Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Remicade reactions?

I asked this in my Remicade follow up post, but haven't received any answers on it, so I'm giving it its own separate post.

Seems I'm slightly allergic, so they have to give me benadryl before every infusion. I didn't have a bad reaction, but just slight itchiness here and there. Has anyone else had this? Does it go away after a few infusions?

Thanks,
Hugs,
Kath

I am SO scared about starting this. Are you glad you did or not? Any encouragement? I am not sleeping tonight after stressing about it earlier this evening.

Thanks.
Possi

The dr. did tell me that the Benydrl is quite common with the infusions for slight reactions and that sometimes he uses some IV steroids.

Hi Kat,

I didn't have any ichyness, but an odd dizzy nausea sort of sensation after my initial infusion, which diminished within 3 days. By adding Benadryl, I've had no reactions since... except of course the Benadryl makes me sleepy.

Sometimes I still get these spacey dizzy spells but they don't seem to be related to the Remicade now, and my docs don't think so either. They feel it might be a mechanical problem in my cervical spine that's a result of being in less pain and therefore more active.

When I was concerned about a possible reaction, I believe someone in here mentioned that an allergic reaction was most apt to occur at the 2nd infusion? Not sure I'm remembering this correctly or not, but if you're fine through that one then things should be ok. The nurses say the reaction most worth worrying about and seeking help for is difficulty breathing. Breathing is quite useful. That is why they keep you for a bit afterwards, just as a precaution for monitoring. Apparently, it's also easy enough to counter if need be.

Hope by next time the ichyness is history.
Hugs,
mig

Hi Possi,

I've been following your concerns and struggle to find a reasonable comfort level over the option of starting on a biologic med, but have hesitated to reply since it really is such a personal decision, ultimately. I can only share my experience starting Remicade, and the thought process that led up to my choice.

Never thinking a biologic would be accessible without insurance, I was a little unprepared when my doc suddenly asked me straight out if I wanted to start on one. There was some application process for funding, but he seemed confident that I'd meet all the qualifications.

He appeared to anticipate a 'Yes' answer immediately (like he was offering me a life ) and after asking a couple of questions on potential risks, about 3 mins later I said yes... yes! He explained these meds had already been around for some years (>8?) and that some adverse troubles had already been sorted out. Being pre-screened for latent TB was important. He explained that the long term risks were still unknown, but that the benefits ~for AS patients (more so than RA patients)~ were incredibly promising.

For me it came down to weighing the risks vs rewards. To continue on as I was (on nsaid + dmard) I recognised there was basically a 100% chance that my health would continue to decline. My quality of life was sliding downhill, the fusion process was marching on, and retaining an ability to keep working (another year?) wasn't looking good.

I figured the highest risk to my health was to do nothing. Remicade on the other hand, demonstrated very low short term risks, and long term risks were unknown. So in effect I was trading a known negative outcome, for an unknown positive or negative outcome... and therefore giving myself the only chance at a positive.

I've now been on Remicade for 10 months. It *feels* like the AS switch has been turned off, or more like a dimmer switch turning down. It's exceeded my hopes by far. After 4 days, I was in the least amount of pain I'd experienced in any single day, over the last 25 long years, and it keeps getting better!

I haven't been sick yet, even when my guy developed a nasty cold. I've had one tooth infection apparently caused by a hairline fracture (they felt was unrelated) and increasingly believe that something that feels this *right* surely will prove to be beneficial for me.

We all have such unique factors that weigh into making such a treatment decision; our level of comfort vs fears, our current health status and predictors, timing, the accessibility to various meds, and confidence in our healthcare providers...etc.

Possi, if you're feeling too uncomfortable then perhaps giving yourself more time would be a good plan? Either way, I wish you peace of mind in whatever path you choose for you!

Hugs,
mig

Thank you so much for your wise answer to me. Yes, it is a personal decision and I can't even talk to my hubby about it because I don't want him to ever have a guilt feeling if I have a problem. I am feeling terrible so I am thinking I am going for it. I would in a heartbeat if I didn't have so many other things going on.

