Does anyone on remicade seem to get ‘hit’ with anything and everything?

Hi guys,

This might seem like a very silly question (given that Remicade suppresses your immune system) - but has anyone else noticed that they seem to be feeling ‘under the weather’ more often after receiving remicade infusions?

Don’t get me wrong – my Crohn’s symptoms are fantastic and greatly under control since I started Remicade in October last year. However since my last infusion about 3 weeks ago, I have been feeling under the weather in strange sorts of ways. It started with headaches, or rather a ‘pressure’ feeling on my head, which lasted a couple of weeks. This week I was hit with an almost indescribable run-down feeling – headachy, really tired, sore throat, just generally ‘worn out’. Last night I had a shower and washed my hair and just having my hands above my head for that long made my arms hurt. I hadn’t felt like that since I was flaring very badly. I also had strange dizziness the night before last. I took the day off work because I wasn’t feeling well and suddenly during the evening I became very dizzy. When I shut my eyes I swayed slightly and if I moved my head too quickly my vision was blurry – I just didn’t feel like ‘myself’. I told my GI about the headaches when they were happening and he recommended I get my eyes checked – so I did and they are fine.

Given that winter is starting here in Australia it is probably just colds and viruses floating around and getting to me when they usually wouldn’t.....

I am just wondering if anyone else finds that they get sick with viruses etc quite regularly while on remicade..... I have gone from having a hyper-active immune system to a dampened-down one, and it just doesn’t feel like ‘me’ ..... I am used to getting sick, sleeping for a day, and feeling ‘right as rain’ the next morning.

I have been on remicade for 5 1/2 years and I am the healthiest one in my family. I have not even had a cold in a couple of years. I am a teacher in 3 different schools and I have school age kids at home so I am around germs 24/7! I was having issues with headaches and such a couple of years ago and my gi suggested that I take a zrytec every night. It has helped so much to keep things open and cleared. I also wash my hands constantly during the winter months and avoid those who are sick when possible.

Hi Grandpato2; I’m on a form of the specific carbohydrate diet, so I don’t have a high intake of sugar.... so that rules that out....

Ivy, I think you’re right, it’s time for me to see the doctor. Problem, is, I haven’t found a good quality GP yet. While I was at university and sick all of the time, I couldn’t afford a GP who charged for consultations, so I went to bulk-billing “what do you want ok sounds like a flu it’ll get better sign here, that all, get lost” doctors. And still, I haven’t had the time or energy to find a good GP. I have found a reasonable bulk-biller near my house, so I might make an appointment to see him after work one evening..... problem is most doctors don’t even know what remicade is since it was only approved in ’08. Still, its worth a shot – as you say, it could be that fly you speak of, someone else mentioned something similar to me....

I have been doing that, lots of early nights (friday night after spending the day at home sick I slept from 7:30pm-7:30am) and taking it easy - I've been home for three days and have barely left the house

guess I'll see if it improves. work tomorrow. sigh.

No, I don't, but I do spent plenty of time in the hot Queensland sun in summer :)

ps. Another thing that might work is to ask your swanky doctor to recommend a good (cheap) gp for you. That way, you'll know that your two doctors are mates and are likely to talk about you whenever they get together to play golf or watch footy or drink beer or whatever doctors do in their time off , because it's really, really, beneficial if your doctors are able to communicate well between themselves, and makes it even more likely that you'll get better care yourself.

Hi,

Unfortunately, drugs like Remecade and other immunosuppressants will make you more susceptible to viruses, as you have no immune system to fight them.

I was diagnosed in 1979 with Crohn's and in the early to mid-80s, I was on 6-Mercaptopurine for 4+ years. There was no Remecade in those days. I worked in a doctor's office and I was always sick. I changed doctors and my new doc immediately took me off the 6-MP and put me on Asacol. I still got sick frequently. I have now been in remission since 1998. I got off all my meds after starting Usana supplements. As of last year's colonoscopy, there was no sign of disease and no inflammation, just some scar tissue. Usana builds up your immune system so you can fight viruses. It also heals damaged cells. I am so thankful for being introduced to this product. I won't need another colonoscopy for 5 years. I'm healthy and I plan to stay that way.

There is another way to treat this horrible illness other than drugs and debilitating surgery. If I can help anyone, I would be happy to.

Dale

I am WELL and truly over winter, and over a lot of other things in my life at the moment too ….. I definitely have the winter-blues. I should be visiting my parents over the Queen’s birthday long weekend so that should give me a bit of cheer!!

Have you been hit with a virus/flu? I think I will need tomorrow in bed!

Yeah, stupid life issues….. grr….. I would love to talk to you about them via email … I’m at work at the moment but I will email you tonight.

This is terrible of me Ivy but I’ve forgotten where you’re located? I’m not looking forward to July either. One thing that I know helps me a lot through winter are thermals – they’re relatively inexpensive (if you get them on special from BigW) and you can get leggings or long-sleeved tops or short-sleeved ones. They make such a difference and you can wear them under anything!

You probably know about these things but just a thought! It has been unusually cold in Brisbane lately too – winter seemed to pop up overnight. We have a cloudy day today that’s keeping the warmth in a little more though so that’s good…..

Thanks for your email Ivy – I received it and will write back to you tonight

I hope you feel better soon …. Being sick over the weekend I spent three consecutive days cooped up in my flat, not seeing anyone or talking to anyone except my parents via phone, and it felt very isolating. My mind tends to go very inward and negative when I’m in a situation like that. So I’m back at work but of course it has its problems too when you’re sick!

As the flu shot is dead virus it won't affect you if your supressed. Only live viruses will be a problem. Here in Canada this winter we had a much higher incedence of flu's because the flu shot was the wrong type for the virus we got, so lots more who were usually protected by the shot had no protection at all. Apparently the virus this winter was a type of norwalk. (sp) Hpoe the fixed the shot before it got to you.