CIDP and Blood Clots

My husband was admitted to hospital last weekend and is still with a blood clot in his right lung and one in his left leg. The hospital doctor said that IVIG especially for those who take it for 5 days in a row can/could be a cause of blood clots. He was also saying that if my husband is to continue with as much IVIG as he receiving, he may have to be on blood thinners for the rest of his life.

Has anyone else experienced this? If so, what was the resulting decision regarding IVIG treatment versus blood thinners.

Both IVIG and steroids can increase the risk of developing blood clots. These usually start in the legs, and can break loose and go to the lungs (called a pulmonary embolism). This can be life-threatening. I don’t think there is enough scientific research to recommend daily aspirin while on IVIG therapy, but many clinicians recommend this, and it is probably a good idea, and reasonable standard of care.

To get to your concerns, a hematology consult and clotting studies would be prudent, and guide the decision-making process. However, after a pulmonary embolism, it is routine for patients to stay on Coumadin/warfare for at least a year. Many are on blood thinners for life. With the risks and benefits involved, I would insist on a hematology consult at a minimum. Also, make sure his doctor is spending time explaining things to you. If he or she is not, find another doctor.

As both a practitioner and CIDP patient, my prayers are with you both.

I am on blood thinners due to a clot not in my lung, but in my jugular in the neck. Very unusual I am told. I’m assuming relatedt
Also to my every two weeks Ivig. I haven’t been told lifelong blood-thinners but it wouldn’t surprise me. My best to your husband.
A Johnson

Aaron- most blood clots start in the legs, ore much less frequently, the arms. The lungs act as a filter if a clot breaks loose, and cannot pass through the rest of the body system. Your juglular vein clot is extremely unusual. If you had a central IV line in that jugular, it would be more understandable.

There are 3 things that cause venous clots: 1) hypercoaguable state; 2) stasis (lack of use, as in bedridden people), and injury to the vessel. As mentioned above, you should have clotting studies and a hematology consult. The IVIG can cause a hypercoaguable state, but there may be another underlying cause. If you are very inactive, you also are at increased risk, and injury to the vessel coul have been from a jugular central line, IF you had one.

Good luck, and God Bless.

Thank you so much for your help.