I feel so bad I have to go. I will write more now. If I could reach through this screen I would hug you so consider yourself hugged from this Okie Grammy. )

Thank you.
Possi

eloquent hugs

Honey, I have absolutely no doubts about my decision to start Remicade. The benefits of it have far outweighed the potential and/or actual side effects. Hell, I can stand a little itching. It's nothing to being able to live my life without the constant energy drain, without the constant pain (except fibro, which I was already diagnosed with almost two years ago and which has also died down), without the strain of having to live my life under the constant onslaught of this disease.

I know that we all respond differently, so I cannot say fully that it will work for you as quickly or as well as it did for me. All I can say is that I have found it more than worth any risks.

I googled a Health Canada report on it and found out that, if I did my math right, the chances of lymphatic cancer are approximatley .05% and the chances of a malignancy of any kind are approximately .19%. Even tho, admittedly, my numbers are probably a bit off and only based on the one study, still, Possi, those are extremely low odds.

All you can do is try, right? But please, don't lose any more sleep over it. Nothing is worth putting more strain on your beautiful soul.

Many hugs,

Thanks, Mel. Yeah, the immediate effects of the Benedryl are worse that the Remicade!! And I have to function at work after the infusion. Wouldn't be so bad if it was just the Remicade, but the drowsiness from the Benedryl is a killer. Did you know it's possible to type in the Klingon language? It is. Try falling asleep at the keyboard some time.

The nurse at Dr. Inman's office said that if there was going to be a reaction, it would have occurred by the third infusion. Hopefully, the itchies are all the reaction I'm going to have.

And yes, Mel, breathing is important.

Thanks again, hon. I appreciate it.

Many hugs,

I have decided that I am going for it. I check with my insurance and they will pay for it. They just need a script for 3 months worth which will cost me $75.00 then they said my dr. needs to just bypass billing Medicare for the meds and only bill Medicare for the acutal procedure. I called my dr.'s office and they said, "Oh we don't work that way. We don't give out scripts." I said, "That's the only way I can do it" and they are supposedly in discussion today. If this dr. tells me this is the only thing left to help me and I prayed my way through this decision and he won't help me get it the way I can afford it; then I will be moving on to a new dr. Can you believe that? My insurance company is trying to help me through their "Special Needs" department and here I have a dr. who isn't wanting to help me. Can you believe an insurance co wanting to help and a dr. refusing the help?

Oh well, guess I will wait and see. Supposedly they will be back with me this afternoon. If not............??

The people in the storm area are having a lot more problems than my problem. I am trying to stay focused on that prayerfully today instead of my one little problem.

Thanks for your support.
Hugs.
Possi

Hi Possi, I'm so glad you are going to give the Remicade a try. I know how I felt when I was basically "TOLD" I was going to apply for it, by my Rheumy.
Your doc needs a good ole kick up the pants in my opinion. Over here , they sent me out the script in the mail and I got the med from the local chemist, who was rather excited over how much this stuff does cost!
I was very very anxious before my 1st treatment. Anxious enough to go looking for help on it, and here I am
BUT remember that those who administer these meds are very skilled and very professional and once I sat in that chair I felt a bit more relaxed over the whole thing.
For myself, the Remicade has been wonderful, I've caught the old cold that knocked down at few at work. I think I had one day off with it. The marvellous thing was, even with a bad cold I felt great. In the past it would have knocked me down for days with my AS being active. The two didn't go well together.
So my fear of being more prone to catching colds etc has gone. My overall feeling of wellbeing is just the best.

Now it's possible to actually move around a lot more which will help loosen up those bits that have seized up a bit...

I do so hope it helps you as much as it has helped me and others. Hang in there and know we are all behind you.

Take care and I hope to be hearing some grand news from yourself

Cheers
Tim