Help?! Humira lymphona?? Side effects.....

[stacieloup]

Hi

Just on my 8th week into Humira

Had my loading doses and now on my 2nd shot at home tomoz

Had a bit of joint pain bit tired after shot but nothing bad however i have a few concerns....aby answers??

1) iv heard it causes lymphona? Wats the chances il get it and wat checkups do i need to keep on top of makin sure i dont have it or get it

2) im also on Imuran 75mg is this safe to use with humirain regards to gettin lymphona more etc?? Im hopin to cme of it been on it 5 yrs

3) im still bleeding an slight pain.. Loads vbetter tho but will this get better as the humira kicks in more??? Does it take long to really start working???

4) pregnancy and humira anyone???

5) whats the longest ppl have stayed on it for??

6) been on remucade/infliximab, all the usuals plus steroids on 2 flares, Imuran and now Humira? If this doesnt work is my life ova?? as in nothin else in UK i can try??

7) i suffer with cinstipation onlt had bad D on my 1st flaee wen i was dx 5 yrs ago with citis changed it to crohns 2. Yrs later...

No suregeries as yet only 27 Sooo hope myoy otha option isnt a bag

Anh help an words of hope,????? xxx

 

[Natalie38]

Hello,

I have been using Humira for almost three years.
In regards to your question about the other meds your on, I am quite sure your docs would've made sure that it was safe to blend. But, if you are unsure, ASK!! It's so important to advocate for yourself with your docs. What I do is write down any questions I have for my doc visits and bring it with me. It helps.
Pregnancy and Humira. Probably not good. You would need to go off Humira for the term of your pregnancy.

I have never had any side effects from this drug. In fact, my life has become much better and I feel great!

Looking forward to seeing you around here!!!

 

[tiloah]

Pregnancy and Humira. Probably not good. You would need to go off Humira for the term of your pregnancy.

I don't think this is true. It's FDA category B, which means it "is not expected to be harmful to an unborn baby." It's worth talking to your doc about, but you probably wouldn't have to stop treatment.

The risk of lymphoma is extremely low. Your doctor balanced those risks in considering it for treatment with the benefits you will receive. I would try not to worry about it. I was on Humira for three years and I never even thought about it. There is some thought about whether these drugs actually increase lymphoma risk or if it's a correlation with our disease - in other words it's actually Crohn's that increases our chance of having lymphoma, but they see it in the research because everyone who it is tested on HAS Crohn's. In any case, like I said the risk is very, very low. But it is not zero.

 

[Natalie38]

Hi,

Before I started Humira, i was on Enbrel. I was told that I shouldn't become pregnant while I was on this. I ended up getting infections from the enbrel, and was then put on Humira. The drug does the same thing, but in a different way. Thank goodness I have not had any reactions to it.
I guess I assumed that the possibility of not becoming pregnant while on this stayed the same.
I am so curious now!! I am going to look into it.

Thanks

 

[tiloah]

Enbrel is category B as well. While Humira, Remicade, Cimzia, and Enbrel use the same mechanism, Enbrel is the only one known to cause a serious brain infection that can be fatal. This may have been what your doctor had in mind when she or he told you that. It's also possible that we have more information about these drugs now than when you were told that. (Not knowing how long ago that was). It's also possible your doc just wanted to err on the side of caution or simply didn't know. I'm sure even when drugs are considered safe by the FDA, a doc will still want to avoid prescribing it to save their own ***.

I didn't mean to imply that you wouldn't be advised not to take it, just that that wasn't a certainty.

 

[tiloah]

It seems I can't edit my post but I wanted to clear up some misinformation on my part. Enbrel is not the drug (of the biologics) known that it may cause a serious brain infection. That is Tysabri. Sorry for putting the wrong info out there!

 

[saidinstouch]

its listed as 1 in 1000 chance, but is most likely much lower than that. It is also a risk for cancer to have prolonged, uncontrolled inflammation, so its a tradeoff of risk and benefit. Your dosing and meds are pretty much standard that a lot of people are on in that combination and you should be getting blood work done every 2-3 months to ensure your blood levels are normal (for lymphoma detection) and your nutrient levels are good to monitor disease activity. As far as pregnancy goes, there aren't a lot of studies or known information for remicade or humira, but I don't think there is a lot of concern among doctors. You would want to talk to your doctor about all your meds and effects on pregnancy.

 

[IAmTheWalrus]

Smoking causes cancer, an adverse affect of any anti-TNF can cause cancer but it's VERY rare, 4 in 10,000 people using said drug contracted Lymphoma.

I also doubt being on the drug for such a short time would have such a drastic adverse affect.

Just my 2c.

 

[stacieloup]

Thanku all!!! So so so helpful!! Xx

 

[outlier]

my understanding is for both remicade and humira the risk doubles but is still under 1%. so still very very unlikely!