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Crohn's Disease Forum » Parents of Kids with IBD » New concern!! Remicade and no mumps immunity


 
06-07-2013, 12:47 PM   #1
Tesscorm
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New concern!! Remicade and no mumps immunity

Stephen's going to Dominican in July... after a whole runaround with doctors to just get some info, I asked one doctor to run immunity testing for hepatitis (dr ran some other immunity testing too). Stephen's fine on the hepatitis but he's not immune for mumps!

How can this be??? He had his two MMR vaccines as a child (his measles immunity is fine).

So, now what? Mumps is a live vaccine.

How serious is mumps? I've never even really read much about it as I assumed my kids were immunized for life! Now I'm reading and it's scaring me that Stephen is not immune!

The doctor who told me this is washing his hands of it... last time we saw him, he got pissed at me because I questioned his 'speciality', now he's suddenly only a 'travel' doctor and barely wanted to answer my questions - said I should speak to GP and, with the remicade involvement, didn't want to say anything.

Before Stephen started remicade, I specifically asked the GP about vaccines, he said Stephen was up-to-date and only tested for TB. (This is what I meant in another post about worrying that one day I wouldn't ask the right questions/do the right thing - I should've had immunity checked for EVERYTHING! - But, OMG, shouldn't the GP know that, know the implications/complications of being on remicade! )

I'm so pissed and worried now! Does this even impact Dominican??? I don't know how worried I should be??

Anyone have any thoughts?
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06-07-2013, 01:00 PM   #2
Clash
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I don't have any advice but I have been wondering about MMR as well, in the US you can get vaccines at the local health dept and that is different than the private GP you see although the GP should have all the med records of the child. I have been thinking lately, even though the GP said C was up to date on his vaccines, that I need to check C's MMR and one other though now which one eludes me.

I hope someone can answer your questions...doesn't seem like it is always something, and it is on you to stay on top of every little thing, which is crazy because of all the medical people in your kid's life you are the least medically educated(well at least until you join the forum HA!)

Sending Hugs!
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06-07-2013, 01:12 PM   #3
PsychoJane
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It is a bit of a puzzle when it comes to immunization and biologics/immunosuppresor. Personally I fear vaccination like the pest from past experience but I've never encounter someone who did get reaction like I did so I'm probably not a reference on that aspect. I don't know if there is a safe way to process with immunization with people that are taking biologics or if it is better to avoid it and rely on the fact most of the population is supposed to be immunized.

The only thing I will dare to bring is regarding the mumps and Dominica. I know we are never too cautious but I quickly looked at the WHO statistics regarding mumps and the reported cases seems fairly low in the Caribbeans. I know that the validity of these statistics are not the best considering they are "reported" cases and well if they don't report them or evaluate the cases this won't help but it seems to be generalized for the area. 3 cases by island seems to be for the worst. I don't believe it poses a greater risk over there than here in Canada.
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06-07-2013, 02:48 PM   #4
xmdmom
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No mumps reported in the D.R. according to the World Health Organization http://apps.who.int/immunization_mon...cidences?c=DOM


You might be interested in this page from the cdc
http://www.cdc.gov/vaccines/vpd-vac/...t-vacc.htm#mmr

Unfortunately it often uses wishy washy words "might" or "check with your doctor"
06-07-2013, 02:48 PM   #5
xX_LittleMissValentine_Xx
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Do the vaccines wear off? or maybe there is a sequence of vaccines and he missed one? I remember when I recently had the cervical cancer one it was a sequence of three I think. I don't know about MMR though.
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06-07-2013, 03:05 PM   #6
xmdmom
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Just want to add this from drug info
http://www.drugs.com/remicade.html

"What should I avoid while using Remicade?

Do not receive a "live" vaccine while using Remicade. The vaccine may not work as well during this time, and may not fully protect you from disease. Live vaccines include measles, mumps, rubella (MMR), Bacillus Calmette-Guérin (BCG), oral polio, rotavirus, smallpox, typhoid, yellow fever, varicella (chickenpox), H1N1 influenza, and nasal flu vaccine.

