I am due to have IVIg and scared

Hi Guys, I'm due to have IVIg on the 5th August for over 3 days this is the first time I will be having it. My consultant has informed me that one of the side effects can be blood clotting. And would not recommend long haul flights (had mentioned that I intended to travel to Jamaica) I'm bit apprehensive as I have my friends and family over there and as I'm not able to work presently I wanted to go over regularly. I've recently returned after being there for 2 months however I was on steroids and was able to manage. Now that I will be having IVIg I am scared that I will be stuck in the UK and not able to go and come as I want. Going to Jamaica to see my friends and family is one of the things I look forward to and which keeps me sane. Has any one here traveled while on IVIg if so what happened.

Hi,I’m on IVIG for the past 10 years and I travel all the time.nothing happened to me so far.last time I took my IVIG and traveled after three days of my treatment from United States to Dubai.dont worry just keep moving on the plane and drink a lot of water.

Thanks Maggie.

Maggie said:

Hi,I'm on IVIG for the past 10 years and I travel all the time.nothing happened to me so far.last time I took my IVIG and traveled after three days of my treatment from United States to Dubai.dont worry just keep moving on the plane and drink a lot of water.

I have traveled a few times since starting IVIg. Twice now I have had my 4 week schedule brought forward one week with a 5 week break between because of travel. Must say that that last week has been tough (because you do slide back a bit) but I have recovered after the treatment.

As for traveling - no problem - just go at it like you always would as much as you can and take the usual air travel precautions. Last time was by air. Airline was great with transfers - I asked and they provided a wheelchair and escort (strange because I don't use one!) but got self and wife easily to transfers and through customs (etc).

Previous time I had my IVIg and same day started a 1700km drive over 3 days - automatic car with cruise control really helps.

Forgot to mention - I started my IVIg with 5 treatments over 5 days. Bit of a trial (because I HATE needles!) But I survived. Positive is the way to go - deal with stuff head on and don't look back (because things were probably worse then).

Michael C Stark said:

I have traveled a few times since starting IVIg. Twice now I have had my 4 week schedule brought forward one week with a 5 week break between because of travel. Must say that that last week has been tough (because you do slide back a bit) but I have recovered after the treatment.

As for traveling - no problem - just go at it like you always would as much as you can and take the usual air travel precautions. Last time was by air. Airline was great with transfers - I asked and they provided a wheelchair and escort (strange because I don't use one!) but got self and wife easily to transfers and through customs (etc).

Previous time I had my IVIg and same day started a 1700km drive over 3 days - automatic car with cruise control really helps.

Thanks for the advise Michael at lease I feel more confident to travel with the response I’ve received so far.

No worries, Darlin'. I'm more afraid of the effects of steroids than IVIG infusions. I've been having IVIG for 5 years now at differing rates, depending on what condition my condition is in. The port we put in makes the process simpler and less hard on my veins-as well as fewer needle sticks. Good ideas are: drink plenty water the day before the IVIG makes finding the vein easier; resting & drinking lots of water the next day helps your liver & kidneys process the gamma goop easier; continuing with 1 or 2 liters of water per day helps your body do the healing. I wouldn't fly the next 2 days after IVIG 'cause you've got to pee about every hour,but do drink plenty water when flying, because the air in planes is so-o-o dry. Need lots of lotion for too. Peace & Love


Cia said:

Thanks for the advise Michael at lease I feel more confident to travel with the response I've received so far.

Just go for it girl! I have been on ivig treatment for over 4years and it has never crossed my mind that I couldn’t travel by air.
I have travelled on my own several times and have always found the airport assistance fantastic but you must let them know you need some help when booking.
The staff have always taken my luggage off the carousel and put me in a cab.
Be sensible during the flight and drink plenty, (of water! ), and move your legs around, even if it’s only in your seat.
I find that my ankles swell a bit but soon go down.
You have no reason to think that you can’t have loads of happy times to come.
Enjoy the sunshine and the love of family and friends!
Jackie (in England)

Thanks Jackie feel much better now.

