i started my new injections Taltz and within 2 minutes had the worst reaction on injections site the reaction spread a lot for the next 2/3 days

Back on steroids and hydrocortisone cream more antihistamines etc and urticaria is back

I’m at a loss as what’s next for me

Just wondering if anyone had similar experience, back to see my rheumatologist Tuesday, but I don’t know what he will do for me as my body is obviously rejecting the biologics

When I get these injection site reaction the pain and itch and swelling is so bad then on day 3/4 I get the urticaria and chills, I’m just afraid if I keep going I will have a really bad life threatening reaction

Any feedback of similar situation would be welcome x

[KittyJ]

Do you use the wipes before injecting?

[Eileen1980 in reply to KittyJ]

No I don’t I use to with the enbrel but no I haven’t used them for a while

[medway-lady]

I got dreadful, nasty sore eczema with Abatercept, but ok with Etanercept. I was shocked it could affect my skin so badly and hurt too. It started on left shoulder and spread to all limbs and the cortisone cream, moisturiser and steroids didn't work much then I dropped a bit , slipped and broke my leg and ankle. I then refused to take it anymore so I'm waiting to find now whats next, so I can really sympathise. I don't know what the solution is yet.

[virtualreality]

I don't have similar experience with biologics I can share though did have major problems with urticaria before being diagnosed with RA and starting treatment, it was rough.

One thing I'm wondering, as you've had these awful reactions from a number of injectable biologics now, is have your rheumatology team ever considered JAK inhibitors for you? A number are taken in tablet form.

As a non-medic I've no idea if they would be suitable of course, but can't help wondering if they could be an option that might avoid some of these problems for you. Just a thought. I really hope you do get an answer to this very soon.

[Eileen1980 in reply to virtualreality]

Thanks for your reply

I will ask my rheumatologist on Tuesday when I see him and will look into this myself x

[Madmusiclover]

I haven’t experienced this no but JAKS are tablets. You could ask about moving to a JAK.

[Blackberrywine]

Yes I've experienced the same thing. It's awful and I feel for you. I don't take anything these days, as I seem to do better off drugs. Things ain't perfect for sure. I do have some pain and exhaustion, but it's manageable. It's frustrating I can't do the things I used to do though.

I hope you find something that works for you soon.

[Eileen1980 in reply to Blackberrywine]

Thanks for your reply

It really is frustrating at the moment my joints aren’t to bad definitely manageable on ibrufen now and again but it’s my psoriasis that’s starting to come back really bad underneath my finger nails and toenails, so I’m just hoping that I’ll be able to take something when I need to when it really gets out of control

Going to ask about the JAK on Tuesday when I see my rheumatologist x

[Blackberrywine in reply to Eileen1980]

Good plan. Yes I have psoriatic nails. It's a right pain. My toenails fall off if I walk too far. My psoriasis flared up after stopping drugs. In the end I made my own cream out of tallow and smeared myself in the stuff! It's not too bad now.

Good luck with the Jak.

[hellykay]

I had horrendous site reactions, ended up living on antihistamines. Turns out I was allergic to the preservative used in the pens. I was changed to the injections which are made up each time at home and all was well. They are not available with Benapali.

Hope you find something useful soon.

[Eileen1980 in reply to hellykay]

Hi thanks for your reply

I done the prefilled injections too and the pens it doesn’t mater what I use I still get the bad reaction and urticaria it’s a nightmare

So I’d say it’s just my body rejecting the biologics as I have tried 4 different ones in the last year and all the same reactions 🙄

[hellykay in reply to Eileen1980]

Oh that's not good, I'm sorry you're going through this. Maybe push for a JAK inhibitor, I'd hope that your Rheumy was already considering it by now. I'll keep my fingers crossed for you.

[hellykay in reply to hellykay]

Just read above that's what you're going for, hope you get it and it helps.

[STILL-I-RISE26]

I have had problems with my biologics too. I am currently on Orencia. I have tolerated this one so far, Thank God! It’s been about 2 yrs.

[J1707-]

I too have inflammatory arthritis heavy on the the psoriatic. I have had problems with etanercept, adalimumab,rituximab all had extreme side effects and permanent damage. JAKs suit me better I don’t get side affects.Barcitnib stopped working just started Rinvoq in the last few weeks . No side effects and so far so good things starting to improve. Don’t give up . JAKs are tablets so no injection reaction. Have a chat with your rheumatologist and see if he thinks this might be the answer. Good luck

[Eileen1980 in reply to J1707-]

Thanks for your reply

I spoke to the rheumatologist last week and that is what he said JAK inhibitors will be next for me but not for a few months until the Taltz gets out of my system as I have severe urticaria now

Last time I got this it lasted for a few months and I was just more or less over it when I took the Taltz 2 weeks ago and now I’m back with the worst urticaria I have ever had

Hopefully when the time comes for me to start the JAK’s I will be able to tolerate with no reactions x