Solve the problems : Hi am 51 last Feb... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Solve the problems

Blue5151 profile image
10 Replies

Hi am 51 last Feb. 8 of finger got gangrene ! It started with blue fingers which I have had problems in the past with Raynaud's , Lupus,Lupus anticoagulant , May-Thurner , vertigo ! I have Rheurnatologish and Hematologist ! I went to emergency rooms for pain and didn't know what was going on had to change my hematologist to finally to help me that's when they put me in the hospital and started with the five blood transfusions ! Lots medications ! Rituximab .. chemotherapeutic treatments ! So far two ! The reason why am doing this is I'm just wondering why this is happening started looking online and seeing different things so I want to put my story out there !!!

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Blue5151
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10 Replies
Mylreaclairelee profile image
Mylreaclairelee

So sorry you are suffering with this you must be in so much pain. Thinking of you and hoping there is relief out there for you xx

Blue5151 profile image
Blue5151 in reply toMylreaclairelee

Thank you !!! But this happen last Feb. I have went really bad mouths and just trying keep it happing again ! My pain much better know !!! Have nerve damage but on nerve pain medicine it seems to be helping alot ! I just trying to what other people gone through and what they're doing about it I guess I'm just trying to learn more .

MissusTee profile image
MissusTee

You could do with iloprost infusion in hospital, or you are at risk of losing those fingers!

Blue5151 profile image
Blue5151 in reply toMissusTee

Hi , I never Heard of that is that !! My fingers doing lot bettter am just trying see what's out there and lean more about what people went through and how the doctors help them ! Is that a surgical procedure ?

MissusTee profile image
MissusTee in reply toBlue5151

No, iloprost is a drip and is a powerful vasodilator that you would have in hospital. I'm quite shocked that no one has thought to tell you, it is the standard treatment for severe raynauds.

MissusTee profile image
MissusTee in reply toBlue5151

versusarthritis.org/about-a...

Blue5151 profile image
Blue5151 in reply toMissusTee

Thank you !!! Am definitely going to tell both of my doctors this I have a hematologist and a rheumatologist ! Let know what say ! 🤷‍♀️ This why am trying do some own research !

honeybug profile image
honeybug

OMGOODNESS Blue5151

My heart ♥️ goes out to you dear. I’m sooo very sorry this has happened to you.

I just said a special prayer for you dear.

Best wishes for treatment and recovery from this.

😊🌸🌿🦋🙏🤗♥️😘😇🕊

Blue5151 profile image
Blue5151 in reply tohoneybug

Thank you !!! So far I all good and just working on this not happen again ! Still have all 8 fingers , just have nerver pain ! But finger are very sensitive and want lean all I can about this so that why am seeing what other people are going through and what there out come was !! What doctor did for them !

honeybug profile image
honeybug in reply toBlue5151

xxx

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