Vaccinations and immune suppressants - Behçet's UK

Behçet's UK

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Vaccinations and immune suppressants

lbishopp profile image
14 Replies

Hi. I'm travelling to Hong Kong, Vietnam and Thailand in January 2017. I currently take Humira, Mycophenolate and aspirin. I have read that I can't have 'live vaccines'. I've also read that Hepititus A & Yellow fever are both 'live vaccines'. My question is does anyone have experience of sorting vaccines whilst on immune suppressants? If yes, how did you get round it. Also if i need to take Malaria tablets, has anyone else done this.. I'm very excited about the trip but as you can imagine i'm also anxious about doing things right and giving myself enough time to plan everything. I am currently under London Centre of Excellence but my appointment with them isn't until oct/nov time and i don't want to leave it until then to raise the questions. If anyone has got any advise, i'd be very grateful to hear it.

Thanks

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lbishopp
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jzeis profile image
jzeis

This question is too important to leave it hanging for the next few months. You should really contact the Centre of Excellence and explain the situation to them, and ask if there's someone you can talk with in the meantime.

lbishopp profile image
lbishopp in reply to jzeis

I think i'll email them. thanks

sian35 profile image
sian35

Hi

Why don't you ring or email the centre and ask Sheila or bryony to ask Dt Buckland (is he the immunologist looking after your immuno-suppresants?)

I just, perhaps incorrectly ,assumed when I was on the same drugs as you that I couldn't have such vaccines so resigned myself to not going to places I needed them for a while so it would be very interesting to hear what they advise. They seem to have started a policy of not keeping patients long term on all these drugs but to give them a break and see what happened . I had to stop mine anyway for six months due to unremitting shingles and they explained this policy to me then.

Good luck planning your trip. I would like to go to Burma so know how important doing these things can be.

Sian

lbishopp profile image
lbishopp in reply to sian35

I do see Dr Buckland. They tried reducing my Humira last year but my symptoms just returned. I haven't managed yet to find a suitable replacement (tried Azathioprine) and now trying mycophenolate. My Behcets is generally well controlled so i'm definitely feel capable of travelling. Their seems to be some confusion as to whether Yellow Fever and Hep A are required or just advisory. I'll email the CofE and see what they have to say.

Burma sounds fascinating, I hope you are able to achieve it some day.

Sorry to be pessimistic but my son who also has BD did a similar vacation to south America. He was warned about having live vaccines but took the choice to have them and immediately became very ill. Just before he left he had his normal blood test but about 3 days after he left the hospital rang to say he needs more tests. He was now in America and was shearching round for a hospital to have these blood test done. He now has a serious condition,I am not saying it was any thing to do with having the live vaccines but this condition seem to start after he had them. Make sure you have a good travel insurance as even thou he paid for a comprehensive one he still had to pay almost £1000 after he had to visit a hospital in the USA. And make sure you take a good supply of your drugs plus a bit extra as he also had a reaction from the drug coating he was given in the usa. Get some good advise

lbishopp profile image
lbishopp in reply to

Hi Thank for your comments and i'm sorry to hear your son has had so many problems. I don't think i would risk having the live vaccines from the stories i've heard. The travel agent said that their travel advice that give out when booking trips to these countries is it's not compulsory but to check with Fit for Travel. They seem to say some of them are advised but not required. It's know what to do for the best. I am a regular traveller and have an annual policy with worldwide cover that specifically covers Behcets. I always try to pack a good week or so extra incase of delays. It's a minefield

sian35 profile image
sian35 in reply to lbishopp

Hi

Hope it all works out for your trip.

i was wondering who your insurance cover is with. I am keen to start to do some travelling once a big work project I am involved in has finished.

Does the behcet's affect your eyes. i am always a bit nervous about getting an eye flare i a different country. Did manage a holiday in the Yorkshire Dales in May - not worldwide travel but still an achievement! The eye hopsital in Bristol kindly worked around my holiday which was a new experience for me.

