Nosebleeds/VW/Stymate questions

General
1

Hi again,

Well, my hematologist did not think the nosebleeds were caused by Nioxin. I've stopped using it nevertheless. He also suggested I see an ENT for cauterization. I was hesitant to proceed, but did so after hearing from someone that it's no big deal to have it done. The ENT told me there is no guarantee that cauterization will stop nosebleeds. Apparently, I was one of "those" patients who had difficulties afterwards. I had pain not only in the sinus cavity, but the roof of my mouth, my teeth, my jaw and into my ear along with minimal intermittent bleeding which really frightened me. I was pretty miserable for four days. I called the ENT office to inquire and they would not put me through to the doctor, nor would the back office medical assistant answer any of my questions if this was "considered normal". Her refusal to answer me only caused more anxiety. She would only respond with "each patient is different", then finally said "I'm sorry to have disappointed you in not answering your questions". Then, the doctor was out for the following week. In desperation, I contacted my PCP, who though she was not involved, did her best to alleviate my fears. She was a God send. I saw the ENT yesterday for a follow up visit and he said everything is healing well. I explained what I had been through and my disappointment in how things were handled. He provided no apology, merely stating that only a small number of patients experience what I had.

Anyway, I'm curious, all of you with VW - how typical are the nosebleeds? I've read somewhere where they will gradually disappear (but this appeared to be speaking about children). Since I never had them before, and they're only starting now, (I'm 62 yrs. old), will they always be with me? Also, regarding the Stymate nasal spray - are all of you using it only for nosebleeds or something else. Does it work well? The ENT told me to soak a cotton ball in Afrin and place it in my nostril should I have another nosebleed. I am very hesitant to shove anything up my nostril because the last time I had a bad nosebleed, even just holding the kleenex at the end of my nose - it pulled out a huge clot and I began bleeding profusely again. I'm quite terrified to put it bluntly. Apparently my insurance won't pay for the Stymate (pharmacy told me I'd have to pay $700 for it). If, and I'm praying it won't happen again, but IF I have another nosebleed, will Afrin help at all? Please share with me any information if you've had similar circumstances. Thank you very much.

2

Dear Gillegan Girl,

I hope you are feeling better now. I first got diagnosed with acquired vWD after severe nosebleeds started in my late sixties. I am now 73 and counting. (I still buy perennial plants and green bananas!)

Stimate, especially for type I vWD is very useful and very cheap considering the alternative of going to the Emergency Department every time you have a nose or mouth bleed to contend with. For most people, a spray in each nostril will materially increase the amount of Von Willebrands Factor circulating in the blood stream. That usually stops a mouth or nosebleed in less than an hour. The ED staff will usually give people like us an Intravenous infusion of Desmopressin (aka ddavp) to stop a small nose or mouth bleed. They will also take a CBC to see if you have sufficient Hemoglobin or do you need to be given Hemoglobin. An Hgb of less than 8 g/dL is the point where transfusions often are started. Most women have normal Hgb of greater than 10 g/dL.

I have used Stimate to stop bleeds from gums and, since I suffer from ArterioVenosal malformations (AVM) in my GI tract I have apparently stopped one or two very small GI ,(gastro-intestinal), bleeds, using Stimate. The GI bleeds cause very dark stool and I check the toilet and toilet paper daily for dark (black) traces. I also have my own Hemocult test strips which cost $80/100 tests and are much cheaper than going to the Hematologist first. I go after a positive test.

I also am diagnosed as a probable type III vWD case with inhibitors, which are molecules my immune system makes by mistake which, unfortunately attack VWF (von Willebrands Factor molecules). Because of the inhibitors, Stimate only has a small effect on my coagulation ability. I am classified as a ddavp non-responder. To stop a significant GI bleed I have been given large amounts of Alphanate and IGIV proteins to provide VWF and to fight the inhibitors. That is done in a hospital environment.

