Chicken Pox vaccine and steroids

[Livilou]

Hi! I'm back with a new question! We recently found out that Liv has active CD from recent MRE..report shows mild sticture at resection site with proximal dilatation and approx 10 cm of new inflammation in a different segment of ileum.
Also new involvement in rectosigmoid region?? Anyway, we have to decide which biologic to put her back on. In the meantime, GI put her back up to 9mg of Entocort...she has been on 3 mg most recently. Last spring when she was started on Humira, she was unable to receive her varicella booster shot...that was ok with pediatrician because she felt it was more important for Liv to be on Humira since her CD was active. Last week we had titers drawn to see if she has antibodies present (in case we have to restart biologic) and of course she is not immune to chicken pox (why would anything be easy)! Now. everything that I learned and know tells me that steroids and live vaccines don't go together well. GI recommended we get the vaccine and than wait the 21 day incubation period before restarting biologics. I don't think she should have the vaccine while on Entocort..she cannot afford to get chicken pox now (or ever!). I am waiting for pediatrician office to open to get their opinion, but I think some of these GI docs are crazy! Does anybody have any input or suggestions??? It is always something!!! Kim

 

[Tesscorm]

I so understand that there's always 'something' - why does it seem there must always be complications! :ybatty:

When Stephen was diagnosed, we were told that he cannot have any live vaccines (and I believe the chicken pox is a live vaccine???). But, perhaps there are different variations with the chicken pox vaccine??? Hope the ped can give you an answer!! :ghug:

 

[Clash]

We are facing something similar with the flu shot and remicade/methotrexate. C has had the flu shot before but each time it has made him really ill for a week or so, to the point where the ped reccomended he not get it. Now, it is flu shot time again and GI says it is okay but ped says he wouldn't risk it. We even talked it over with our pharmacist, which wasn't really of much help because he is not a big proponent of the flu shot in general.

I hope you get an answer from the ped. I know that entecort is not systemic but I would still worry about getting a live vaccine with a compromised immune system, but then again this whole CD roller coaster has made me a worrier.

 

[Livilou]

Hi Tesscorm! How are things going with Stephen? I have to share this with you, made me laugh. I was discussing with Olivia that she may have to start EN-preferably feeds overnight with an NG tube, until we can get her disease in check again. Of course she is anxious about the NG tube, so I was telling her about Stephen and Violet and some of the other teens who are passing tubes on their own without any issues. I mentioned that if she does require this treatment, that maybe we can skype live with you guys (if Stephen willing) to give Liv a live demonstration. Anyway, her reply to that idea was "Ok, is Stephen cute?" Oh my goodness, teenagers and their raging hormones! Just made me laugh! Hope things are going ok with you. And yes, chicken pox is live...scary stuff while using steroids.
Hello Clash! I understand your concerns with the flu vaccine...my son Trevor is also on Remi and his docs DID recommend that he receive the flu vaccine, which he did, no problems. I was worried about a compromised immune system, but he did fine (been about a month now) I know the shot is a dead/attentuated(sp?) virus, however the nasal mist is live, and they advised us against that. My non-IBD 12 year old could not get the nasal mist either because they do not even want my son exposed to live virus in another person! I am terrified of my children getting the flu..my husband had it a few years ago, he is very healthy and he was deathly ill...almost landed in the hospital.
I am on the same roller coaster ride with you...please stop the ride!! I would like to get off!! Kim

 

[Crohn's Mom]

Gabrielle was not allowed to have live vaccines while on steroids, 6mp, entocort or cimzia. She needed her Hep B vaccine before she started Cimzia because when they did their pre-check on bloods they found that she had no immunity; even though she had received all of her "required" baby shots. Strange. Anyhow, that's my 2 cents! LOL

And yes, I agree...some of these docs are indeed crazy ! LOL

 

[Tesscorm]

Crohns or not, there are PRIORITIES!!! :lol: I've added you as a friend so you have access to my album which has a pic of Stephen! :rof: I will ask Stephen if he'll skype with Olivia... but I'm sure he will But, I'll have to tell Stephen to make sure he fixes his hair, etc. We drive into the city together in the mornings, when we arrived this morning, he looked in the mirror before leaving the car and was annoyed with me because I didn't tell him his hair was messed up. Okay, WTF... he has a spiky, messy 'look'!! Were the spikes going in the wrong direction?? And how many times have I told him something only to be told 'OMG, I knooooow mom!' :ybatty:

Stephen's going for his MRE on Thursday... after that, we'll make a decision re his medication - LDN or remicade/humira???

I'll let you know re the skyping tonight...