Kind regards,

Sian

lbishopp profile image
lbishopp in reply to sian35

Thanks. I have travel cover through Natwest (i have an account with them) but got agreement for them to cover Behcets, they have it listed separately on my policy. It's an annual policy which I pay a supplement on top of about £50 (which is very good). I don't have eye trouble but have had a DVT due to behcet flare which meant it removed most of my other choices when insuring. Before I was covered with my Bank, I got cover through a company called Flexicover. They covered Behcets and DVT (which most others didn't). It cost me about £130-140 to travel within Europe for a week. I don't know what it would be worldwide or for a longer duration, but they were very good and it was very easy to sort.

Hope that helps.

Lynn

sian35 profile image
sian35 in reply to lbishopp

Hi Lynne

Thanks for this info. I bank with barclays and will ask them about insurance cover. Otherwise i will bear flexicover in mind.

Kind regards,

Sian

magician profile image
magician

Hello,

The link below leads to the guidelines on vaccination, as published by the World Health Organization:

who.int/ith/2016-ith-county...

You might want to check if CDC Atlanta (center for disease coordination, if I am not having brain fog at the moment ) has a published guideline too.

magician profile image
magician

For planning:

Please do check the policy of each airline that you expect to take for your trip. BA, for example, does not allow meds into their airplane ref - oops, there goes your Humira. Learned it the hard way recently.

I travel extensively and assumed that all airlines accept meds into their ref. Very wrong assumption.

Carry with you a doctor's letter explaining that you need to hand carry your Humira syringes, and the need for refrigeration. This kind of letter makes me feel reassured whenever I go through security control. But did not help in getting my Humira inside the BA ref.

Worst case, wrap your Humira in waterproof container. BA staff gave me all the ice cubes they could find. But the ice melted and infiltrated one of my Humira. Bye bye Humira, missed my dose ( only a few days, fortunately).

You might also try using the 'gel ice packs' that are available in the pharmacies. They will lose the cold but at least will not melt into your Humira.

Check also if your meds are available in your destination countries, and the prices. Humira is not available in some countries, especially the emerging economies. If available, you are lucky. But the price is so much higher.

Anyway, it all depends on where you are traveling from and the consequent travel time. If you are traveling from London, your Humira would be out of your kitchen ref for approximately 24 hours before you reach the hotel ref in Asia...

Best of luck and enjoy!

lbishopp profile image
lbishopp in reply to magician

Hi Thanks for this information. I've travelled with BA quite a few times and always taken my tablets with me but never taken my Humira so thanks for letting us know as we are travelling with BA. I do have a specially designed cool bag with cool blocks that was sent to me by the manufacturers of Humira. I was also sent a letter to carry with the medicines advising what it is and why i need it. This was provided by the Lead Pharmacist from Healthcare at home (who deliver my Humira). Did you have this also when BA refused. I'll contact BA directly and get some sort of written blurb. I only inject once every 3 weeks but as we are travelling for 3 weeks, it's just sods law that it will be right in the middle of when we're away. Nothings ever easy, but i'm determined that i'm going to be in control, rather than it controlling what i do.. Good tip about Humira being available as well. Thanks for your help. x

magician profile image
magician in reply to lbishopp

Yes, I had the doctor's letter with me .

After the incident, I saw that BA's policy of refusing medicines into the plane ref is on the BA website. I am taking the easy way out - taking other planes - instead of having to speak with BA.

I have a "cool bag", but it does not last long enough for long haul. I hope yours does.

Do check the vaccination schedule - one of the available hep A vaccines needs to be taken 6 months before travel. I hope you will find the best choice for you.

Best of luck

magician profile image
magician in reply to lbishopp

It’s been ages! I was recently shifted from “every2 weeks” to ‘every 3 weeks” on Humira. I noted that you have been doing every 3 weeks way back then. Did you have it every 2 weeks before shifting to every 3 weeks? If yes. How was your experience?

I noted more aches and pains after shifting to every 3 weeks. I can live with these though as long as my eyes do not flare up.

Thanks,

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