Swine flu, Remicade, CD, what is the strategy?

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Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 10/13/2009 7:36 AM (GMT -7)   
Swine flu vaccine has started arrived in our state and I think kids and others get preference. Now, I was wondering what is the strategy for those of us on immuno suppressants (pred, meth, remi, humira, etc) and regarding tackling swine flu. I am concerned because swine flu seems to knock out the most healthy people, I guess we have to be doubly concerned. Should we get vaccinated or not, I am not sure what the best method is. Can the CD forumites share the experiences, ideas, and suggestions.

Thanks

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/13/2009 8:09 AM (GMT -7)   
Avoid the flu mist shot (both for seasonal and swine flu). It has a weak live virus, and the immunosuppressed can get the flu from it. I think most states have only so far received the flu mist version of the swine flu shot. In the next week to 3 weeks, the regular injectable shot should be available. This is the shot to get.

My husband who has CD, and is on remicade, will be getting the regular flu shot today, and the injectable swine flu shot when it become available. You cannot get the flu from the injectable swine flu shot. That's our strategy. Also, just because you get a shot, doesn't mean you're completely protected, so caution is always the order of the day. Wash hands, keep from putting hands in mouth nose or eyes without washing first, etc. This is because the vaccines work by triggering your body to produce antibodies - when you are immunosuppressed, the immune system may or may not produce these antibodies. Hopefully it will produce enough antibodies for the vaccine t be effective.

Also, if you or a family member gets the flu, see your doctor immediately to get Tamiflu.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/13/2009 8:41 AM (GMT -7)   
Oh, also, I read today that it is a good idea for people with immunosuppression to go ahead and get the pneumonia vaccine. The rationale is this: the swine flu vaccine is unavailable as yet. If you contract the swine flu before the vaccine is available, one of the things to worry about is secondary infections. A lot of people don't die from the swine flu itself, they have problems with secondary infections such as pneumonia and bronchitis, which further complicates things. So, if you get the pneumonia vaccine, that's one less thing to worry about if you get the swine flu. Also, unless you have a latex allergy, the pneumonia vaccine should not have any serious side effects, and you can't get pneumonia from it.

So, this week season flu vaccine, next week pneumonia vaccine, and whenever the swine flu shot is available, he'll get that. Also, it appears that biologics don't suppress the immune system to the extent that you don't derive benefit from vaccines such as the swine flu vaccine. Even on biologics, based on this study, you develop the same antibodies as people who are not taking biologics:
www.medicalnewstoday.com/articles/56507.php

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 10/13/2009 9:13 AM (GMT -7)   
Oy. Just my opinion of course ...  Our doc did not recommend the shot to us, in fact said he thought he himself would not be getting the vaccine.
 
 

Post Edited By Moderator (MMMNAVY) : 10/15/2009 1:52:02 PM (GMT-6)


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 10/13/2009 10:11 AM (GMT -7)   
But any rate thanks for the advice, I am scheduled to start this friday on Remi

Post Edited By Moderator (MMMNAVY) : 10/15/2009 1:55:32 PM (GMT-6)


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/13/2009 10:48 AM (GMT -7)   
11

Post Edited By Moderator (MMMNAVY) : 10/15/2009 2:02:51 PM (GMT-6)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/13/2009 11:54 AM (GMT -7)   
4. Use good judgement. NEVER rely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 10/13/2009 12:32 PM (GMT -7)   
Just heard it from CDC doctors in NPR, take injections and not the mist is the advice (thanks PV for you advice).

pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 10/13/2009 6:29 PM (GMT -7)   
My GP told me H1N1 shots go out as follows:
1-Pregnant people
2-People who work with or live with babies under 6 months old
3-Children and young adults up to the age of 24
4-Health care professionals
5-People with cronic health conditions
6-People 25 to 65
7-People over 65.....
As of right now, until mid November, regular flu shots are unavailable.(In Upstate N.Y.)
We're all #5's here so we'll have to see how supplies go.
B-12injections,Pentasa,Loperamide,Entocort,6mp,Hydrochlorothiazide,8 week
Remicade,vitamin-D,Terbinafine,
Remission since surgery
and 8-week Remicade.


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 10/13/2009 7:24 PM (GMT -7)   
Everything I was going to say has already been said. Avoid the mist, get the shot. I got the seasonal flu shot several weeks ago and will get H1N1 when it's available.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Amor fati - Nietzsche


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 10/14/2009 4:48 AM (GMT -7)   
The swine flu vaccine is available for free accross australia .... I saw a GP tonight (just a random one, not a regular) to get a repeat prescription and he said I should be getting the swine flu vaccine because immuno-compromised people are high-priority.
 
I said I would think about it.
 
I would like to ask my gastro first, and take his advice.
 
Is it still not available in the US? That seems strange to me!

