Chicken Pox and immunosuppresants?

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73monte
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   Posted 1/13/2009 1:07 PM (GMT -7)   
Hi All,
 
Some here are familiar with my daughters recent Hospitalization and dilemmas. Now we have another problem to try to figure out as well. Hoping to hear from anyone who has faced this one, but I think it's extremely unlikely. 
 
She is into her 3rd week of Prednisone and they wanted her to start on Imuran by now, but because she hasn't had the Chicken Pox, she is unable to start it. She can't just go and get the vaccine either, because once immunosuppressed, (as a result of the Prednisone), a serious reaction to the vaccine could result. Out GI said that they have never had an IBD patient that hasn't had the Chicken Pox, so is not sure how to proceed.  
 
If she contracts the Chicken Pox while on Prednisone, it would likely be extemely severe, and could even cause death. There are 2 documented cases. Sounds dramatic, but it's not.
 
If she waits several months to have the vaccine, the effectiveness of the Imuran could be reduced.
 
So right now, they want her to continue tapering the Prednisone, and go back on Pentasa. I don't think the Pentasa ever worked, considering how inflamed and with an abscess before going into the Hospital. 
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Rider Fan
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   Posted 1/13/2009 1:24 PM (GMT -7)   
I've never had chicken pox or had the vaccine and I'm 32 years old. I was on 6mp for 5 years and am now on methotrexate. My GI knows I've never had chicken pox. I saw an infectious disease specialist once about getting the vaccine and he said not to since I was on 6MP, but he didn't even consider taking me off my meds.

Because 2 people died from chicken pox they are letting your daugher go without maintenance meds? This seems strange to me. I think a second opinion from a GI or an infectios disease consult is in order.

I'm not a doctor, but if her white counts are in the normal range, shouldn't her response to an infection be similar to anyone else's?
 
Anyway, if you do get another opinion or get more info from her doctor, please post it as I'm obviously interested!  :)


Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 12.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.

Post Edited (Rider Fan) : 1/13/2009 1:33:27 PM (GMT-7)


73monte
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   Posted 1/13/2009 1:38 PM (GMT -7)   

Hi Rider,

I didn't mean to imply that our GI wouldn't use Imuran because there are 2 deaths recorded, and by the way, that was out of 7 known cases, so it's pretty high.

The concerns are well documented. If you read any of the drug pamphlets, you will see that the drug companies emphasis the warnings. Particularly with Imuran. 

I have to commend our GI for not taking this lightly.

As far as white blood cell counts and response to infection, I really don't know a thing about that, and will ask her next time in. 

Thanks for your imput.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Rider Fan
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   Posted 1/13/2009 1:42 PM (GMT -7)   
So ya after reading the net for a few minutes, apperently it's really bad to get chicken pox while on Imuran or methotrexate! Hmmm. Well I don't think I have much option at the moment as I'm recovering for a 8 month flare. Thanks for posting this question, I will have to bring this up with my GI next week.

Kind of frightening since I don't really have any other options at the moment.
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 12.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 1/13/2009 2:07 PM (GMT -7)   

We're in the same boat. If it's any consolation. This is the second time my daughter has taken Prednisone, and she didn't contract the Chicken Pox the first time, even considering she was in elementary school at the time with hundreds of kids, and likely exposed to it constantly. 

One more thing though. My daughter was tested for immunity to Chickent Pox, as our GI said that some kids get it so young and with such few symptoms that they never even knew they had it. Unfortunately for us, she wasn't immune, so hasn't had it. In your case, get a blood test and find out. 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Rider Fan
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Date Joined May 2008
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   Posted 1/13/2009 2:19 PM (GMT -7)   
The infectious disease specialst I saw actually tested me for anti-bodies, and sure enough I didn't have any, which means I have not infact had chicken pox.

One thing I thought of....I wonder what those 7 people were taking the Imuran for. I ask because if they are taking it for it's indicated use, cancer, then they will probably be on significantly higher doses than your daughter and I (methotrexate in my case). In the one case I found of someone dying from CP while on methotraxate, the fellow was taking it for Cancer. They didn't mention the dose, but it would probably be a daily dose, whereas I'm on a weekly dose.

I guess that would be some consolation....not much but some....

Where I live in Canada, I believe all children receive the vaccine now. So I guess that helps me out, especially since we're about to have a child. Is that not the case where you are, or was your daughter likely exposed at school because they haven't reached the age yet where they get vaccinated?
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 12.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 1/13/2009 2:33 PM (GMT -7)   

I did read that of the 7, they were all taking immunosuppressants for differing conditions. So therefore, could have been on a varied dosage. Of the 2, I not even sure if they died from complications from their disease, and that it might just be coincidental. I doesn't change the fact that it's still a serious issue. There is no doubt that one could get quite ill.