Others have covered this well, and I can't add much new, but will just reiterate what others have said. I have been on IVIG for about four years, and have never had any trouble traveling afterwards. In fact, I will sometimes arrange my schedule to get IVIG right before a vacation, so that I feel good on the trip.

One thing I do find, that is unrelated to the IVIG, is that I tend to get leg cramps. My neurologist tells me that is common with CIDP. The thing that works best for me to prevent them is to walk around occasionally. So, when I am on a plane, I always ask for an aisle seat, and then walk up and down the aisle occasionally. You get occasional odd looks, but it is worth it to avoid getting a leg cramp at a time when you are not allowed to stand up and work it out.

Bill

Hello

IVIG some people get better results then other look at all goods and bad for me I have little results but do not be afraid of it you will meet many people with CIPD I have been going for to years it has help my face and finger tips. My wife found this site for me and I hope some day learn to us it LOL. Alan

I have been traveled to Thailand for many years it is 24 hours flight my doctor has gave pain meds for cramps..



Alan Beamer said:

Hello

IVIG some people get better results then other look at all goods and bad for me I have little results but do not be afraid of it you will meet many people with CIPD I have been going for to years it has help my face and finger tips. My wife found this site for me and I hope some day learn to us it LOL. Alan

I agree with everyone else who has replied. If this is your first IVIGmtreatment, the suggestions about plenty of water (and a good night’s rest before the treatments) is key. I have gone in for treatmentsm2 days before air travel and if was fine. I was tired, and if I could do that over, I would rest at least 3 days before the trip. But, other than being tired, and going to the bathroom a lot, the results you will get from the IVIG treatmentmfarmout weighs any of your other concerns.mmstay positive!

I have been on IVIG for almost four years and travel whenever I want to, never a problem. Hope you enjoy.

Thanks to you all.

Hi, CIA, don’t be scared of IVIG, I have been having it for the past 2years and it is the best thing my doctor could of give me, before I had IVIG I could hardly walk. After my first infusion i had a new lease of life, my side effects is just a head ache for about 3/4 days, hope this info helps you?.. Good luck and god bless!,Annette…

Thanks Annette

I have herd time sleeping sometime it could be as long as 1 to 2 weeks before I can sleep I do not know how people can sleep even with meds for pain they only last for 4 hours and it is light sleep me and my wife cant sleep together I am sorry for my typing my hands do not work well ALWAYS have a good outlook I have a little girl she is only 6 sometimes I cry when she ask me to go to her games and why I am the only dad in a chair thank you big AL

Alan Beamer said:

I have been traveled to Thailand for many years it is 24 hours flight my doctor has gave pain meds for cramps..



Alan Beamer said:

Hello

IVIG some people get better results then other look at all goods and bad for me I have little results but do not be afraid of it you will meet many people with CIPD I have been going for to years it has help my face and finger tips. My wife found this site for me and I hope some day learn to us it LOL. Alan

Hi all, Relax.. IVG no problem. Just a little prick ,some nice nurses , a cup of tea , read a bit , doze a bit and you are topped up again. Been going 2 years and not sure how effective it is. Slowly getting worse but maybe it is delaying the whole process so that is good . Travel often no side effects all okay. Seems people are effected differently but you wont know till you do it . Good Luck Ernie

Smannakee said:

I agree with everyone else who has replied. If this is your first IVIGmtreatment, the suggestions about plenty of water (and a good night's rest before the treatments) is key. I have gone in for treatmentsm2 days before air travel and if was fine. I was tired, and if I could do that over, I would rest at least 3 days before the trip. But, other than being tired, and going to the bathroom a lot, the results you will get from the IVIG treatmentmfarmout weighs any of your other concerns.mmstay positive!

Dear Cia

I would like to inform you that I am on IVIG for number's of years and I am traveling twice a year in Europe, never had any problems.....Don't worry, is long you have plenty room in the aeroplane will be all right.......