Sore Throats

[karj]

Hi Everyone

Ive started Humira since mid-feb. Just wondering if any of you were experiencing bad sore throats? In the last four weeks I have got 2 really bad sore throats and have had to go on antibiotics, I have my second one now. I never got sore throats this bad until I started Humira, I had a temp with both of them. Also i have noticed I have four white spots in my mouth, which my dentist says are not mouth ulcers but I only got dem since I started taking humira?

I am really starting to worry that the Humira might not be good for me at all? I had a terrible episode after taking my loading dose of 160 mid-february, basically I had been in hospital on iv steroids and the plan was stop the steroids and take the humira, that following day after taking the loading dose I started shaking uncontrollably and had temp of 41 degrees, pains all over and my g.p sent me to A and E. Doctors at the time did not know whether i was having reaction coming off steroids or taking humira. Apparently what had happened was I got sepsis from the iv drip that I was getting the steroids through it was all inflammed. Had to go on a strong dose of antibiotics on drip for a week. My next dose of humira went okay but then I was finding the two weeks too long, because from wed onwards I felt terrible so now I am taking a shot of humira everyweek 40 mg. I am bleeding all the time, I am having only one BM a day which is an improvement because I had whole bowl inflammation and was going 9/10 times some days but the bleeding has not stopped. Does it take longer for it to work in some people.

I just feel that I could be really damaging myself with this stuff. Do any of you worry about the long term . i guess if it was working I prob would not question it but i feel I picking up every infection. I did not have this experience with remicade but unfortunately with the remicade I went into anaphylactic shock on the 9th infusion! Nurses said it was so strange it always happens on the first or second.

 

[theOcean]

We're prone to sinus problems, yes. It's unfortunate but true. Having a temperature is worrisome, though, and the white spots are possibly the sign of fungal infection too. If you feel like you're too immunosuppressed, you may have to talk to your GI.

Are you on any other medications? If you're just on Humira, could you try going on an immunosuppressant instead, like Imuran, 6mp, or Methotrexate?

If you do continue to take Humira, you could receive it with Benadryl/antihistamine and/or steroids to prevent any bad reactions.

Humira worked pretty quickly for me, but it sounds like it may be best for you to go back to the hospital for awhile and get on some steroids while you wait to see about the Humira. I feel like it's too much of a risk with all your symptoms right now.

 

[karj]

Are you on any other medications? If you're just on Humira, could you try going on an immunosuppressant instead, like Imuran, 6mp, or Methotrexate?

If you do continue to take Humira, you could receive it with Benadryl/antihistamine and/or steroids to prevent any bad reactions.

Thanks for reply . no I am not on any other medication. We have tried steroids, asacol, pentasa, 6mp, steroids again, steroid enema, pentasa suppositries, remicade (which was fantastic in the beginning, stopped the bleeding immediately, was having such relief until my stupid body decided to build up anti-bodies against it). Steroids haven't worked well for me they have never stopped the bleeding. Humira was my last hope he says to get it under control medically . I am scheduled for another colonoscopy but have not received appointment it will probably be in 3/4 weeks time. I am due to take my humira this evening but I still have a touch of sore throat so don't know what to do and it is a bank holiday so GI or GP not on

 

[theOcean]

Remicade and Humira aren't the end of your options! There's other biologics like Cimzia, vedolizumab, Simponi... And everything always has to happen on the weekend, doesn't it.

Otherwise, you could maybe try Methotrexate as a immunosuppressant.

 

[valleysangel92]

Hi there... Isn't it true that it always happens on the weekend, and typically a long one too!

I don't have experience with biologics myself, so I can't help you with the side effects, but I know I've seen others posting about using caution if you have signs of infection or illness.

I noticed that you are in Ireland, and although I'm not 100% sure, I think your drug licences will be pretty similar to ours in the UK ( they'll be the same if in north I think, but might differ slightly in the ROI) .

This means we have fewer biologics available to us.. As far as I'm aware, the only biologic drugs licenced for crohns here are remicade and humira, although cizima is used for arthritis and other conditions.

Do talk to your doctor about it though, you could have more available than us, or things might have changed very recently.

Methotrexate may be a good option for you, but again that relies on your doctor being willing to prescribe it.

 

[karj]

Yes I am in Ireland and my crohn's guy is only really getting used to humira now he was only prescribing remicade before that, he has never mentioned any of those other biologics to me. he hasn't mentioned methothrexate to me. I think I may have to go back to the drawing board with him. I am wondering about trying the elemental diet to see if that would help the humira get on top of bleeding? It something I must also talk to him about

 

[n00b]

I have been on Humira since Jan this year with very mixed results.

I have been suffering from a terrible sore throat and sore tongue/mouth for a couple of weeks.

Do you think this could be an infection?

 

[karj]

Maybe you need to go on antibiotics to clear it. My doctor warns me that I have to go to her anytime I get a bad sore throat, apparently they have to monitor white blood cells to make sure that they are not gone too low. Have you had bloods done?

 

[n00b]

I went to my GP today.

he confirmed I have tonsillitis. Ordered me to the hospital for a blood test immediately to check my white cell count.

They were OK thankfully and got prescribed a heavy dose (8 tablets a day for 10 days) of penicillin.:ybatty: