Anyone Using Desmopressin? Possible Pandas Diagnosis?

[looneymom]

Just wondering if anyone is using Desmopressin to help keep up their blood pressure up? For the last few weeks, Tyler's blood pressures have not been staying up over the 110 (top number). So the cardiologist has started him on this medication. Has anyone experienced any side effects from this medication? Anything I should be watching for?

We finally got the Cunningham Panel antibodies test (PANDAS) back. The test is not negative and not on the positive side. The test results were in the middle. So PANDAS cannot be totally ruled out yet. The cardiologist sent the results on to the neurologist. So our neurologist is studying the results and looking back over my son's medical records. There are several things that have happened in the past several years that indicate PANDAS could be the problem. So this mom is really on pins and needles. I know that PANDAS can be treated with IVIG but I'm not sure that is the route to go. My son has a low IGA and the neurologist has said in the past that patients with a low IGA cannot use IVIG. So what are the alternatives for treating PANDAS? Please share or send a p/m.

Rachel

[YolaInBlue]

I was recently prescribed desmopressin. My problem is frequent urination when I'm symptomatic. I loose more water from my body than I am able to replace with drinking and increased salt. Lost 4 pounds in one day a month ago. I also have low blood pressure (today: 102/54 sitting, 94/50 standing) and take 0.1mg florineff daily and midodrine when I am dizzy.

The doctor that prescribed dessmopressin for me put me on IV for 2 days to replace fluids and then gave me dessmopressin. I started with 0.5mg twice a day and was told that I can increase to 0.1, if needed. I stayed on 0.5mg. It raised my blood pressure nicely. In a hospital it was 116/65 sitting. I was told not to drink too much at the time, but still drink something. Desmopressin can lower blood sodium, if you drink too much while on it. I had blood tests daily in a hospital for 3 days and I continued once a week for a month after discharge. Low blood sodium can have scarry effects. Mine was good. The pill workes for about 8 hours for me, no side effects. I had 2 cups of liquids while on my day dose and 2-3 cups and some salt between each dose of desmopressin, but with my florinef. I don't take desmopressin on regular basis now, only when symptomatic and dehydrating. For me, balancing my water intake and electrolytes with florinef and desmopressin is a lot of work. I took it on regularly for about 6 weeks. I would say it helped in raising blood pressure.

[looneymom]

Thanks for the information YolainBlue. My son is not on florinif anymore so maybe it will not be as hard to balance fluid intake. He has been on .1 the last two days but his blood pressure was still running low. Today it was increased to .2 and his blood pressure has been much better. So I'm hopeful this medication will work better than the midodrine.

Rachel

[Guest Alex]

I'm not using desmopressin, but if you watched the latest video I posted featuring dr Raj at the Dysautonomia conference in July he mentioned this drug as being usually prescribed for "extraordinary" situations (such as social events that POTS patients don't want to or can't miss, or something along those lines) and not as a daily drug.

The low IgA people can still receive IVIG treatments but only certain brands of it - those that contain no IgA. IVIG contains mostly IgG anyway - I believe the percentage is close to 99%. Something worth talking to your son's doctors about.

Best of luck,

Alex