Make sure your child is current on all vaccines before he or she starts treatment with Remicade."

The prescribing info http://www.remicade.com/shared/produ...tion-guide.pdf says:

"Adults and children should not receive a live vaccine while taking REMICADE. Children should have all of their vaccines brought up to date before starting treatment with REMICADE."

You asked about the seriousness of mumps:
usually not very but can have complications sometimes; not sure how remicade would affect its severity. Here's what the cdc says http://www.cdc.gov/mumps/about/downl...-factsheet.pdf
06-07-2013, 03:34 PM   #7
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There are some vaccines that are live by default, but have an inactivated version that is attainable. I did that with my Typhoid vaccination when I went to China. I got an inactivated version. While on remicade, ALWAYS ask if the vaccine they are about to give you is live or inactivated. They almost gave me the live typhoid vaccine
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06-07-2013, 03:54 PM   #8
xmdmom
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Yes for some vaccines, there is an inactivated version. This is the case with polio. As far as I know and can ascertain, there is not one for mumps. The only one is the live combined MMR.
06-07-2013, 04:04 PM   #9
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Standard is two MMR when they are children about 2 years apart and only an adult booster if they fall into a high risk category and I don't believe Crohn's is a high risk category. So probably nobody thought of testing since he had the 2 doses for MMR
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06-07-2013, 04:51 PM   #10
Tesscorm
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Jmrogers4 - yes, that's what happened... GP looked at his vaccination record and saw that he was up-to-date so it wasn't checked. From what I've read, 80+ to 90% of people obtain lifelong immunity from the two MMR vaccines - Stephen happens to be one of the few that didn't.

xmdmom - thanks, will have a look at the links! From what I've read, there once was an inactive mumps vaccine but it's no longer available as it only provided temporary immunity and the live vaccine provides lifelong immunity. I am going to ask if the vaccine is available under certain conditions (???) as temporary would be better than none, but I'm thinking it's very likely that it's no longer manufactured at all.

Testing immunity levels is so simple, ie blood test, you'd think it would be standard to test for these things before commencing on these types of meds. Especially, as I've now learned, these vaccines do not provide lifelong immunity 100% of the time.
06-07-2013, 09:58 PM   #11
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Unfortunately not everyone will seroconvert following vaccination and that plays into the herd theory. If 100% of people are vaccinated then the 10% that fail to seroconvert will be protected by the herd.

Have a look at this Tess:


Results of serum antibody tests in vaccinated persons are difficult to interpret. In vaccinated persons, antibody levels are often lower than following natural infection, and commercially available tests may not detect such low levels of antibody. As a result, post-vaccination serologic testing to verify an immune response to MMR or its component vaccines is not recommended. There are no data on the effect of additional (greater than two) doses of mumps vaccine on antibody levels or protection from disease.


http://www.cdc.gov/mumps/prev-contro...-immunity.html
Could be possible that Stephen does have some antibody activity there???

Speaking of vaccination and failure to seroconvert...me!

When I first started nursing, many moons ago, the hospital I trained at had an infectious diseases unit. As a result of this we had to get tested for our immunity to a number of diseases and depending on the results vaccinated. So one of the diseases was TB. We all lined up and had our mantoux test of which predictably just about everyone came became negative. Then we all lined up, minus one or two people and had our BCG vaccination.
A BCG produces a similar sort of response to smallpox, in that you get a sore and then you are left with a scar. The powers to be would measure the sore in the following few days and you would then be given the stamp of approval.

As it happened I didn't get any response to the injection at all. So they repeated the mantoux, no response, so another BCG. Again no response, so another mantoux, no response, so another BCG. After the third one I had the tiniest sore, that didn't meet up with the minimum required length I might add, and the powers that be huffed and puffed and said you must be immune by now and threw me in the infectious diseases unit! Oh to be 18 again and not have a clue because you are invincible!

Dusty. xxx
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06-07-2013, 10:07 PM   #12
crohnsinct
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Yeah...did you see the risks for a teenage male or adult male if they do get mumps?

