Behcet's Syndrome Society
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Hi everyone

Still hanging in there - this has been my worst flare to date.

Have had two doses of chemotherapy - cyclophosphamide plus three other bags of 'juice' to offset the side effects. So far so good with nausea and mouth ulcers which are supposed to come with it.

Have to take a liquid called Atovaquone morning and night to stop getting a certain kind of pneumonia. I find it fairly sickly and it is supposed to be taken with fat of some kind to increase the body's absorption. Banana smoothie seems to be the best thing to have with it.

The gabapentine is definitely helping the pain in my legs, although I'm quite unsteady - hard to say if it is the medication or the BD.

Have cut back on prednisone to 15mg and cut out indomethicine completely (after being on it two years).

I'm catching up on work and picking up a lot of mistakes which is very worrying, so have decided to simplify my business and only concentrate on a couple of courses - also try and get some help in.

Going to keep a very low profile over the holiday season - a couple of good books and movies.



8 Replies

Thanks for the update Lesley

I do like the matter of fact way that you deal with these is to your credit that you are keeping going. Especially having changes in medication with some being taken out and others introduced.

Sounds like a good idea to try and get some help in for your work and it's only natural that you will be making mistakes and if you are anything like me you will be beating yourself up about it a bit before taking it in hand.

Books and movies sound great, perhaps we can recommened some for you if you let us know your interests :)

Good luck with it all



Thanks Andrea - I have been commended more than once by different doctors.

It makes me wonder what would happen if I wasn't such a determined person.

Haven't been feeling too well the past two days and really should have spent them in bed but had to keep working if I want to keep my business - so maybe I'm a bit too determined.

Made a conscious decision today that I need to cut back on as much as possible and keep everything very simple.

Of course I might go into remission with all this treatment and then I won't know what to do with myself! (Truthfully I intend to keep everything very simple and not do too much even if I do get a burst of energy).



Sounds sensible to me Lesley

I am doing the same and save the determination if I can for the days I feel up to it, otherwise it can backfire. It becomes difficult then to know if it is a relapse or side affects or just plain pushing yourself too much too soon.

It is all a learning curve and I am really hoping for you to go into remission as they say.



Oh Lesley

Sounds like you have been to hell and back recently. I hope things are starting to improve and you make sure you relax and sit back and look after yourself.

I am a huge book reader and have a wide interest in all genres, so if you want some recommendations then let me know!




Hi Bailey - good way of descibing it!

I've started a new blog re books - they it will be easy to refer to.

Interestingly while I was really sick I didn't feel like reading - so must be on the mend.



Oh, Les, what a shit time you're having my lovely :-( The stuff you've written really does sound like hell and, if I know you, it's actually been even worse than you've let on. You should be so proud of how you cope. Are you sure you're not a Brit with a stuff upper lip? ;-)


Sounds like you have been through a terrible time. Really hope it starts to ease up soon. You are a trooper.

Jo x


Thanks Jo, Di and everyone.

Determination runs in my family - you should 'meet the parents'.

Actually I'm very grateful for the genes (but then again we've decided that their genes have given 3 out of 4 children weird autoimmune diseases).

Yes Di, I keep turning up to the doctors with a smile on my face and gritted teeth - a couple have woken up as to how sick I am. Also as to heritage pure Anglo Saxon as far as we can work out.




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