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 10/14/2009 5:44 AM (GMT -7)   
*Phoebe* said...
Is it still not available in the US? That seems strange to me!


Seems strange to me, too. Very strange.

Post Edited By Moderator (MMMNAVY) : 10/15/2009 2:05:00 PM (GMT-6)


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/14/2009 7:37 AM (GMT -7)   
The Flu mist type is what is available for the swine flu in the US right now. I believe (hopefully) we'll start seeing the injectable (non-live virus) type the week of Oct 19 (next week) . . . at least this is what the local shot nurse location told us. Also, they definitely provide the shot to people with underlying chronic health conditions, including crohn's and immunosuppression.

I wouldn't mind getting the vaccine as well . . . but there's nothing wrong with me, so I am only a candidate for the flu mist variety until the shots become widely available to all. From what I read, it's best not to not take the flu mist, if you have someone living with you who is immunosuppressed . . . so I guess I have to ask the doc/nurse what is right for me. I am really not so worried about me . . . I just don't want to do anything that'll hurt my husband. I've had the flu before and recovered . . . it's not pleasant, but it probably won't kill me either. But I am worried that if I do nothing, I'll bring home the swine flu, and the flu mist doesn't sound like the right option either. I guess I'll ask the doc, and see what they tell me . . . maybe they'll just give me the injection as well?

What is your family doing for the swine flu? I'd imagine there are more people in a situation similar to mine . . . trying to figure out whether to get the flu mist (they recommend not taking care of immunocompromised people for a week after getting the flu mist), or take a chance and bring home the swine flu proper.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Marlowe
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 10/14/2009 10:51 AM (GMT -7)   
Hi-

Dr. Rubin from the IBD Center at the University of Chicago has an opinion about H1N1
 
http://messageboards.ivillage.com/iv-bhgendigesti

Post Edited By Moderator (MMMNAVY) : 10/15/2009 2:15:38 PM (GMT-6)


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/14/2009 1:15 PM (GMT -7)   
One of my husband's coworkers has been diagnosed with H1N1! He's recovering, but it is a scary place out there right now, especially for people who have underlying health conditions. The H1N1 virus seems very prevalent in my husband's work place right now. Thankfully my husband has a job where he can work from home pretty much - so he's just going to work from home until he can get vaccinated and build antibodies to it.

In the meantime, I don't want to bring H1N1 home to my husband. So, I just went and got my flumist H1N1 vaccination. I read on the CDC website that it should be safe for house hold members to take (they recommend not taking it only if you're going to be around seriously immunocompromised people like who just underwent stem cell transplant and are in the clean ward of a hospital, and actually recommend taking it if you are going to be around high risk groups like people taking steroids, etc.)

So for now, I prepared the guest room, and I'll be sleeping in it for a while to minimize the risk of passing on the weak H1N1 vaccine virus. So, if you have family members who are on the fence about the flumist H1N1 virus, I recommend them getting it so they can protect you from it. Here's the link to the CDC FluMist page:
www.cdc.gov/FLU/about/qa/nasalspray.htm

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/14/2009 2:26 PM (GMT -7)   

No ot, no flame

...Given that one of our posters here recently had a member of their family pass away from H1N1...

Post Edited By Moderator (MMMNAVY) : 10/15/2009 1:45:52 PM (GMT-6)


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 10/14/2009 2:58 PM (GMT -7)   
I get remi tomorrow and then the flu shot on Friday and then the swine flue shot next week.

I talked to my doc yesterday and he said that it is a must to get the flue shot and swine flue shot for CD remicade people
24 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
Crohn's disease in December 2008 Then they changed it to UC in June 2009.
and Autoimmune Hepeatitis in July 2009


Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 10/14/2009 5:51 PM (GMT -7)   
We got our regular flu shot last week. Same thing here with the swine flu shot, won't be available until some time next month. Which doesn't make me thrilled since it's been going around so badly here for months. Even then I'm not sure if we'll be able to get it, due to supplies and being #5 on that list. They are even running out of seasonal flu shots here! We felt lucky to get that one!

So I guess lots of hand washing, and trying to stay out of public crowds when I can. What was bad was even when we got the flu shot one of the nurses was sniffling and sneezing. Just lovely!


~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.

Post Edited (Jen77) : 10/14/2009 6:54:36 PM (GMT-6)


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/14/2009 6:14 PM (GMT -7)   
Yeah, it is kinda scary how prevalent H1N1 is right now. That's why I decided to go ahead and get the flu mist (my husband is the one with Crohn's disease and on Remicade). He's going to work from home until he gets the shot. But given how prevalent it is in the workplace right now, I decided to go ahead and get the flumist shot for myself (I'm healthy), since I can't work from home all the time, and also because the CDC says that I can get one even though I live in the same house hold as an immunosuppressed person. They only tell people who are going to be around clean room patients to not take the flumist.

