good and bad humira experiences?

[snowbound]

Hi all,

Thanks to you all for being here. I am taking enbrel and imuran and the docs are looking at changing me to humira. I also have a friend in the same boat and she developed or had a heart problem exacerbated by enbrel. Understandably she is skittish to try the humira. First: her heart condition presented with a rapid heart beat and shortness of breath and improved when the enbrel was stopped.Anyone else have this happen? Next: as reading the list of side effects that come with any med can be daunting she would like to hear people's experiences with humira...both good and bad...to help her assess what's going on when she starts it. She would like to catch any potential side effects quickly.

Thanks so much for any advice.

snow

[RichJ]

hi snow,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you. more will come through and help you

have a good night all

richard

[wiredown]

I had same problem with embrel, also had sinus infections from it. I switched to raptiva with no problems or side effects. now im going on humira. I have been with out injections since april of last year. Now that hurricane season is over im going back on meds. I travel alot during storm season.



wiredown

peace out

[Kimbercat]

Hi snowbound,

I've been in 2 clinical trials for Humira with great success. My first trial was in 2003, and I went from about 18% coverage to less than 1%. That was the first time my scalp has ever been clear in over 20 years! :eek: :) I then got into a 2 year follow up study which started in the fall of 2004, and I'm still in that one. I've had absolutely no side effects with this drug. I've also found that usually when it works, it works very quickly. I noticed a difference in less than 2 weeks after starting it. Unfortunately, I haven't gotten quite as impressive of results on this second trial, but it is still working very well for me. I just have stubborn spots on my scalp and in my ears. I truly think that if the protocol allowed it, I would have improvement there as well if I could take the Humira on a weekly basis, rather than every other week, or if the dosage was a bit higher due to my weight.

I've heard of very few side effects from this particular drug, and for some people it works very well. I hope that if you decide to try it, it works as well for you as it has for me. Good luck. :)

[Saxmom]

I haven't been around much lately but tonight I saw this post. I was on Humira for about 5 months two years ago. I really liked only injecting once every two weeks but boy does that sting!! I started having flu like syptoms right away. When I would discuss this with my doctor at the time he would ignore what I was saying to him. After 4 months of getting sicker and sicker, I called my PC and asked for the name of another rheumy. The only other one he knew of was an hour away. I called and made an appointment for the first available time. When the new guy asked what meds I was currently using and how they were working for me, he was shocked that I was still on the Humira after 5 months of being sick. He asked about Remicade and I told him that I had been on that for 6 months with the same results. I was sick and my PA was out of control. The new doc started me on Enbrel with Immuran and while it hasn't all been pleasant I do feel better.

There are a lot of different side effects and the doctor should tell you the ones that occur most often.

Good Luck and as you have probably seen around here a lot, remember that each treatment works differently for each person.

Paige

[smsspeech]

HI
I WAS ON REMICADE WITH METHOTREXATE FOR 1+ YEARS. WORKED WELL UNTIL LIVER ENZYMES WENT UP AND MY PA BROKE THROUGH AT HIGHEST DOSAGE. SWITCHED TO HUMERIA FOR 4 MONTHS. NEVER CALMED DOWN MY SYMPTOMS LIKE REMICADE AND THEN DEVELOPED "LUPUS-LIKE" SYNDROME. I'M BACK ON REMICADE WITH SOME IMPROVEMENT BUT MY ANA LEVELS HAVE STAYED UP. FEELING LIKE LUPUS. HE SAID THAT THIS HAPPENS SOMETIMES WITH TNF INHIBITORS. HUMERIA DID NOT WORK FOR ME. I GUESS I SHOULD ALSO ADD THAT I AM ONE OF THOSE IN THE 1-2% THAT HAVE SIGNIFICANT OCCULAR INVOLVEMENT AND THE HUMERIA DIDN'T TOUCH THAT. GOOD LUCK!
SUSAN

[snowbound]

Hi again,

Thanks for all the info with your experiences. I am wondering about the lupus like syndrome for myself. My friend's doc has decided to check further into her heart before starting her on the humira and my doc wants an endoscopy and to figure out my chronic sore throat first. Man this all gets complicated. Do you need to be an NPF member to post messages? My friend is from australia and would love to post and will join if need be. I like your forums here too.

best to all,
snow

[oakrai42]

I've taken 2 shots of Humira now and the only issues I've had are:
A) they sting terribly, not like Enbrel, even after leaving it out for a while... I'm leaving my next shot out for an hour to see if it helps;

B) I get anxious after taking the shot, but it goes away in a couple hours. That could be a completely psychological thing on my end, but who knows. This happened to me with Enbrel at first, but then subsided. I have a feeling it's just my brain getting used to the aspects of new medication;

C) The first injection site got itchy for a day or two after injecting... no biggie there. 2nd injection site (last night) is a little pink, but I've had worse (I screwed up my last Enbrel injection, after over a YEAR of being on it too, and ended up with a bruise 3 inches long and 2 inches high... D'OH!)

So far no positive or negative results to post on though.

-Steve

[vlu28]

The positive: For me, it really works for the PA. Before I started it in October I was so, so miserable. Now it is like I've had a 180 degree turn around. Sure, I still have pains now and then, but nothing like before. I couldn't be happier with the results!

The negative: The shots sting. I mean, they really sting! But, it's a pain that is well worth it (in my opinion anyway!) Besides, the sting only lasts for a few minutes. The only other negative I can think of is that I'm having injection site reactions. I have nickel-sized red patches for each and every shot that I've taken. The oldest ones are finally fading, but I have a few that have turned scaly. Psoriatic even, though I hate to think it. Perhaps it's a Koebner response? I've started dabbing Clobetasol on the spots and that seems to help. I see the rheumy next month and will definitely ask her about it. Still, for me the good far outweighs the bad at this point and I'll gladly take the spots as long as the PA stays away!

Vicki

[Leonessa]

Hi all!!
I'm writing to you from Italy (Florence). Excuse me for my bad English but is important for me communicate to you that Enbrel works very well without side effects. I'm taking it for thirteen months and I'm very well. Some months ago it was associated with Methotrexate but now I take only Enbrel two injections weekly. I'm very satisfied. After I couldn't walk, wash my teeth or dress myself! Now I'm a new person. I'm sorry if for somebody this drugs don't work as they hope, but I think that Pharmacogenomic will hope us in the future ( but perhaps in the US exists already or not?).
I'm sorry for SmssPeach. I have read that he or she I dont' know) developed a Lupus Like Syndrome. Are there many case of this type? In Italy this drug are new, for this Im here with you. I learn from your experiences thanks forn this...I' m part of an italian Association of Psoriasis but of yours, too.
Because into this disease doesn't exist frontier. Ithink that!!
By for now!!!!!!

[RichJ]

hi Leonessa,
im glad you found some thing that help you with your p and welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

have a good night all

richard

[oakrai42]

UPDATE... well, it's 3 days later from my 2nd shot of Humira and I feel weak (yesterday was worse) and fatigued and terrible (breathing is tiring).... I don't know if it's Humira related or not (it's gotta be), but it may be back to Enbrel for me, we'll see. It's like the original anxious feeling I had turned into fatigue... hmmmm...

The worst part... it was sunny and almost 60 out today and I couldn't go for a bike ride 'cause I was too tired... sooooo ****** :mad:

-Steve