Dominican or canada doesn't much matter. If he isn't immune he isn't immune.

The non activated vaccine is no longer available. Nor is the mumps vaccine pulled away from the other two. It is all three or nothing.

I don't know why we are still discussing this. I though we decided months ago that our kids were to more into their sterile tents and be wrapped in bubble wrap with infectios disease and the cdc on speed dial!
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06-07-2013, 10:15 PM   #13
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haha...sterile tents!

Wait...what is that website again? Anyone seen the flea commercial with dog living in the plastic tubing? Yeah...does that come in dorm size for college?
06-07-2013, 11:51 PM   #14
Tesscorm
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Dusty - thanks! Both for the link and the laugh!! If he had NO immunity at all, wud his test result actually show '0'? Don't have it in hand but there was 'a level' but it was low ant there was a comment along the lines of 'no indication of exposure or vaccination'...

Crohnsinct - yeah, dominican or Canada is the same. And, oh yes, have become fully aware of all worst possible cases!

Sterile tents - can we order in bulk?
06-08-2013, 01:09 AM   #15
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I don't really know Tess but I would have thought that no immunity to the mumps virus would be a 0. It makes you wonder if a low level plays into the comment cdc comment.

Dusty. xxx
06-08-2013, 08:35 AM   #16
Tesscorm
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That's what I was wondering too???
06-08-2013, 10:05 AM   #17
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I could use a sterile tent when I travel on planes. I don't get sick much but when I do it's usually a lingering thing. The latest bout is leading to me getting my tonsils chopped out.
06-13-2013, 08:45 PM   #18
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Appointment with ID specialist did not go well - she was great, I'm just not happy with what she told me.

So, given the seriousness of mumps (most at risk - adult males; worst time to catch mumps - while at college/university ), she recommends Stephen have the mumps vaccine (apparently, you can have a 'mumps' only vaccine??). Asked her about him having the live vaccine while on remicade - she said there aren't a large number of serious reactions when immunosuppressed people get vaccines but, yes, there is certainly some question/risk. She wholeheartedly agreed that we should discuss with GI as he has more experience with remicade than she does.

Also explained that people with compromised immune systems sometimes do not develop antibodies to vaccines the way the average person would. To build acceptable immunity, you sometimes must receive additional doses of vaccinations to reach acceptable levels! She also mentioned people like Dusty! Some people seem to have immunity but do not reflect this immunity in tests - at a certain point, immunity is presumed to be there. (However, not what she's suggesting in Stephen's case. )

When S had two doses of cipro, pre-dx, he reacted with hives - antihistamine took care of it. She is strongly recommending he retest his reaction. She believes cipro is an important drug to have available for future treatment, especially with Crohns. She said while it may be unlikely, it is possible that he was reacting to something else. Also, while on remicade, remicade itself may subdue his reaction to cipro. I asked her what the risk was of a stronger reaction (ie anaphylactic), she said possible that the hives may be a bit worse but more serious than that is unlikely but not impossible.

So now what do I do??? Of course, I will be contacting his GI but wanted to get feedback here too!

I was already worried about his compromised immune system on remicade, now I'm double/triple worried!

Has anyone had a live vaccine while on a biologic? What was your experience? PsychoJane - do I dare ask what your experience was? What vaccine was it and were you on a biologic?

What about the cipro? I'm worried about a reaction to that as well! Any thoughts on that?


Just a FYI for kids of approx the same age as Stephen (and this might apply only to Ontario or Canada??) - ID doctor said they are now aware that the formulation of the MMR that was available over a number of years, including those from when S had the vaccines (1995 and 2000) did not provide as strong an immunity to mumps as previously thought. Great... wish that info had been given to me before!

Any thoughts???
06-13-2013, 08:53 PM   #19
crohnsinct
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Any thoughts???
KEEP HIM IN HIS BUBBLE!

