low platelets, serious nosebleeds, amicar

[bety]

What does is used for bleeding using amicar?
What treatment have you had for low platelets and/or nosebleeds. My husband has been hospitalized three times recently for uncontrollable nosebleeds. When the usual first aid treatments for nosebleeds do not work, he generally requires plts transfusions. We would appreciate your input.

[Terri]

add some fresh pineapple to his diet to help with this plts. If he can have it.
It really does work. Bob was off of it awhile due to the sores in his mouth but just started again. He usually intakes one whole pineapple a day to try and keep them up.

[bety]

Terri, Thank you for the pineapple advice. Ed developed a sore tongue with the pineapple, but I think we will give it another try.

In my post, I should have written: What dosage is usually prescribed to stop bleeding with amicar?

All the best. bety

[Neil]

Hi Bety,
Would speak to his doc at length before using Amicar. While it can stop bleeding there is a risk of unwanted clots that can pose some severe problems.
Has he tried Nosebleed QR? It may help. Its available OTC at drug stores such as Walgreens or Walmart.
Filling the nostrils with gauze or inhaling through the nose while using cold compresses on the outside might help stop the flow.
There are a couple drugs that might help bit. Neumega, Prednizone and Danazol have had some limited success in some people.
There are some clinical trials being conducted with Lonafarnib and AM531 for platlet dependent patients. Understand there are some pretty strict participation qualifications. If you want to follow up suggest you contact the MDS Foundation at 1-800-MDS-0839.
There is an article on Lonafarnib on page 37 of the Summer 2006 issue of The MDS NEWS. you can access it from the Foundation home site.

[Frankie]

Oh my God…
I had no idea that my nose bleeds were connected to my low platets!!
…sigh….My doctor has never mentioned it. I really wonder about him.

Frankie

[bety]

Neil,

Thank you for your very helpful input regarding nosebleeds and amicar. I have used nosebleeds QR with great success, but when my husbands plts are very low, only a plts transfusion seems to help. I will follow up on the articles and possible clinical trials. Incidentally, a spike in his blood pressure seems to trigger the nosebleeds.

[Neil]

Hi Bety,
A spike in BP would very well cause a bleed at a weak point.
It could be a good thing. He might want to discuss it with his doc. How high would the BP go if there was no bleed?
There are times when the effects of MDS can be as bad or worse than the disease. It’s importanrt to stay on top of his health aside from MDS. We tend to focus on MDS and it is easy to have something else pop up while you’r concentrating on MDS.

[Frankie]

Betty…
what is nosebleeds QR? I checked with a pharmacist and he didn’t know anything about it.

Frankie

[bety]

Dear Frankie,
Neil posted above that Nosebleeds QR can be gotten over the counter at Walgreens and Walmart. I had my local Rite Aid Pharmacy order it for me (They are closing our store this month or in Aug.). You can visit the company website at http://www.biolife.com or call them about product info at 1-800-722-7559.
The product is a powder that comes with an applicator. It generally causes the nasal bleeding (if in the front part of the nose) to clot almost instantly and is considered to be non- toxic. I paid $6.76 for the box, which contains 2 applications. When my husband’s plts were around 25,000, the product did not work for him.
All the best, buy

[chuckk333]

Re use of pineapple for low platelets:

I have used 1/2 pineapple each day, juiced in a power juice extractor (Jack LaLanne $90 at Costco) for about 9 months without suffering any mouth sores or stomach upset.

My platelet count has improved from 60K to over 80K while doing the pineapple. When I can get it I add some black sesame seed ground in a coffee bean grinder.

[bety]

Dear Chuck,

I’m glad to hear that pineapples seem to help improve the plts count. I hope to start juicing the pineapples again, if Ed can tolerate them.
Right now, his wbc’s and plts. are very very low.
I appreciate your input!
All the best, bety

[bety]

Dear Neil,

We saw Ed’s internist this past week. He raised Ed’s b/p medication, which seems to make a difference. We monitor our b/p several times a day with a wrist sphygmomanometer. Ed resists, but I insist. Gradually, his b/p is approaching a more normal range but is still not good enough. I have found that deep breathing and slow breathing makes a differnce.
Also, biofeedback seems to work for me but not for him. My b/p used to be very elevated, but now the diastolic is generally below 110. When my b/p is low without medication, I try to imitate that feeling.

Thank you for your advice. It is always on target. bety

[Neil]

Hi Bety,
There is an article on OTC meds that aid clotting in the July 3 edition of the Wall Street Journal. It mentioned QR and a couple others. They all appeared to help to some degree unless the injury was quite deep. Some are also used in ERs.

[bety]

Neil, I tried to download the july 3 article from the wsj but was not successful. I will try my local library. Thanks for the reference. Regards, bety

[Author]

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