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Discussion Starter · #1 ·
Hi All,
First of All I just wanted to say sorry for not being around much. I have been having a really rough time and just been trying to hang on in their untill I 'd had my follow up in Bath. I actually missed the first appt for follow up as my hubby got up on the morn with the flu and didn't feel upto the 2 hr drive so had to cancel which was not good but nothing I could do about it.

I went back on Monday and saw one of the registrars. He spent nearly two hrs with me going through everything and discussing options with me.He gave me another course of pred even though I said I can't stand it and have only just got my diabetes back on track fron the last lot. But I also know that If I don't do something that I will end up doing something absolutely insane. Today again I can bearly walk and am so breathless, have terrible chest pain. I think the summer holidays have really taken their toll. So I took the prescription.

Anyway, the doc said that they would like to try me on another immunosupressant called mercaptopurine, I have done all the reading online about it but just was interested in anyone's direct knowledge and experience of this.

They have also asked me to be admitted for two weeks to see if they can look at the whole picture and improve things for me a bit which although it will be hard, is good that they are offering me this and it shows that they are acknowledging how stuffed I am. They want me to do some further investigations and get me on this drug while I am in and review pain meds and get me doing some intensive hydrotherapy and seeing another OT, the whole gambit really. I am very impressed and feel very privaliged and a bit more positive that atleast I may have some hope of improvement.
I am a real fighter but I have to admit what I have become over the last 18 mths has seriously been getting me down.

Lastly a big hello to all those of you who have been so kind in offering your advice and support to me in the past and and all the new members on the site too. I have been checking in regularly but just not posting much atall. I really hope that everyone is not doing too badly and am thinking of those who are, wishing everyone all the very best.

Take Care

Cassie :)
 

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Hi Cassie and a big :hug: to you. Things have been pretty tough for you for quite a while and it's great your docs are going to try and sort through it all and give you a better quality of life.

I know very little about Mercaptopurine except that's it's quite similar to Azathioprine (Imuran) in it's makeup (and presumably positive effects). I've done very well on Aza, it's been a godsend for me and settled things down a lot. Things aren't perfect of course, but I can't imagine what would have happened without it. I hope you have similar success with this new drug for you.

Do let us know how you get along :hug: and good luck :luck:

love
Lily
 

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Hi Cassie,

I am happy that your doctors are going to get it figured out and help you.
Hopefully soon you will be feeling better. Sorry that it's been such a tough time on you.:hug:

Good luck with the new med.

I have often wondered about you. It is great to hear from you.:)

Love,
Lyn
 

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Hi, Cassie. I haven't visited the forum for quite some time. Imagine my surprise to see a query about mercaptopurine! I have been on it for about 3 years (I think!). My rheumatologist thad started me on azathioprine, but it played havoc with my liver, so he switched me mercaptopurine instead. The way he described the difference between the 2 drugs to me was that mercaptopurine is what azathioprine turns into when it's metabolized by the liver (I'm sure that's a pretty simplified explanation). My liver enzymes stayed pretty high, and a special test was run to identify the source of the problem. It was found to be related to the mercaptopurine, so they lowered the dose a bit (I take 50 mg/day). I've been fine with it since then. It's helped reduce the pred. dose and doesn't seem to cause me any problems. I hope it works as well for you.

Renee
 

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Discussion Starter · #5 ·
Hi All,
thanks so much for the replies. Its helpful to hear from other people who have tried mercaptopurine. I thought from what I had read that it had things in common with azathioprine.

Renee it makes me wonder of they are trying this to be caucious. My last rheumy was going to put me on the aza but recently I had to stop the metho for a couple of weeks due to raised lfts and I am also diabetic, so maybe this is better or safer in terms of the liver?

Thanks Lyn I often think of you too and I really hope things have got a bit better for you now you have had few months on the metho.

Thanks Lily, I ts good to hear that this has helped others when other things have not, I still have hope!!

Thanks again.

Cassie :)
 

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Cassie,

Glad to hear from you!

It seems that your specialist is definately trying to take care of you!

Let us know when you go in for the 2 weeks!

Love
 

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Discussion Starter · #7 ·
Hi Lesley,
thanks for your reply!

Yes for this I am truly thankful. I am aware how awful it can be for some!!

Take Care

Cassie :)
 

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Hi Cassie :)

Sorry you've been having such a rough time :hug:

Those two weeks, though not easy, sound like a very good idea and, as you say, do give you some renewed hope for a new beginning :)

I hope that all goes well for you :grhug:

Katharine
 

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Discussion Starter · #9 ·
Hi Katherine,
thanks!!

Yes it will be a lot to organise with 5 kids. We are perhaps going to see if my mum in law can come over from portugal for one of the weeks to help out. The hospital is 2 hrs from home so will be a bit on my lonesome. This does worry me a bit as its is simply due to my responsibilities to my family that I have managed to plunder on each day, what if when I am not with them,I simply collapse!! :lol: Well I guess I 'll be in the right place of I do!! :lol:

Thanks again

Take Care

Cassie :)
 

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Hi Cassie, sorry to hear you are having such a rough time, but it does sound as though you have a good doc. Wow!!! 5 kids! I am in awe! I hope you manage to sort out arrangements for the two wks and that it really helps you.

Take care

Deb x
 

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Discussion Starter · #11 ·
Hi Deb,
thanks very much for your kind reply. Its not easy let me tell you. But they are very good and my eldest 3 do understand why mum feels so ill. Yes hopefully it will be worth the sacrifice. Think posistive. :)

Take Care

Cassie :)
 
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