Hi, can't seem to find if the anticoagulants, especially heparin and vitamin k antagonists like phenprocoumon are safe for us to use, or are they (somewhat) contra indicated? I know there are multiple meds for the cardiovascular stuff that are contra indicated, but I only find something about "citrate anticoagulant" being contra indicated. I don't know anything about it, so any information is very welcome.
Thanks!

[JimInMI]

I got a shot of heparin in my gut (not IV) everyday while in hospital for a recent crisis. I also used heparin years ago to clean out the port when I was dealing with an antibiotic infection. I asked why the local shot in the gut, and was told it is to avoid deep vein thrombosis. Said it was the equivalent of a baby aspirin. Didn't have a reaction either time. Jim

[WildIrish]

Hi, Ravenclaw,

I am not a doctor, but I have studied physiology and biochemistry, and I use a blood thinner for a prothrombin gene mutation. This is my understanding, but you should ask a pharmacist to be sure.

The citrate anticoagulates work by binding calcium to prevent clotting, and calcium is necessary for normal muscle contractions. Anything that changes the available calcium would have an effect on muscle strength and stamina, and it makes sense that citrate anticoagulates would be contraindicated for people with MG.

Heparin works by activating antithrombin, which is a protein in the blood that prevents thrombin from forming clots, and it therefore should not have any effect on muscle strength or stamina. I have used Lovenox, which is a low-molecular weight heparin with fewer side effects, since 2001, and it has not had any effect on my muscle strength or stamina.

The vitamin K antagonists reduce the amount of active vitamin K in the body, and vitamin K is necessary to produce prothrombin, which is a protein in the blood that is activated to form thrombin, which is necessary for a clot to form. Again, there should be no effect on muscles if you take this.

I use Lovenox because I don't have to get blood drawn every 3 weeks to test my clotting factors, and I don't have as many dietary restrictions as I would with a vitamin K antagonist, although there are still a lot of foods and supplements that affect blood clotting. Read more about them here under the heading Interactions: https://en.wikipedia.org/wiki/Anticoagulant

Lovenox is only available by daily subcutaneous injection, so if needles bother you, then you may be stuck with a vitamin K antagonist. However, if you are on a lot of other medications, it may mean the vitamin K antagonist is not a realistic option. It's complicated, and you need someone with a solid medical background to advise you.

Please ask your pharmacist to verify all of the above, and help you determine the best and safest option for you, based on your medications and medical conditions. They are usually pretty good about being able to figure out whether I can take a medication or not.

Good luck to you!

Rose

[kiwi33]

Hi Ravenclaw

As far as I can see anticoagulants should be OK with MG though (of course) discuss this with your doctor.

The info here might help you; http://pharmacy.uic.edu/departments/...l-2015-faqs#q1 .

Originally Posted by WildIrish

Hi, Ravenclaw,

I am not a doctor, but I have studied physiology and biochemistry, and I use a blood thinner for a prothrombin gene mutation. This is my understanding, but you should ask a pharmacist to be sure.

The citrate anticoagulates work by binding calcium to prevent clotting, and calcium is necessary for normal muscle contractions. Anything that changes the available calcium would have an effect on muscle strength and stamina, and it makes sense that citrate anticoagulates would be contraindicated for people with MG.

Heparin works by activating antithrombin, which is a protein in the blood that prevents thrombin from forming clots, and it therefore should not have any effect on muscle strength or stamina. I have used Lovenox, which is a low-molecular weight heparin with fewer side effects, since 2001, and it has not had any effect on my muscle strength or stamina.

The vitamin K antagonists reduce the amount of active vitamin K in the body, and vitamin K is necessary to produce prothrombin, which is a protein in the blood that is activated to form thrombin, which is necessary for a clot to form. Again, there should be no effect on muscles if you take this.

I use Lovenox because I don't have to get blood drawn every 3 weeks to test my clotting factors, and I don't have as many dietary restrictions as I would with a vitamin K antagonist, although there are still a lot of foods and supplements that affect blood clotting. Read more about them here under the heading Interactions: https://en.wikipedia.org/wiki/Anticoagulant

Lovenox is only available by daily subcutaneous injection, so if needles bother you, then you may be stuck with a vitamin K antagonist. However, if you are on a lot of other medications, it may mean the vitamin K antagonist is not a realistic option. It's complicated, and you need someone with a solid medical background to advise you.

Please ask your pharmacist to verify all of the above, and help you determine the best and safest option for you, based on your medications and medical conditions. They are usually pretty good about being able to figure out whether I can take a medication or not.

Good luck to you!

Rose

Thanks so much!
I am getting a very high dose of IvIg, which can cause blood clots. Together with my other risk factors (prednisone, high cholesterol, diabetes), there's been talk about preventive anticoagulants. Thanks for your advice, I don't have a problem with needles (use them a lot) so I'll take this to my doc.

[WildIrish]

Hi, Ravenclaw,

Just know that you will need to go off of the heparin 3 days before any procedures where you are likely to bleed excessively. When you have blood drawn, they will need to put pressure for longer than normal after removing the needle.

Watch for unexpected bruising--this would be a sign that you have too much anticoagulant in your blood. The danger with that is that you can have small bleeds internally, and that includes in your brain.

You might also ask about just using the heparin for a few days around the IVIG infusions, or only injecting on alternate days during the month, so that you are not using it all the time. Isn't the risk of blood clots from IVIG only elevated during and shortly after the infusion itself?

It is normal to have small "polka-dot" bruises wherever you give yourself the injections (normally in the lower abdominal fat). If you do the injection slowly, so the heparin has time to dissipate in the tissue, it reduces the amount of bruising. My blood is so thick that I don't bruise at all from the injections!

Please let me know what the doctor says. I am curious.

Rose