 

[Livilou]

OMG, thank you for making me laugh, I really needed that!!! They are too funny!I know that eye roll thing all too well! We live every waking minute worried sick, and they worry about their hair being messy...too much! I will pray that you get good results with the MRE on Thursday. This decision making sucks!!! Thank You again!
@T..oh no, should I worry about Hep B too, I don't think they checked that one? Arrgh, just hate all this! Hope your daughter is ok. Kim

 

[Patricia56]

I recommend that you ask the pediatrician to consult an Infectious Disease specialist about this matter.

While steroids can be an issue when it comes to vaccination with live viruses, Entocort is a topical steroid and the maximum absorption rate is supposed to be around 21%.

Given the danger of chicken pox when she is on a biologic, particularly if combined with an immunomodulator, it may be worth doing it now and/or having her stop the Entocort long enough for her to do the Varicella and anything else she needs before starting the biologic.

I realize this may not be ideal but it may be the best solution in the long term. She is likely to be on biologics for a very long time. Might be better for her to wait 3 weeks now and get vaccinated than put her at risk for years.

 

[Livilou]

Thank You Patricia...I agree with you, rather take care of it now, not sure if GI will agree to stop the steroid? I am waiting for pediatrician to call me back. Does methotrexate pose same risk with live vaccines, I'm pretty sure it does? Thanks for all your advice! Kim

 

[Tesscorm]

We live every waking minute worried sick, and they worry about their hair being messy...too much!

You are soooo right! :yrolleyes: Coincidentally, Stephen just stopped my office and he said he's fine skyping with Olivia... so just let me know how/when you want to arrange it. Have never skyped so have no idea what you need, ie Stephen's email, phone number, etc. Just PM me when/if Olivia would like to go ahead with it.

 

[Livilou]

Yayyyy! Thank You so much Tesscorm (and Stephen too!) I will discuss skyping with Liv after school...maybe it will encourage her to be on board with EN, she is still very iffy. Thinking it's a good idea, especially if we have to stop steroids temporarily so that she can get her varicella booster.
BTW, what kind of pump does Stephen use, and do you use a 6fr. pediatric catheter??
I also have no experience with skyping, but my kids have done it, so they will help me figure it out! I will find out what info we need and private message you. Kim

 

[Tesscorm]

I don't know the type of pump, it's whatever they sent us... but I can look at home and let you know. And, yes, he uses a 6fr. It's worked fine for us and Stephen is 5'10", 160 lbs so pediatric size or not, it's been fine for him (I'm sure some of the problems people have had are due to having been given a larger size.) If the thickness of the formula is a concern, FYR, Stephen uses Tolerex but we were told to concentrate it (mix is supposed to be 225 ml water per packet, we were told to mix 150 ml water only).

I know everyone is different but let her know Stephen truly had very little problem learning to insert the tube. I think the reflex to gag when the tube reaches a certain point is the toughest to overcome but you 'swallow' the tube while drinking water and, when Stephen was first learning, I told him to try to visualize how tiny the tube was compared to a bite of food that he would normally swallow. I don't know if that helped but it really only took him two or three tries with the nurse and then he was on his own. But, regardless, I do feel for Olivia... even knowing and seeing Stephen do it, I'd be nervous too if I had to try it!

 

[mreyn]

Does anyone know... I read that if you're on remicade you cant even be around someone who had the chickenpox, measles, or other live vaccines...some for 3 mths... anyone know for sure?

 

[Farmwife]

I'm sorry I forgot the length of time but yes, that we need to keep our kids away form others that just had the shots. However I thought it was days not months. When I have time I'll look at my sheet I got from my doc.

 

[my little penguin]

Not the shots but the live flu mist since the person who gets the mist "sheds" .
Even before remicade& 6-mp DS was at risk for this with asthma.
The doc was only concerned of people in the same household getting the flu mist( live).
School was never an issue.

 

[Patricia56]

The best course is to consult your doctor about these issues as different doctors have different opinions.

If necessary, you can ask your doctor to consult with an Infectious Disease specialist regarding the risk and any protective measures that should be taken for a given vaccine.

Here's a link to the CDC webpage for Health Professionals with recommendations regarding vaccination of specific groups with immune suppression.

http://www.cdc.gov/vaccines/vpd-vac/varicella/hcp-rec-spec-groups.htm

Livilou - check it out as it has specific recommendations for people who have been on steroids including different recommendations according to dosages, routes of administration, etc. In general it recommends getting vaccinated but if the steroids have been above the specified level it makes recommendations for how long the steroids should have been d/c'd before the vaccine can be given.

According to this information the only issue for those who live with or have contact with an immune suppressed person is if the healthy person develops the rash/blisters. In that case they should avoid contact until 24 hours after all the blisters have completely resolved.

Now I have heard several times that there is a risk of exposure for a few days if the healthy person is given the nasal spray version. But this doesn't say anything about that so I don't know if that's accurate information or not.

I don't know about measles vaccinations. You could search the CDC website for info. I'm sure they have the same info for measles vaccine but you need to look under the info for Health Professionals.