I too, live in Canada, (Southern Ontario), and we are starting to hear about more and more about being vaccinated. It seems to be getting popular here, but just since the last couple of years. 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


73monte
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Date Joined Mar 2007
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   Posted 1/13/2009 2:43 PM (GMT -7)   

I think I was mistaken in my previous post regarding differing conditions. If you check out the info. on this link, it indicates all 7 had IBD.

http://www.ccsg.org.nz/newsletters/gutfeeling/cpoxandcd.htm

 


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 1/13/2009 3:17 PM (GMT -7)   
73monte, please forgive me--I haven't seen many of your previous posts and am not familiar with your daughter's hospitalization and dilemmas. I'm just wondering if you are aware of any of the dietary changes that are known to help CD? The doctors wanted to put my son on Imuran and we chose to go this other route. We have been very successful. My son's GI doctors had no dietary recommendations whatsoever and are quite amazed at his progress, yet do not ask precisely what it is that we are doing.confused

CrazyHarry here on the forum was successful in healing a fistula (or fissure?), I believe, with diet. Perhaps Pentasa in combination with the SCD would do the trick for your daughter? I understand all cases are unique and not everyone has success with diet, but just thought I'd throw it out there--and maybe you are already doing this! Again, forgive me for butting in here...especially if there are extenuating circumstances of which I am not aware! I will keep your daughter in my prayers!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 1/13/2009 3:20 PM (GMT -7)   
73monte said...

I think I was mistaken in my previous post regarding differing conditions. If you check out the info. on this link, it indicates all 7 had IBD.

http://www.ccsg.org.nz/newsletters/gutfeeling/cpoxandcd.htm

 


Super.  :(
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 12.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 1/13/2009 4:07 PM (GMT -7)   
73 Monte - isn't your daughter a teen? I would suspect since most teens have had chicken pox or have been vaccinated she would be a lot less likely to be exposed to it than she would be if she were in grade school. I know it is still serious but probably a fairly low risk.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


73monte
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Date Joined Mar 2007
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   Posted 1/13/2009 4:41 PM (GMT -7)   

<<<73 Monte - isn't your daughter a teen? I would suspect since most teens have had chicken pox or have been vaccinated she would be a lot less likely to be exposed to it than she would be if she were in grade school. I know it is still serious but probably a fairly low risk.>>>

I remember thinking that it was extremely unlikely that she had Crohn's as well. You're probably right though, I would think the chances are slim.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


73monte
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Date Joined Mar 2007
Total Posts : 1499
   Posted 1/13/2009 4:53 PM (GMT -7)   

Hi EMom,

First of all, it's great to see that you are having success  with a more natural approach to treating the disease. I have done quite abit of checking into dietary changes to improve things. I'm sure you've heard this before, but, most of these diets seem to be very demanding to say the least. The other problem being, my daughter has always been an awesome kid, never caused a problem for anyone, always co-operative, helpful etc. the works. Until it comes to food. Even pre-crohn's she was a fussy eater. Just couldn't stomach the taste of certain things. I recently bought some liquid calcium for her, one tbsp. and she threw up, and that was the berry flavor.  

 Thank-You so much for offering your suggestions and prayers. Much appreciated. Good luck to your son as well. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


broomhilda
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Date Joined May 2007
Total Posts : 1488
   Posted 1/13/2009 7:56 PM (GMT -7)   
73 Monte- I know this is not going to help you at all. However, since the chicken pox nearly killed me with double pneumonia and a nasty liver infection ( ICU incubated for 2 weeks) in my early 20's, I must say thank God I actually had the dang mess! I do take Imuran and have had high doses of prednisone as well as Humira. My CD wasn't dx'd until some 24yrs after the pox. Sometimes there are unseen blessings in the journey we are forced to take. As for now....I can hardly wait for the shingles to hit later in life...Yippee!
I pray that you find an alternative solution for your daughter...
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


RightOutStraight02
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/13/2009 9:31 PM (GMT -7)   
Hello there friend,
I can't tell you what to do with your situation, but I just wanted to share with you that I, too, was diagnosed at the age of 13 with Crohn's in the terminal ileum and have used prednisone on various occasions. From your sig, I'm guessing your daughter is between 14-15 years old, and I saw here someone said that teens are perhaps less likely to catch something like chicken pox, which I am sure is a fair guess. However, I caught the chicken pox when I was 14 years old and had a very, very hard time with the whole experience, and that wasn't even while I was on Prednisone. I am sure that the likelihood of the same thing happening for your daughter is low, but as my luck with this whole disease hasn't been too great lately, I think it would be fair to consider staying on the 'better-safe-than-sorry' side of this one.
20 years old.
Dx'd with Crohn's at the age of 13.
Dx'd with Fibromyalgia at 15.
Currently taking 6mp and Flagyl.
10 inches of my small intestine removed October 2008.
When will remission come?!?!
 
Best regards to everyone here, bless you all.


CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 1/13/2009 11:36 PM (GMT -7)   
broomhilda -

how do you get double pneumonia? i had pneumonia recovering from my first surgery, so i know how bad it is, but i've never heard of double pneumonia.



