[laanbeth]

Hello my husband has has SLE, Polymyositis and dermatamyositis for 7 years he had had no flare ups in 4 years but just beofre xmas he got really ill. His muscles are causing real bad pain, and his fingers have all gone black and blue the consultant thinks there may be a chance that he may loose 3 of them. They have increased his mycophenilate and tenzipine and his calzort ( Steroids) but he seems to be getting worse rather than better. We saw his gp today and she seems to think he may have to go into hospital tomorrow. I just feel like I am in a waiting game at the minute. Has any one else had these syptoms and is there light at the end of the tunnel.. I feel so alone as most people dont even know what sle is? Thanks for listening Penny

 

[lazylegs]

Hi Penny,

Sorry to hear your husband is having so much trouble. I hope the doctor is able to turn this situation around.

My circumstances were a little different, but I too almost lost some toes. I was lucky the doctor caught it early on. High doses of steroids and therapy on my feet stopped it from happening. That situation has never repeated itself fortunately.

My thoughts will be with both of you.

Take care,
Lazylegs

 

[Maia]

That must be very scary for both of you - hopefully they will give stronger IV steroids and that will nip it in the bud and get him back on track to a state of relative health again.

Best wishes... and many (((hugs))) to you. I think there is hope, yes. Please let us know how it goes and take care of youself as well during this difficult time.

 

[LolaLola]

Dear Penny, I haven't experienced the same problems as your Husband, but just wanted to say Hi to both of you. Hang on in there and please talk away to us. The people here are all exceptionally helpful.
x Lola

 

[Taree]

Hi Penny

Just wanted to let you know I'm thinking about you both!!!

X T X

 

[laanbeth]

my husband

Thank you all for your replies.. We saw the consultant yesterday he does have gangrene in his fingers but it what they call dry gangrene "whatever that is" and apparently his dead skin which is about half his finger will fall off and he will end up with a much smaller finger.. been told what to look out for, but still confused as there is no major increase in his steroid. thanks again. Penny