Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Am I too worried?

We've had people experience some really bad side effects here, as well. Thing is, every person responds to every med differently. So, while it's good to look at these things, you also have to look at them in a real world sense. If that site was for people who've had bad experiences, then that's all you'll see there. Know what I mean?

Regardless, you have to do what's right for you. Really, in the end, that's all that matters.

Hugs,

Maggie, if you're concerned about the respiratory effects, please, for your sake as well as your patients' sake, don't start an Anti-TNF. My new rheumy has said that while they treat the symptoms, there is no real data to support the belief that they slow AS' progression.

I was on Remicade for a year. It stopped working after only 1 year. During that year, if anyone sniffled near me, within a day or two, I would have a raging respiratory infection that would lay me low for at least a week solid. My only exposures were my husband and 2 kids (neither was in school at the time, nor went to daycare). I can't imagine how sick I would have been or how often if I had your exposure risk level.

Sunny,

I'm like Kat and Mig only I have only been on Remicade for 14 months now.

Yes, you have to be careful and vigilant about things, i actually love going to my Drs. cause I have that down so when i show up they rush me in a room to get away from all the infected people..lol

Remicade has pretty much saved my life. I spent 12 years with a Rhumy who didn't have a clue nor did he really care, sure he would prescribe all the steroids and hydrocodone and shoot pred in any joint I wanted but didn't work WITH me.

I left him and found and Immunologist, we did alot of tests and spent alot of time together. By the time I got to him I could barely walk, and I have been on every kind of pill made even MTX all to no good.

He decided pretty quick we should do a biologic and I agreed, afraid of the risks but the funny thing is I actually get sicker when I am off of it. I once had pneumonia/bronchitis 11 times in 14 months with 3 hospital stays BEFORE Remicade.

Since I have been on Remicade I think I got pneumonia 1 time, that's pretty excellent 1 time in 14 months and when they find out Im on a biologic they don't mess around.

I would check out all of your options, if the diet works do it. I would have loved to but It wasn't giving me enough relief, you kind of have to decide whats good and right for you. I certainly wouldnt let people scare you, do your research, be informed and choose. I know some people have bad things happen and if I ever do I will have to stop but for now it has made my quality of life go from less than 25% to around 65 to 75% and that is AWESOME compared to what I use to be.

Lisa

Hi Cap.

Actually, the biologics do slow the progression. They don't halt it altogether, necessarily, but they do slow it. Not sure where you're rheumy got his info, but thought I'd chip in my 2 cents worth.

I am sorry you had such a bad reaction when it comes to infections, and that it only seemed to have worked for a year for you. Sadly, we are all different, so no two of us will respond the same way. I hope you find something that works as well as Remicade did in the first year.

Hugs,

Thank you guys for all your feed back. I am sorry I have been slow to respond. I did start the Enbrel. Thursday will be 7 weeks. And it worked great til week 5 when I started have reactions at the injection site. Very large welt that was red and hot and angry looking. And would itch very bad as though it was an allergic type of reaction. Corresponding to that I also felt less relief with my symptoms. So I am off to the Rheum tomorrow because she doesnt want me on it anymore. We are going to discuss the next med to try.

Any one have this type of reaction?

Maggie, I am so sorry that reaction happened. It is really hard to give up a medication that helps you to feel better. I hope your Rheumy can come up with an answer to something that works and doesn't give you any problems. I just started Humira and I love how it is working. I feel 20 years younger.

Donna

I had a welt like that after my first injection, but never since it's been fine. When I called Enliven about it, the first thing the nurse asked was, "Did you move the needle while it was in your leg?" Well, of course I did because I wasn't prepared for the pain! Damned near jumped through the roof and it took all my willpower to keep it in my leg until the dose was in.

The nurse told me I'd broken the capilliaries, the swelling would go down and I'd have a great bruise for a while. She was right on all counts.

I do know that it can take months for the full effects to hit. I also know from having watched my sweetie on it for the better part of two years now that it does seem to be hit and miss. Most weeks it's great, then he'll have a week when it just doesn't seem to have done anything. The following week it's fine again.

I'm surprised your rheumy wants you off after only one reaction (which might be dealt with using Benadryl) and after only one week of less than optimal results. Seems a little hasty to me. But I don't know your medical history and he may have other concerns.

Just a few thoughts.

Hugs,

Honestly I think the risk is pretty low. The way i see it you take risks every day. Just driving a car has got to be way more dangerous then the risk from the drugs. One thing to realize is that these companies really have to cover all bases as far as warnings go and a lot of times going overboard is the only way to protect themselves, even if there is a very low risk. Since I have started I have had cuts and burns that have healed fine, but then again I don't know if that's the same as an infection. Anyway even if you do get sick you can stop til you get better. One thing people often regret is being scared to do something they should have.

injection site reacions are very, very, very common amongst newbies. ...like 40% have 'em sometime or other

they are ugly...they are not themselves dangerous. it is not a sign of an infection...my rheumy suggested that most are caused by amateur needle-jockeys who get better over time and/or it is a small sign of the body reacting to a live bioagent.

generally, folks on enbrel for years get over having isr's.

good luck
keep shootin'

Thats pretty common for me, I get exactly the same thing. I believe it to be what they call site reaction and nothing more, but I'm not an expert on this, better to consult your doctor.

I didn't get this on my first Humira injection, I only got this after several injection,

For me the "welt" usually appear 2-3 days after the injection usually about 1-2 inches long. It gets itchy as well, feels like a mosquito bite but it usually goes away within a few days.

Since it goes away on its on I assume its nothing to worry about.

Funny thing is sometimes I get it, and sometimes I don't.