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Farewell lovely Scandinavian Cruise

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#1 Vanessa


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Posted 21 May 2010 - 11:15 PM

I should right now be on my way to Southampton ready for my exciting cruise.

But what did stupid Vanessa do?

On Thursday afternoon I cleaned out my fish tank filtration system so that all would be in good order for neighbour who was on fish duty whilst I took to my life on the ocean waves. I did not factor in to the equation that my blood count was low, courtesy of Cellcept, so didn't even think of putting on rubber gloves. Later that evening a strange weeping lesion appeared followed by several more the next day.

A visit to the doctor yesterday afternoon (after I had finished my holiday packing) confirmed that I was going nowhere.

He took a swab and started me on a cocktail of heavy duty antibiotics. So annoying as I feel okay apart from being really guilty for my dear friend who was coming with me. She downright refused to go without me in spite of my begging so we will enjoy the lovely weather here instead.

On the plus side I may be able to have an earlier restart at the Cellcept. Royal Free are very keen for me to keep retrying even though my blood count has dropped too low twice and I have had to stop and start.

I am surprised that they feel it is worth restarting a third time.

Have others found that they have been able to tolerate the drug after several tries?


#2 Sheryl


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Posted 21 May 2010 - 11:44 PM

Vanessa, so sorry to hear that you aren't able to take the cruise that you were so looking forward to. The cost of insurance for these trips are quite high but now I am seeing how very important it is to have it. Especially for people with conditions that can flare easily. I hope you can find a few things locally to enjoy with your friend. I can't help you with the Cellcept question, though hopefully others have experienced what you are going through.
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#3 Buttons


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Posted 22 May 2010 - 05:18 AM

Vanessa, was sorry to hear you've missed your cruise and hope that the antibiotics work quickly for you. The only good thing is that our weather has been very good for a change so at least you can sit out and enjoy some warmth!

You take care

#4 Shelley Ensz

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Posted 22 May 2010 - 07:07 AM

Hi Vanessa,

I'm sorry you missed your cruise. I sure bet you'll always remember to use rubber gloves in the future, eh? Let it be a lesson to all of us, to try to avoid any shortcuts that might endanger our health, especially when we are taking immunosuppressants.

Does this mean you've transformed your vacation into a "staycation"? My husband was a little less than totally fabulous prior to his lung transplant, so we took a staycation last year, being sure to go to at least one new place each day, and we both found it very refreshing. What are you going to do, instead of?
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#5 Amanda Thorpe

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Posted 22 May 2010 - 08:32 AM

Hello Vanessa

That's not good! It is better that you stayed at home though just in case, there's nothing more miserable than being sick away from home.

I tried Cellcept a number of times and the side effect that made me stop in the first place kept coming back each time. I hope you have better success.

Take care.
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#6 miocean


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Posted 22 May 2010 - 08:52 AM

I am so sorry you are missing out on your cruise. I know with the anti-rejection drugs I am on that I am not supposed to clean litter boxes or bird cages but they never mentioned fish tanks. I learned to take out travel insurance several years ago. I was flying to Texas to see my sister and my cousin was going too, and the day before I felt so lousy I called my sister and said I wasn't sure if I could make it. I made my reservation late so the flight was over $700 and I had no insurance. I decided to go but just wasn't myself, slept a lot, did not want to go many places and found out when I got home that I had an infection. The next year we were flying to FL and I took out insurance which was a good thing because my catheter became infected and I had to give myself at home infusions. Everything was covered. I get it every time now.

I hope you start feeling better and can schedule the trip for another time.

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#7 Joelf


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Posted 22 May 2010 - 09:09 AM

Hi Vanessa

I'm so sorry to read that you're not able to go on your cruise; what an absolute pain!!! :angry: I do hope the antibiotics kick in very quickly for you.

I've not tried Cellcept (Mycophenolate) but am on Azathioprine which can have similar effects. My blood count has always come back at acceptable levels; the only problem I had was with my liver enzymes, but they seem to have settled once my dose was reduced.

At least we are having some decent weather at last so hopefully you can enjoy your break, albeit in the UK!!! ;) :D
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#8 Deb1million


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Posted 23 May 2010 - 06:28 PM

hi Vanessa

What bad luck!! Im so sorry this has happened, but as the others say, its better to be on the treatment now, than to be ill away from home.

Ive been on Cellcept for over a year now with no problems. My blood tests have always shown a low white cell count, but the doctors think the benefits of being on it with so many autoimmune overlaps are worth it. Ive been lucky and not picked up any infections, even though I dont always wear gloves when gardening etc.

I really hope your hands are healed very soon, and I hope you get to rescedule the cruise another time.

take care


#9 Vanessa


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Posted 25 May 2010 - 10:38 AM

Hi all,

I had good news today in that the swab showed no growth so I have been able to stop the strong antibiotics. It was a false alarm but although it meant I probably could have gone on hols I am happy that I did what the doctor said as it really is better to be safe than sorry.

Its really lovely weather and I have had a good couple of days and will go down to Brighton to visit my daughter for a couple of days later this week.

Also I have booked a trip to St. Ives, Cornwall for later so really looking forward to that.

Those of you on Cellcept- how low are you allowed to go with your white blood count? The paperwork said 3.5 but I was told I could go down to 3.0 which was where I was when stopped last time.

It would be interesting to know.