Perhaps one of the things that you can do to protect yourself, and to minimize your vectors of infection is to get the people in your house who are healthy to go get the flumist vaccine. Just be sure to take necessary precautions for a week after getting the flumist to ensure that there is no transmission of the modified vaccine virus (the CDC says that chance of transmission of the modified vaccine virus is 0.6 - 2.4%.

That's the choice that I have made after talking to his doctors, and reading for myself online. What are your family members going to do? It's been about 7 hours since I got my flumist vaccine, and I have a slightly sore throat, but other than that I am ok. We're just going to for a week avoid close contact for a week - I have my spare bedroom all set up for me (we shouldn't need to do this, but I am being extra paranoid).

Be safe people - they don't expect the injectable virus for use until the end of the month, if then. Lots of handwashing, and work from home if at all possible. I recommend family members getting the flu mist vaccine if it's available - but of course that's your choice. Also, for those of you avoiding the flu shot because of thermasil - I understand that people with Crohn's should not get the flumist, but if you are a caregiver for someone with Crohn's, you can get the flumist which doesn't have thermasil.

PV

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 10/14/2009 6:25 PM (GMT -7)   
Well I'm pregnant, care for a baby and have CD. Still not able to get the shot here yet. Apparently only the spray is out in my area so far.

MrsK
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 10/15/2009 12:08 PM (GMT -7)   
PV, I am in your situation (husband has Crohn's and is on Humira, I am healthy), and I am planning to do what you did. I don't currently have a doctor, though, and I don't reckon pharmacies like CVS are going to be dispensing the vaccine. Did you just go to your PCP?

My husband also got the pneumo vax this week for the reasons you cited. A full third of the 77 fatal H1N1 cases the CDC recently evaluated had bacterial co-infections, and 10 by S. pneumococcus (pneumonia).(here's the report.) As you said, one less thing to worry about should he pick up the flu. I wish my husband could work from home, but at least his office is pretty small.

I'm glad to find other people (especially immunocompromised people) taking this whole thing seriously. If someone doesn't have a healthy respect for a highly contagious virus that kills healthy young adults before their families know what is happening, I don't know what to say to them.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/15/2009 1:13 PM (GMT -7)   
Remember let us speak to our experiances here on topic about remi and the flu, and let us be very careful about how we phrase things and also be careful about how one speaks from a sources that has questionable validity.
 
4. Use good judgement. NEVER rely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 10/15/2009 2:22:17 PM (GMT-6)


yankeespg23
Regular Member


Date Joined Dec 2007
Total Posts : 63
   Posted 10/15/2009 6:50 PM (GMT -7)   
I took the regular flu shot on Oct 1st at my G.I office.
I'm going to get the swine flu shot as soon as it becomes available here.
Not taking any chances.
34 yr old Male from NYC, DX with Crohn's in oct of 1987
Resection in 1990
Switching to Remicade, Aug 6th. 2009
Entocort 3mg 3 pills each morning.
Currently on Humira pen shots, 40mg weekly. Cipro 2x a day.
Anemic again, Start Iron infusions August 31.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/20/2009 1:04 PM (GMT -7)   
The swine flu has been really making the rounds at my husband's job. 2 coworkers have gotten it so far. So for now he's working from home, but he's getting stir crazy just being home. Of course the injectable vaccine isn't available yet for him, so it's just more waiting.

To get him out of the house, with some peace of mind, his GP went ahead and called in a script to the pharmacy for Tamiflu to have on hand, should he start feeling bad. So, I think he's going to start going back into work and depend on Tamiflu to get him through the flu should he catch it.

We decided that before he started TamiFlu, should he get sick, we will try to get the infuenza A/B test even if it is a weekend because most immediate med places can test for it, and we don't have to go to the ER for that.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 10/20/2009 3:11 PM (GMT -7)   
I had the regular flu shot about a month ago. I'm too old (70) for the H1N1 profile but am on Pred (2 1/2mg), Imuran (200mg) and Humira (40mg E-O-Wk). My son-in-law had H1N1 and so did a grandson in this same town but different house. I stayed away. Now we are scheduled to fly home on 10/28 and there is no vaccine available so all I can do is wear a mask during that flight and hope for the best. Reservations were made 8 months ago. Home is in Florida and we are in Nebraska, 1,600 miles away. My wife has sugested we drive.
Bummer.
Dave D.
Grandpa Dave is 70.
IBD since 1977
Perforation and resection 1993
Diagnosed as Ulcerative Colitis 1994
Received J-Pouch 1997
Diagnosed as Chron's 2004
Redo, resection, and remove camera capsule 2005
Unsucessfully tried LDN 2007
Contracted Scleritis of the Eye 2008
Four Grandkids
Older than dirt

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