Gee IDK. In our experience no doc would give a Remicade patient a live vaccine. Too risky that they would actually catch the disease. Why would you knowingly inject the live disease into your child's Remicade body (their words not mine). I think I would skip it for now. He hasn't gotten mumps this far so what are the chances he will get it....I know I know...that statement just about invited Murphy not just for a visit but to come live with you!

But did she happen to say if travelling to DR increases liklihood of coming in contact with mumps?
06-13-2013, 09:09 PM   #20
purdueCrohns
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1) I would consult another doctor to make sure. I have always been told to NEVER get live vaccines. It may not hurt to ask to talk to a pharmacist. They may have a unique perspective since they can give vaccines and prescribe humira/remicade.

2) If you are going to do it on remicade, I would be very strategic with the timing. If you are on an 8-week interval, you definitely want it after week 4. Weeks 1-4 have the strongest immunomodulating effects
06-13-2013, 09:13 PM   #21
my little penguin
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Ok few thoughts
Well you asked .....,,
As far as cipro and reaction
We gave DS a drug challenge in an allergists office
To disprove ibuprofen allergy( too funny since he can't use it anyways now)
But he did pass.
We also pre medicated with pred prior to iv contrast since that is a one shot deal
To avoid reactions for ct/mre scans .

Trying the cipro challenge might be worth discussing with and allergist
And doing it in a hospital/clinic setting where they had equipment to deal with anaphylaxis .

As far as mumps
I would discuss with Gi obviously but I agree with CIC risk vs benefit conversation needs to happen first .
But when they ( Gi/ped) thought DS may have been exposed to possible chicken pox since he had been exposed to shingles -no one even hinted at a chicken pox vaccine.
An immune booster type thing ( gamma goblin ?) to help him fight but not a live virus at all.
He was only on 6-mp at the time not even remicade.
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06-13-2013, 09:17 PM   #22
crohnsinct
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Ok few thoughts
Trying the cipro challenge might be worth discussing with and allergist
And doing it in a hospital/clinic setting where they had equipment to deal with anaphylaxis .
Oh yeah totally! No way would I do a trial with a possible reaction at home by myself. Will the bubble fit in the car?
06-14-2013, 01:55 AM   #23
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I'm just not sure where the ID doc is drawing the info from re: live vaccines and immunosuppressants, I guess it is just a general statement she is giving but even so...I have never read anywhere that it is an acceptable risk or recommended for the reasons of 1. the potential to contract the disease and 2. the potential that the immunisation will be less effective.

Patients who are taking immunosuppressives (tacrolimus, cyclosporine, etc) or high doses of corticosteroids, defined as prednisone 20 mg or more or 2 mg/kg daily for at least 14 days, should not receive live vaccines or they should be withheld for at least one month after discontinuation of the corticosteroid.3,5 Patients who are receiving inhaled or topical corticosteroids, or alternate-day corticosteroid therapy can receive live vaccine products.1,2

The safety of live vaccines in patients who are receiving recombinant human immune monoclonal antibodies (i.e., infliximab [Remicade], etanercept [Enbrel], others) is not known. However, since reactivation of latent tuberculosis has occurred in patients receiving these agents, live vaccines should be administered prior to starting the monoclonal antibody or at least one month following its discontinuation.1

http://pharmacytechniciansletter.the...ookieSupport=1

VACCINATIONS
Live vaccines should not be given with REMICADE®. Bring pediatric patients up to date with all vaccinations prior to initiating REMICADE®. Exercise caution in the administration of live vaccines to infants born to female patients treated with REMICADE® during pregnancy.

http://www.remicade.com/hcp/
Very, very much a risk v's benefits discussion with the GI.

And yes to doing any allergy challenge in a controlled setting!

Thinking of you Tess,
Dusty. xxx
06-14-2013, 07:06 AM   #24
xmdmom
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A very challenging situation. I really empathize with you Tess!
06-14-2013, 07:27 AM   #25
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Have you seen this document

http://www.phac-aspc.gc.ca/publicat/...p-orei-eng.php
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06-14-2013, 08:18 AM   #26
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Thanks everyone!! I was finally settled in and as comfy with remicade as I'll ever be and now have to figure this out!!! Ugghh...

