Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Remicade & possible side affects

Hi George, well, one month down the line and I'm starting to fear Remicade is crapping out on me. I've been in flare the last few weeks. I don't know if it's the Remicade dying down or if it's that there's been alot of stress going on. Work, fighting infections, work, the weather. There are so many factors that could be acting on my AS right now. I have my next infusion next week and an appointment with my rheumy the week after that to talk about it all.

All in all, feeling pretty bummed out by it all.

I'm glad to hear you're still able to work. Do what you need to do, OK?

Many hugs,

Kat,
Sorry your suffering. Infections, in my case seem to come hand in hand with Remicade.
10 months on after my last infusion, infection issue's now seem to be clearing up (prostate), after 2nd dose of antibiotics. Still have another 4 weeks on antibiotics, before I can consider going back on Anti TNF. Pain levels, relatively high (expectedly).
Also just had my alt's checked, also slightly raised May be due to antibiotics. Hope so. Will I ever be back on Anti TNF? Either way, I'd rather know. Never that easy to get definitive answers. That's AS I suppose.
On the more positive note, 8 weeks on, still holding job down. Long may that last.
Best wishes.
George.

Six weeks later...

My next infusion is in two weeks, well, actually, it was two weeks last Tuesday. Not sure how many days that is. Can't count. Our office is a construction zone and it is super noisy. Blech.

Regardless, I cannot wait. My left shoulder/shoulder blade feels like it's going to use my neck as a runway and launch itself through my brain. Took 400mg Celebrex at 9:30 this morning. Three hours later, not much relief. May relent and take some Tylenol as well.

So, when I was in for my last infusion, we had a revelation. Remicade doses are based on weight. I've gained 15-20lbs since I started on it. The rheumy and I had a huge moment. My next infusion will be a higher dose. Hopefully, it will last the full amount of time again. argh.

Infections are gone, thankfully. Now, where's the nearest rock so I can crawl under it.

I am sorry to hear the infections seem to be unending. How are you doing now?
Better I hope.

I'm glad to hear you've been able to continue working!! That is good news! Is it still good news?

Many hugs,

You know, George, I heard a horrible rumour about Remicade ... apparently, weight gain is not uncommon.

In my case, it wasn't such a bad thing. 20lbs brought me to the high end of my ideal weight. Still, it's a pain because I keep having to buy new clothes! I've put myself on a bit of a diet ... portion sizes, keeping the deep fried stuff away, smaller bowls of ice cream (which is truly a trial), I may have to give up my evening glass of cider next (which won't be that difficult), lots of salad with balsamic or red wine vinaigrette, grilled everything. You know that kind of thing. And I'm trying to get my exercise programme back into full gear, which is hard when you hurt all over and you're not supposed to exercise the really painful bits.

I'm so glad you're feeling good these days. Hopefully, the resumption of Remicade will only have positive results for you. I'm keeping my fingers crossed on your behalf.

Say, a stone is about 20lbs, isn't it? Hmmmm. That gives the rumour and its association with my own weight-gain some credence, don't you think?

Warm hugs,

Kat,
Thanks for your kind words, I hope that the Remicade works for me again & without side affects.
A stone is 14 lbs, I'm old school you see. Just as I was leaving school imperial was changed to metric here in the UK (mid 80's). I'm OK with temperature though working on either Celsius or faranhight.
I've also gained weight since the Remicade (around 20lbs), over 5 years. May be due to the fact I've been enjoying my food too much whilst not in too much pain.
I had a word with the head Anti TNF nurse regarding Remicade & weight gain & he said it was quite common, but not all patients put on weight.
George.

Kat,
Another update, just had a Remicade infusion yersterday. Pain & side affect free days ahead, I hope
Best wishes.
George.

Hey, we were being biologically modified at the same time!

I hope you get all the benefits without the negatives. My dose went up yesterday and I cannot believe how much better I feel today than I have in almost a year. I was pretty knackered yesterday, tho.

I know about the switch from imperial to metric. Here in Canada, it changed in the mid/late 70s, when I was 13 or so and already had 7 years of schooling in imperial. I'm good with celsius now (farenheit is better), cm and mm are OK when typing or measuring small things, but metres suck. I have no concept of how big a metre is, but a yard is no problem. Inches, feet and yards are definitely better. We didn't use stones in Canada, it was pounds ... kilos bite the big one and stones are. Litres of petrol is one thing (it's all rather vague), but cups of liquid when cooking instead of ml is definitely the way to go (although, I have managed to figure out that 250ml is one cup).

Honestly, you'd think they would take into account the mental trauma of trying to make a switch like this after years of one system.

Many hugs,

Hi Kat, I think of a meter as being a yard plus 3 or 6 inches-so just a bit longer than a yard. Does that help? I'm not exact here, but this is how my metrically challenged brain converts it.

Here's to pain free days ahead, you two!