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

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*Phoebe*
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Date Joined Sep 2005
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   Posted 5/22/2010 4:47 PM (GMT -7)   
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.

ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 5/22/2010 5:08 PM (GMT -7)   
I think it's time to talk to your doctor again, Phoebe. Maybe get yourself checked for lupus antibodies too, just in case?

In the meantime, dear Phoebe, I recommend resting as much as you can. Even if you feel fine, you still do have an illness and you are on some heavy meds. Sometimes it can help to nurture yourself a bit: spend more time in bed with a book; factor in a bit more sleep each night if you can; maybe have a little lie down in the middle of the day if at all possible. This can help with some types of fatigue.

I think you should definitely talk again to your doctor, though.

Ivy.

ps. Just so you know, I"ve heard people saying that there's a weird flu bug going round Aus this winter: no typical flu symptoms, but lots of feeling absolutely terrible for weeks and weeks until it passes. Maybe you have that?
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chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 5/22/2010 5:38 PM (GMT -7)   
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.

Grandpato2
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Date Joined Dec 2009
Total Posts : 681
   Posted 5/22/2010 7:31 PM (GMT -7)   
I've recently noticed the same symptoms that I found were due to too much sugar intake and I'm not diabetic. Think about it for yourself, do you feel bad the day after having more sugar than usual? It's a long shot but who knows?
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 5/22/2010 8:25 PM (GMT -7)   
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
cry
guess I'll see if it improves. work tomorrow. sigh.

FunGuy
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Date Joined Oct 2009
Total Posts : 1070
   Posted 5/22/2010 9:13 PM (GMT -7)   
Do you take Vitamin D?
 


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/22/2010 10:16 PM (GMT -7)   
No, I don't, but I do spent plenty of time in the hot Queensland sun in summer :)

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/23/2010 12:15 AM (GMT -7)   
This really sounds like a physician (in other words your swanky gastro) problem to me, Phoebe, not a gp problem. Physicians are the ones to deal with complex symptoms like yours.

It might help to write an A4 sized list of *all* the symptoms you're experiencing right now, and present it to him at your next appointment. Don't understate things: make sure he knows you're sleeping 12+ hours and feeling less enthusiastic about work than usual, etc etc etc, so he can get some idea of the impact these problems are having on you, and LISTEN and take you seriously.

It really can help if you write symptoms down in a systematic and orderly fashion: saves them time during consultations, and maybe helps them to see significance in minor symptoms that you wouldn't mention otherwise.

Phoebe, when you get a chance, might you be able to drop me a line please? Nothing major and nothing urgent; just a few bits of Aussie & uni-related info that I'd rather share offline than here on the forum.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/23/2010 12:25 AM (GMT -7)   
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.
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Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 5/24/2010 6:06 PM (GMT -7)   
Hi Ivy, I’m so sorry its taken me so long to get back to you …. I came in to work yesterday and felt horrible. spoke to the nurse who said it sounded like I have the flu – and asked if I had a flu shot – I said no, that I’d been meaning to ask he whether or not I should get one since I am on immunosuppressants (I had an idea they might be bad if the system is already weakened?) – but apparently not – they recommend everyone gets a shot.

I saw the pharmacist while I was picking up some panadol and he said yes, I have classic flu symptoms – he told me to take panadol (he said this is ok for crohnnies) – 2 in the morn, 2 at lunch and 2 at night – the panadol did make my head symptoms a bit better yesterday but I still feel bad today, I could barely swallow this morning so I think its getting worse around my throat….. Because I live alone I don’t know how I sound until I get to work (and as it turns out I sound terrible!) – So I think I will take tomorrow off to rest and give my body a chance to kick this thing. after all, my voice might be completely gone by tomorrow!

I would love to chat (once my voice returns, hehe) – if you email me your phone number I can give you a buzz at a convenient time. I will email you my email address so you can let me know your home phone number…..

Healthybychoice
New Member


Date Joined Dec 2009
Total Posts : 4
   Posted 5/24/2010 6:21 PM (GMT -7)   
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

ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 5/24/2010 6:42 PM (GMT -7)   
I'm glad to know you've spoken to your medical team, Phoebe, and received some expert advice. Your symptoms could have indicated anything from annoying to alarming, so I'm glad you have some answers. Flu is annoying enough, though.

I'm feeling pretty yuck here too. I don't know about you, Phoebe, but I'm over winter already.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 5/24/2010 7:01 PM (GMT -7)   
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!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/24/2010 7:12 PM (GMT -7)   
We had a couple of days that struggled to get above freezing here, and all my joints and muscles are screaming at me :-(. Like you, we don't have clothes or heating or houses designed for that sort of weather. Add Reynaud's and fibro and arthritisy issues to that, and you have a very unhappy Ivy.

I was in so much pain by Monday that I struggled to function at all, and now I feel very emotional and fluey and run-down and yuck. Don't know if I'm developing something, or going into a fibro flare, or just having a physical reaction to the weather. Either way, I don't appreciate it. It's only May, for pity's sake. What's July going to be like?

Are you having life issues there? Want to talk about it by email?

I.
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Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/24/2010 8:44 PM (GMT -7)   
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!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/24/2010 10:27 PM (GMT -7)   
Ack. Maybe this is a pandemic. Everyone I know has it / is getting it at the moment. And you know what? I think I am getting it too.

It isn't even 3.30, but you know what? I am Going To Bed. I'll bet you're looking forward to that day off tomorrow, so you can rest too.

Yes, I know about spencers, and am wearing one now. I'm looking forward to having a bit more energy so I can get to KMart or Target (where the spencers are nicer, I think) so I can get some more... and maybe even some of those leggings too.

Winter - curious that the Northern Hemisphere had an unusually cold one, and now we are too. I wonder what's going on...

Enough OT chatter, Phoebe: we can write more by email when you're able, ok?

Ivy, who is about to curl up in bed with hot drink and multiple books.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Grandpato2
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Date Joined Dec 2009
Total Posts : 681
   Posted 5/25/2010 12:15 AM (GMT -7)   
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.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

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