73monte -

crohn's made me a picky eater (in fact, i think it makes all of us picky eaters cos so many foods disagree with our digestive tracts). i had to put that aside and suck it up and really give it a try when i was told i needed a colostomy. i had to eat all my "danger" foods which was really scary. anyhoo, catalog the diet thing in the back of your mind for some time down the road if the unfortunate happens and your daughter doesnt respond well to meds or takes a drastic turn for the worse. sometimes it is when we are faced with our greatest trials that only then are we willing and ready to try something seemingly off the wall for relief. that is where i was when i did the diet thing. i hope the doctors can remedy this situation.



kinda funny on the timing here of this topic as on tv the other day i saw the south park episode where the boys got chicken pox (super funny if you havent seen that one). did you know it is form of the herpes virus? the things we learn from television....
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


gachrons
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Date Joined Mar 2007
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   Posted 1/14/2009 6:48 AM (GMT -7)   
Hi Tom what I read about it with people with immune suppressed problems is that it is a individual thing and is either recommended or not depending on the indidvidual. What things did your daughters Dr. say about it like risk of having it or not having it pertaining to your daughter? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 1/14/2009 7:37 AM (GMT -7)   
Hi Tom I just wanted you to know that I also got the chicken pox when I was about 15, so getting it in the teens CAN happen, as it did to me and Rider. I hope they can find something to help get her Crohns under control other than Pred. Good luck!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

jujub
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Date Joined Mar 2003
Total Posts : 10392
   Posted 1/14/2009 7:47 AM (GMT -7)   
Have your daughter's docs done antibody titers for herpes? This could be a way of being sure whether or not she's been infected. There are cases where people get chicken pox when they're very young and no one knows it.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Rider Fan
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Date Joined May 2008
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   Posted 1/14/2009 8:13 AM (GMT -7)   
Nanners said...
Hi Tom I just wanted you to know that I also got the chicken pox when I was about 15, so getting it in the teens CAN happen, as it did to me and Rider. I hope they can find something to help get her Crohns under control other than Pred. Good luck!

Actually I've never had chicken pox or had the vaccine and I'm on MTX so I have the same dilemma as her daughter.


Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 12.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.

Post Edited (Rider Fan) : 1/14/2009 8:16:45 AM (GMT-7)


Rider Fan
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Date Joined May 2008
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   Posted 1/14/2009 8:17 AM (GMT -7)   
RightOutStraight02 said...
Hello there friend,
I can't tell you what to do with your situation, but I just wanted to share with you that I, too, was diagnosed at the age of 13 with Crohn's in the terminal ileum and have used prednisone on various occasions. From your sig, I'm guessing your daughter is between 14-15 years old, and I saw here someone said that teens are perhaps less likely to catch something like chicken pox, which I am sure is a fair guess. However, I caught the chicken pox when I was 14 years old and had a very, very hard time with the whole experience, and that wasn't even while I was on Prednisone. I am sure that the likelihood of the same thing happening for your daughter is low, but as my luck with this whole disease hasn't been too great lately, I think it would be fair to consider staying on the 'better-safe-than-sorry' side of this one.

Is not treating her Crohn's disease really safer though?
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 12.5mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/14/2009 10:32 AM (GMT -7)   

Hi Gail,

I'm not at all sure about it being an individual thing. The Dr. really hasn't said anything about my daughters risk. Since this is the first time they've encountered this, they're really not sure how to proceed. 

I think they're going to wait for a few months, then have the vaccine. What they're going to do about a maintanance medication is unclear. They did call and said to start taking Pentasa again, whick I don't understand as it didn't seem to be working for her. 

Tom


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 1/14/2009 10:39 AM (GMT -7)   

Hi Gail,(Nanners),

Getting the Chicken Pox is certainly a concern for us. I don't know what else they could use other than Prednisone, as the same problem exists with any immunosuppressant.

The only other thing that might be a possibility would be LDN, which I've only read about here. In fact here in Canada, I don't believe they are prescribing it for Crohn's yet, as it hasn't been appoved. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/14/2009 11:16 AM (GMT -7)   
Sorry Rider I meant RightoutStraight02.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

RightOutStraight02
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/14/2009 7:47 PM (GMT -7)   
RIDER


I did not suggest not treating the Crohns, I'm sure it can be understood that is NOT at all what I was trying to say. I understood it that the doctors wanted to try tapering off the prednisone before getting the vaccine, and all I was saying was that if it was me, that is what I would try first...obviously situations change depending on how tapering off pred. goes.

Furthermore, I don't think we are here to criticize each other's opinions, I was simply offering a "sorry for your situation, from what I understand here is what I would do".
20 years old.
Dx'd with Crohn's at the age of 13.
Dx'd with Fibromyalgia at 15.
Currently taking 6mp and Flagyl.
10 inches of my small intestine removed October 2008.
When will remission come?!?!
 
Best regards to everyone here, bless you all.

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