Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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EssentialOilMom 08/01/2015

Hi,
I've had a blood clot in my jugular vein since March when a medi-port was placed for my IVIg infusions - they have since removed the port and the clot persists.
Last week I saw a hematologist who did a ton of blood work - one of the tests came back positive which was a Factor 8 - which makes me prone to clots.
My concern is I know that IVIg therapy can cause clots - has anyone ever heard of it actually causing clots? Should I stop IVIg in light of this new information? So many questions!
I didn't think of the IVIg question when my hematologist called so will call back on Monday and see his thoughts as well as call my neuro - but wanted to see if anyone here had ever heard of it causing clots.
I hate to give it up bc it does help - my next option is plasmapheresis.

Thanks all!

Steve0716 08/02/2015

Please call your doctors as soon as possible and let them know about this. After having a stroke and heart attack, I have been counseled many times by doctors, nurses, and pharmacists what to watch for because IVIG does raise the risk of blood clots. I do take IVIG weekly, but I don't have any risk factors for blood clots, in fact, I have ITP which causes a deficiency of platelets. My stroke and heart attack were really freak things that are unexplainable right now. But you need to give your doctors all the information so they can be sure to guide your care correctly. Please don't wait.

migurl 08/02/2015

I know that there are a few different types of the Factor VIII defects. I think only one of them is a disorder that causes you to be more prone to clotting. The others are bleeding disorders which means that they don't clot well and have to have transfusions for that. I don't know if that makes you lucky or unlucky. I'm not sure which issue I'd rather have. Sorry to hear that you have to deal with that too.

You should absolutely discuss this with your doctors ASAP. Having a port placed can cause clotting around the device, which could break of and make it's way to your heart or lungs. Have they put you on aspirin 81 mg or plavix to help thin your blood? I don't know if they can use those preventive therapies with your issue or not but I hope so.

Please let us know what you find out from the doctors. I'm very interested in finding out what they have to say. Good luck and HUGS to you.

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