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Discussion Starter #1
Hey guys hope you are all well,

had my rheumy appointment today, alot of you know I was waiting for it and have been quite poorly. So heres whats happening:

1.Low white cell count -thinks its SLE (says im not on high enough doses of meds to cause this) and I have to have an HIV test too...even though I'm pretty sure I'm not at risk its still scary that he thinks it needs to be done! On blood form he has written "Refractory Lupus, ANA +, exclude HIV".

2.Should be getting Rituximab in the next 8 weeks (PCT are being begged) but he said he hasn't been turned down ever.

3.Having CK blood test ?Myositis - due to very painful muscles. He said if that comes back negative then I'll have to have muscle biopsy.

4. Continue meds that im on...no changes..continue in this ****..seeing him in a month.

5. Full blood work up as per usual.

I just feel awful...am worried about everything, am going to australia in 63 days! And now I have to do my methotrexate injection when today is the first day in months that I have felt relatively human.

:cry3::wall::sadwalk:

Love to you all xxxxxxxxx
 

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(((((((((((((((MOOKS))))))))))))))))

I am sorry you are still feeling so badly. Your doctor seems like he is really good and on the ball. I am hopeful that once the blood tests come back and you get on meds that work you will start to feel better soon.

I know you and I are having a lot of similar issues and I dont feel too well either but I keep saying with time this too shall pass.

Feel better soon my friend.:wink2:
 

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Hi Mooks,

I know, it is all so frustrating :(
On the upside, sounds like you have a good rheumy.

It might seem odd to be having an HIV test. I know it's not often done there but here it is a routine blood test, for everyone, and docs don't even tell you they're going to do it. Basically means that no-one makes any fuss about it and that's good.

I hope that you don't have to have the muscle biopsy, I remember Mum saying it was pretty unpleasant.

hugs :hug:
Katharine
 

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Hi mooks, so sorry your not getting the answers you need for a little while yet. I bought the Lupus book and the doc who wtore that said (I think ) that people with Lupus very rarely get HIV. Apparently because we have too strong immune reactions were not good hosts !!

Every cloud eah?

Hope you feel better soon, don't forget to buy your flight socks :hug: xxx
 

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:hugbetter: Mooks im so glad you have a good dr looking after you seems like he's on top of it, hope all the test go well, good luck

hugs Lin xx
 

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Hi Michele,

Good luck with all your tests. I hope it doesn't take too long to get the results back. The sooner things are ruled in or out the better.

Keep us posted on the Rituxan.

Take care,
Lazylegs
 

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Discussion Starter #7
Thanks for all your lovely messages, we are doing an HIV run tomorrow morning (I work in the lab) so going to get it on that one..should know results by the afternoon. I am sure I haven't got it. Its just my rheumy being careful as he treated a guy for SLE for 2 years and then realised he had AIDS not sle. apparently the symptoms are similar and it gives you ANA +, freaky huh. xxxx
 

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(((Mooks)))

I think that is the hardest thing to do for us. Is wait till the med kicks in or wait for tests to come back.

Sending you strengthening hugs your way.:hug:
Good luck on the tests.
Love,
Lyn
 

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I'm sorry to hear you've been feeling so crummy! Hope that things look up soon for you! Sounds like you could use some good news! It's good you won't have to wait long for your HIV results. It sounds like this guy is very thorough which is good. Hopefully you will be feeling better before your trip! Sounds like such a fun place to go!

Amy
 

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Hi mooks,

Fingers crossed you get the rituximab in time for your trip. I've recently come back from new zealand - I had a dose of the rituximab just before I left, and it was either that or the steriods that you get at the same time that got me there and back. Seems to be wearing off now (I don't to respond that well to it), but who cares - I got to go on the best holiday ever :) Keep the thought of going to oz (also a wicked country...)in your mind for the next couple of months - you'll get through all the rubbish, and be sitting at that airport departure gate before you know it!

Also, the smallest doses of immunosuppressants send my white cell count tumbling, obviously lupus/hiv need to be ruled out, but it's possible that it's the meds.

Take care

:hehe:
 

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(((Mooks)))

I hope they get to the bottom of this soon so you can enjoy that trip to Australia. Hope you are feeling better soon.
Hugs
Elle x
 

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Discussion Starter #13
WOOO Negative! Thought it would be but was still scary! Oh and also had meeting with my boss today and HR and either I give up all together or I work part time... :worried: What will I do for money?!
 
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