Possible delay in my remicade

[polarbearfans]

I hate all these medicines. I was already having night sweats from either the 60m prednisone or the 125mg imuran, possible side effect for both. But of course I get my annual sinus infection (a day early according to my urgent care doc since I was in the previous year one day later lol) and now I have to get a bunch of tests before I can start the remicade because I had a fever and was put on antibiotics. I see the doctor for approval one day before my first infusion. Hopefully all goes well and I can get my infusions on the 8th.

This is all so frustrating. I'm taking a ridiculous amount of pills right now. Cannot wait until I am off the prednisone. Every time I finish it I get put on a stronger dose. I personally wanted to wait and see if the remicade would knock out the rest of bleeding but my doctor is very aggressive. I guess it is good change to the passive and dismissive doctor I had earlier this year. I went from very mild UC to very severe in less than a year because he refused to listen to what I was telling him I was feeling... He just kept saying it was a mild case and did not believe me when about anything I had to say about symptoms worsening and the pain. Now I'm taking the meds he said he rarely puts people on. Luckily I was able to get the doctor I have now. He is amazing and talks about everything I've put on my to-talk-about list before I even mentioning anything. My doctor technically couldn't refer me outside his network but we worked it out. He didn't care for the place he originally had to refer me to either and brought it up an unrelated appointment to make sure I was happy. I wasn't.

At my last appointment, my doctor also said he is keeping me on the remicade while I'm pregnant. I didn't expect that. We are going to do another colonoscopy in 3 months to see if the treatments are healing, and then talk about the timeline of trying to get pregnant and when medications will be stopped.

Just needed to vent! Overwhelmed some days, especially the mornings when I take my handful of pills

[tacom]

I'm sorry.

my first remicade infusion is scheduled for tuesday, but I've had a fever for 5 of the past 6 days so I'm worried they won't let me do it.


I hope things start looking up for you.

[polarbearfans]

Hopefully we both get started without delay!

[OrangePixyStix]

Sorry to hear about all the hassle and sickness, I hope you get some relief soon!

I had terrible nightsweats when I was on the prednisone, so I am more than sure that is a big part of the problem. It really is the worst.

My doc said they wouldn't continue treatment on Remicade if I were to become pregnant, so that really surprises me that they plan to continue on for you! Luckily, I have no interest in breeding anyway so it's not a big concern for me. Hope you can start your treatments really soon and feel better!

[polarbearfans]

Yeah, I was surprised when he said I would continue with the remicade. I forget the exact timeline, but I would have to stop it a certain amount of weeks before delivery. I pushed a little on the safety, and he said it would be safe and best. I figure we can discuss it later since it will be at least 6 months before he suggests trying to conceive anyway. I will also be working with a different obgyn for high risk pregnancies also. I like my current doctor, but I want someone who is more experienced with the challenges someone with my condition may face while pregnant.

First step is to get myself healthy. Babies later...

[tacom]

I thought the general consensus is that if you're doing well on remicade (and your disease is severe) you should stay on remicade during pregnancy... they just try to space it so you only have to get a few infusions and push off your last one until after you've given birth? That's what my doctor explained to me. I know a poster here did really well on remicade during her pregnancy and now has a healthy baby boy. There are inherent risks to the medication, but a flare during pregnancy can be even more dangerous for mom and baby.


www.ncbi.nlm.nih.gov/pubmed/21621603

[polarbearfans]

Thanks for the info! Online I am finding mixed information on remicade and pregnancy. It is great hearing a real success story! I am going to definitely talk more with him on the topic. he seems very pro-remicade if it works. He did explain it is very dangerous to me and the baby if I have a flare during pregnancy and that we want to keep it in check.

Right now things are severe, the imuran and prednisone are helping a lot, but until now no medication has helped and the colitis became very severe. I didn't think I was going to survive this between the blood, pain, and weight loss. It didn't help that I had nobody to talk to about what was happening. My husband didn't really understand or even really believe me. He is totally on board now that he met my new doctor and heard from his mouth how bad things are progressed and saw the pictures from my latest colonoscopy. He felt really bad for how dismissive he had been.

i am so happy I was able to find a doctor that is interested in helping me and is specialized in my specific problem. My previous doctor was terrible. He would not consider any mediations other than various forms of mesalamine, which I could not tolerate at all (horrible side effects and increased symptoms), and he didn't believe me that the bleeding and pain were increasing. He said such a mild case did not need any other treatment (and that they were the most tolerated and the side effects couldn't be as bad as I was describing) and would not try steroids or immunosuppressants. I really wish I didn't waste almost a year of my life with him... :/

[tacom]

I'm sorry you've had a rough go, polarbearfans. I hope things start looking up for you!