Sent email to GI last night, their office is closed Fridays so won't hear anything until Monday at the earliest.

This ID specialist has been caring for my dad for the past few months and, from all my mother's heard from other docs, nurses, etc., she is an incredible doctor, is the head of the ID dept at the hospital and was absolutely great when we met with her re Dominican trip but, I've got to admit, I wasn't comfortable with all her advice yesterday. At least, not with the vaccine nor the cipro trial (although she did defer the final decision re the vaccine to the GI given his experience).

Crohnsinct - I've thought as you... if he hasn't developed immunity for 19 years, he obviously hasn't been exposed! For now, I hope this continues until we can figure out something (although, not sure what that 'something' will be). And, this does not affect Dominican... whether here or there, he may be exposed to mumps. Her only comment re Dominican (and here as well) is to be extra cautious (not sure how you manage that???) when around people from countries that may not have as high a vaccination rate as we do. Unfortunately, university will be a challenge as there is so much social interation with many, many people.

I also asked GI if we can arrange for drug testing - I really just wasn't comfortable doing this at home.

Sometimes it just seems no matter how proactive/preventative you try to be, there's always 'one more thing' you didn't count on!!!
06-14-2013, 04:09 PM   #27
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Just sittin' here in my bubble Tess...

'Cause I would have no idea if my kids have seroconverted to any of their vaccinations. Sure they had them all but have never had any reasons to have titres done so the assumption is they are immune. Matt had the quantiferon gold (TB) done when they thought he may require Humira but that is it.

Dusty...sittin' in her happy dreamworld and thinking of you Tess.
06-14-2013, 04:47 PM   #28
crohnsinct
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I also asked GI if we can arrange for drug testing - I really just wasn't comfortable doing this at home.
Come on people! Tell me I am not the only one who had to read this twice to realize what she was talking about! Yes! My city head went THERE!
06-14-2013, 04:52 PM   #29
my little penguin
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Not just you...hehehe - here as well
Tess you want the "drug challenge" done at an allergist clinic.
I wouldn't do it anywhere near a Gi office .
06-14-2013, 09:48 PM   #30
Tesscorm
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OMG, you guys gave me a good laugh!!! I'd better check my 'sent' emails to the GI... pretty sure that's how I worded it there as well... can only wonder what the GI's thinking?!?! Ah well... I wonder how many times he thought he was getting this nice stable new patient that would be a breeze to treat... THEN came his mother!

Dusty!! So sorry... As it seems there's nothing to be done so (at least not that I've been able to find), personally, I would've been happier in my bubble!

I did do quite a bit of reading into gamma globulin injections (thanks MLP!) - unfortunately, it's only a temporary measure (provides immunity to a disease for only a few weeks) but better than nothing! Very similar to IVIG but I think gamma globulin 'injections' are more targeted to provide antibodies for a specific disease where IVIG, I think, is more a treatment for the immune system in general (I may not be 100% correct, still need to do more reading). I imagine it's not foolproof though... otherwise, why not give the vaccine and the gamma globulin at the same time and circumvent the 'suppression' caused by the remicade?? I wish it were that easy!


Gammaglobulin
Definition
Gammaglobulin is a type of protein found in the blood. When gammaglobulins are extracted from the blood of many people and combined, they can be used to prevent or treat infections.
Purpose
This medicine is used to treat or prevent diseases that occur when the body's own immune system is not effective against the disease. When disease-causing agents enter the body, they normally trigger the production of antibodies, proteins that circulate in the blood and help fight the disease. Gammaglobulin contains some of these antibodies. When gammaglobulins are taken from the blood of people who have recovered from diseases such as chickenpox or hepatitis, they can be given to other people to make them temporarily immune to those diseases. With hepatitis, for example, this is done when someone who has not been vaccinated against hepatitis is exposed to the disease.
Description
Gammaglobulin, also known as immunoglobulin, immune serum globulin or serum therapy, is injected either into a vein or into a muscle. When injected into a vein, it produces results more quickly than when injected into a muscle.
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