Benlysta; Raynaud's

I saw the same annoying fine print Julie did about the new lupus drug, Benlysta: "Use is not recommended for patients with lupus that has caused severe kidney... problems."

Here's a little general info that might help: Lupus and Scleroderma are both auto-immune diseases in which the body attacks itself, but it looks like other similarities are only surface. Scleroderma attacks mostly skin and connective tissue, and from what I've found, the worst damage results from attacks on connective tissues that  surround or are inside the body's organs. Lupus tends to attack joints and bones. Raynaud's (the red/purple/white cold toes and fingers) often occurs with scleroderma, but not with lupus. Both lupus and scleroderma can result in organ damage, but for rather different reasons, I think. There are certain drugs recommended for scleroderma: www.mayoclinic.com/health/scleroderma/DS00362/DSECTION=treatments-and-drugs.
These include blood pressure drugs that dilate the blood vessels (which also helps for Raynaud's and kidney problems) and drugs that suppress the immune system. Bill is already on the latter; what about the former?

Raynaud's disease is caused by spasms in the blood vessels. I happen to have it myself. The toes and fingers turn white, red, and/or purple for no apparent reason. It affects each digit separately, sometimes creating a kind of "rainbow" effect. For example, a given foot will have one bright red toe, one purple toe, a white toe or two, and maybe one of normal color. At other times, all toes or fingers will be that blue/purple color. Can be painful; heat helps for long-term relief but creates painful short-term tingling or burning sensations while warming occurs. For further info on symptoms, see www.mayoclinic.com/health/raynauds-disease/DS00433/DSECTION=symptoms.

There are several drugs that can help Raynauds, and some to avoid that can worsen it. These are described, with specific drug names, at www.mayoclinic.com/health/raynauds-disease/DS00433/DSECTION=treatments-and-drugs. In general, helpful drugs open the blood vessels wider. I don't know if Bill is already on any of these. Given the number of drugs he's already on, it would be important that the Raynaud's medication doesn't counteract or interact dangerously with any of them. Xanax is not listed for Raynaud's, but it might help relieve the pain? When Raynaud's flares up for me, it helps to soak the affected hand or foot in a pan of very hot water for 15 minutes, dry it, then cover with electric blankets. The rainbow discoloration often increases during the first few minutes of hot water soak, but that doesn't seem to cause any harm. Water needs to be very hot, but test the temperature yourself to be sure it's safe, because Bill might have some nerve damage in the hands and feet that would prevent him from sensing the temperature accurately.

Thanks for sharing the good news of cardiac chair progress, more swallowing, feeling alert, continued weight gain!

Best to all,
Janet