I always carry the Stimate with me on any excursion from home. Today I am going seventy miles for a cat-scan and sonogram of my kidneys, bladder and prostate to see if I have significant old-man's cancer. Since I can't get get Alphanate (also known as P-humate) in Tampa without a 24 hour delay, and any auto accident might produce internal bleeding, the Stimate might give me extra survival time to make it back to my base hospital, (a rural one), that keeps Alphanate on the Pharmacy shelf just for me!!

Please contact your Hospital Ombudsman or Case Manager, and your Hematologist to talk to your Insurance company. A $700 bottle of Stimate has about 25 doses. One trip to the Emergency Room to get a ddavp infusion costs about $1000. The math is pretty simple, even an Insurance Company can do it without having to take off their shoes to count past ten.

If you do need to have a transfusion of packed red blood cells (PRBC), talk the doctors into "apherized blood" . Apherized blood does not contain as much Heparin which is a blood thinner that encourages more bleeding.

John the elder

3

John - thank you very much for your information. I’m pretty frightened about all of this and if I might Bleed again. A few years back I was having some elective surgery and I told the surgeon about my VWD. He took it upon himself to order cryoprecipitates which was the WRONG thing to give me. Due to it, I became hyper coagulative and had a TIA! I’m hoping the cauterizatipn will stop my nose bleeds. I just don’t know what to expect!?



Johntheelder said:

Dear Gillegan Girl,

I hope you are feeling better now. I first got diagnosed with acquired vWD after severe nosebleeds started in my late sixties. I am now 73 and counting. (I still buy perennial plants and green bananas!)

Stimate, especially for type I vWD is very useful and very cheap considering the alternative of going to the Emergency Department every time you have a nose or mouth bleed to contend with. For most people, a spray in each nostril will materially increase the amount of Von Willebrands Factor circulating in the blood stream. That usually stops a mouth or nosebleed in less than an hour. The ED staff will usually give people like us an Intravenous infusion of Desmopressin (aka ddavp) to stop a small nose or mouth bleed. They will also take a CBC to see if you have sufficient Hemoglobin or do you need to be given Hemoglobin. An Hgb of less than 8 g/dL is the point where transfusions often are started. Most women have normal Hgb of greater than 10 g/dL.

I have used Stimate to stop bleeds from gums and, since I suffer from ArterioVenosal malformations (AVM) in my GI tract I have apparently stopped one or two very small GI ,(gastro-intestinal), bleeds, using Stimate. The GI bleeds cause very dark stool and I check the toilet and toilet paper daily for dark (black) traces. I also have my own Hemocult test strips which cost $80/100 tests and are much cheaper than going to the Hematologist first. I go after a positive test.

I also am diagnosed as a probable type III vWD case with inhibitors, which are molecules my immune system makes by mistake which, unfortunately attack VWF (von Willebrands Factor molecules). Because of the inhibitors, Stimate only has a small effect on my coagulation ability. I am classified as a ddavp non-responder. To stop a significant GI bleed I have been given large amounts of Alphanate and IGIV proteins to provide VWF and to fight the inhibitors. That is done in a hospital environment.

I always carry the Stimate with me on any excursion from home. Today I am going seventy miles for a cat-scan and sonogram of my kidneys, bladder and prostate to see if I have significant old-man's cancer. Since I can't get get Alphanate (also known as P-humate) in Tampa without a 24 hour delay, and any auto accident might produce internal bleeding, the Stimate might give me extra survival time to make it back to my base hospital, (a rural one), that keeps Alphanate on the Pharmacy shelf just for me!!

Please contact your Hospital Ombudsman or Case Manager, and your Hematologist to talk to your Insurance company. A $700 bottle of Stimate has about 25 doses. One trip to the Emergency Room to get a ddavp infusion costs about $1000. The math is pretty simple, even an Insurance Company can do it without having to take off their shoes to count past ten.

If you do need to have a transfusion of packed red blood cells (PRBC), talk the doctors into "apherized blood" . Apherized blood does not contain as much Heparin which is a blood thinner that encourages more bleeding.

John the elder