Send me good vibes

[SnikPlosskin]

Tomorrow I have my first infusion of a different drug. I’ve been on infliximab for 14 years. They think it’s not working as well any more so we start a different “mab” drug. There is a significant danger of having a reaction. They have to have a crash cart for the first infusion. Apparently some people have had sudden cardiac arrest.

I’m hopeful this new drug works. I changed insurance so I can’t go back to the old drug. I have to admit it’s a bit scary. My life has revolved around the other drug for so long. Reactions are rare-ish.

If it goes well, I’ll be able to just get injections at home. No more five hour infusions. However I read the shot hurts like hell. Oh well.

[StaticCling]

I just said a prayer, hoping things go perfectly for you Pete.

[Steve_R]

What are you going on?

[LilRedCorvette]

Originally Posted by Steve_R

What are you going on?

This ^ which mab are they giving you now?

I was on infliximab for about 6 months...sometimes my BP dropped to 75/45 during the infusions

[Little Red L98.]

Damn. Good luck man.

[04 commemorative]

Good luck and don't forget to be IB4S

[RMVette]

Best wishes and get better soon!!!

[Steve_R]

I’ve been on Stelara since October. No side effects from the first infusion or the subsequent shots, which are easy and nearly painless. Next shot is Friday.

[SnikPlosskin]

Originally Posted by Steve_R

I’ve been on Stelara since October. No side effects from the first infusion or the subsequent shots, which are easy and nearly painless. Next shot is Friday.

This. Good to hear. What size is the needle on the self injections?

ustekinumab

[SnikPlosskin]

Originally Posted by RMVette

Best wishes and get better soon!!!

Thanks. I appreciate that.

I’m actually not very sick right now. My biggest complaint is fatigue. But otherwise I feel OK. More or less.

This is a progressive, incurable disease so I won’t ever get better. It is a daily challenge.

There are periods of time where you are in remission and other times when the disease is active. Then there are the really fun life threatening events. You hope to get through those. At some point you don’t get through.

The studies are that people with Crohn’s disease live almost as long as people without the disease assuming they are treating it. These biologic drugs are a damn miracle. But you still have surgeries and you occasionally wake up in a hospital. (Which sucks but not much you can do about it). Most die from infections caught (guess where?) at the hospital. Or from septicemia because part of the fun is your gut splitting open.

I only share this in the spirit of helping people understand it. It’s very ****ed up.

Steve had surgeries which helped him. But he still has to stay on top of the treatment. My surgeries haven’t helped make the disease go away, although they did keep me from dying so there’s that. Some people get the diseased area cut out and never have a problem again. It’s different for everyone. Unfortunately the damage to my gut is spread out through my entire small intestine. You can’t cut it out.

My version of the disease is likely somewhere in the middle. Some people are in REALLY bad shape.

[Steve_R]

Originally Posted by SnikPlosskin

This. Good to hear. What size is the needle on the self injections?

ustekinumab

It’s a very small needle on a small syringe. It’s not a pen like Humira. It was nearly painless when I did my first shot at home. As with a lot of drugs they list all kinds of possible side effects, especially with the first dose, which is an infusion. I had no side effects from that either.

It’s a piece of cake. Hopefully it works for you.

[gs568]

Good luck.

[SnikPlosskin]

Originally Posted by Steve_R

It’s a very small needle on a small syringe. It’s not a pen like Humira. It was nearly painless when I did my first shot at home. As with a lot of drugs they list all kinds of possible side effects, especially with the first dose, which is an infusion. I had no side effects from that either.

It’s a piece of cake. Hopefully it works for you.

Me too. The last two years have been hellish.

[Olustee bus]

Best of luck to you. It could be the change you need. Hope so.

[snide]

Marky Mark Good Vibrations 1991/(HD/HQ) - YouTube

The Beach Boys - Good Vibrations (Official Video) - YouTube

Best wishes Pete!

[Strats-N-Vettes]

Originally Posted by 04 commemorative

Good luck and don't forget to be IB4S

I'm gonna go out on a limb and say this is one time he doesn't wanna get in before Snide....


Best of luck snik, snake, Jefferson, Pete.

[BayouCountry]

Good luck today. I hope you get your treatment dialed in.

[mrvette]

BEST of luck to you man, take care....

[Giraffe (He/Him)]

Good luck MoFo. Let's hope this improves your quality of life a bunch.

[LisaJohn]

Thoughts, prayers and best wishes too!