Agrylin is not available in New Zealand, so hydroxyurea is used exlusively. Insurance is not an issue as we still have an excellent public health service and i don't pay more than $3 for a three month supply of ANY medicine on the subsidised list.
I've read that agrylin has bad side effects on the liver. You can't live long or well without a healthy liver so that would be a concern.
i've found reference to another drug PIPOBROMAN for reducing platlets and red cells generally. It was gazetted in NZ three years ago. I've asked a hematologist to find out if it can be prescribed. Good results and no side effects reported.
I have never heard of pipobroman but will ask my hematologist when I see him in Dec. I have regular testing which includes the liver profile and I have not had any problems as of yet taking agrylin. It is my understanding that it is much easier on you than hydroxurea but I amy be wrong. New Zealand must have a great insurance program. What are the side effects you experience on hydroxurea? Who makes the pipobroman?? I would like to know more. The cost of agrylin is over $600.00 per month.
I have never heard of pipobroman but will ask my hematologist when I see him in Dec. I have regular testing which includes the liver profile and I have not had any problems as of yet taking agrylin. It is my understanding that it is much easier on you than hydroxurea but I amy be wrong. New Zealand must have a great insurance program. What are the side effects you experience on hydroxurea? Who makes the pipobroman?? I would like to know more. The cost of agrylin is over $600.00 per month.
My coverage is not insurance' It is my entitlement as a resident of this country...not unlike the Canadian system. That you're paying $US 600 a month staggers me! So much for 'free enterprise' and a caring society.
I found pipobroman on the www. just google it with polycythemia. Hydroxyurea is cheap. when we get our drugs the actual cost is shown even though we only pay $3 for a three month supply, regardless of the actual cost. This only applies to drugs 'on the subsidised list'.
I can't say there are any side effects from Hydroxyurea . I remember I felt bad getting used to it, and have felt similarly since the dose was doubled to 1 gram a day (2 X 500 mg Caps)
Good to hear you are okay on Agrylin.
wouldn't it be great if this pipobroman was a better drug? Let me know what you find. I'm going to meanwhile persue it here.
Forgot to add.. my iron was low, so I tried every iron tablet I could until I got theiron coiunts back into the normal range. The hematologist told me WRONG. Its better for the PRV for the iuron to be low...and getting it higher would be counterproductive. So I've stopped the iron [ferrous fumerate]
Your entitlement on medications sounds wonderful. Drug companies and insurance companies have to much power here in the US but thats what we deal with for now anyway. My iron levels have remained normal and I have only elevated platelets. (red and white cells normal) I will research the pipobroman and share anything I learn. Thank You for your reply it helps to be in touch with someone with similar problems. Take Care
Oyvay___ Have you learned anything more about pipobroman? From what I have read it does not seem to be used here in the US much for platelet reduction? I would like to know more. My appointment with my hematologist was moved to January but will be sure to ask him about it then.
I had a great deal of problem with itching. Especially after a shower. Just recently my doctor asked me to start taking asprin on a daily basis. I take 500mg per day. I am very glad to say that this gave me almost immediate (within a day) relief from itching.
Hi,
I'm new to this thread concerning High Platelet Count. I recently had blood work done and was told my results were fine. To be sure, I asked the doctor's office to fax me a copy of my blood test results. I discovered three items were "out of range." Why would she tell me everything was normal? My BUN/Creatine was low (6.4), LDL Cholesterol was high (136) and my Platelet Count high (417,000). My question is: Should I be worried that my platelet count came in at 417,000 (that's 17,000 above the norm)? Or am I just being a little paranoid?
I would keep an eye on your platelets but not worry them at this time. It was not long ago that 450k was considered in the normal range. (2001) Follow up with another cbc in a few months. My platelets were 970k before there was any notice paid by my doctor. Platelets naturally fluctuate from week to week but usually not by much. Just my opinion but hope it helps.
Barb - I found out last Oct. when I had a hysterectomy that my blood platelets were, I believe, 761,000. Over the months they have gone a little higher and a little lower. Last month, 711,000. Had tooth infection/root canal in Dec. & thought that might be the answer (as doctor said infection can elevate platelets). Saw Dr. yesterday and should get results Monday. Tested negative for Rheumatoid factor. I have hypothyroidism - diagnosed about 5 or 6 years ago - thyroid nodules 3 years ago which motivated me to start medication (100 mcg Synthroid). Having headaches almost daily on upper left side of head (possibly sinus problems, but told Dr.). Does anyone else feel that their veins hurt from time to time? I am a 52 year old white female. I just found this site tonight and am so thankful!!! After almost 6 months we still do not know the cause. If it goes much higher he will do bone marrow test. Yesterday Dr. prescribed 325 mg. iron 2 or 3 times a day. I wish each of you well in controlling this problem. sapphire12112
I meant to post my abnormal blood test results from March.
High: Red Blood Cell Count 5.86 (range 3.80-5.10); Hematocrit 45.5 (range 35.0-45.0); RDW 17.1 (range 11.0-15.0); and of course platelets 711,000.
My gynecologist told me to take an aspirin a day (due to the high platelet count) but my hematologist didn't seem to think it was necessary.
My mother had Alzheimer's. Does anyone know if Alzheimer's could be linked to a high platelet count? My mother's dad and 3 of her siblings had forms of dementia - developing symptoms when they were probably in their mid-70s. I wonder if the high platelet count could prevent enough oxygen from getting to the brain...
Last edited by sapphire12112; 05-02-2004 at 02:37 PM.
Mom has suffered with high platelet count for years (10+). She used to take Hydrea daily to keep her counts down, but in the past 6 years she has been dealing with chemotherapy for Ovarian Cancer....which totally throws off her counts. She sees a Hem/Onc weekly and has her dosage adjusted appropriately.
Came up with High Platelets from blood work.....595. Since the initial test, it has fluctuated in the middle to high 400's. Have seen two hematologists. They recommended chest X ray (Normal except slight residual damage from having smoked 30 years ago, colonoscopy (normal) and abdominal ultra scan (normal except kidney cyst). Was advised to take 1 reg. aspirin per day.
I am monitoring the platelet count monthly and would not be too worried about it except generally I do not feel well...rash once in a while, not sleeping real well, and burning eyes. Am I missing something here?
My blood platelets have been slowly climbing, last week at 800, I am being referred to a hematologist and my GP told me to start aspirin regimen, I have been diagnosed with collagenous colitis, they believe that is where the problem lies, it is still scary to me. I have horrible musculo-skeletal pain and headaches, constant nausea, but I am told it is all related to the IBD. Who knows, I am being treated for iritis also. I have to have repeat labs this coming week and hopefully my count will have lowered. Does anyone know if there are any symptoms related to a high platelet count?
i was scheduled to have my tosils out this thurs , hospital called said platlet count was 814,000 retested me and it was 852,000 sent me in for surgery put iv in talked to anesthiologist ten minutes before they rolled me into OR
surgen and nurse told me it was cancelled because of platelet count
friday went to hemotoligist count was even higher , failed bleeding time test ,have appointmen next week for bone marrow biopsy and tommorow have to get sonograhm on spleen done. all i wanted was my tonsils out now all this . i'm 25 never had anything wrong with me but a bunch off sore tonsils
i reading up on all this cause like lots of you ,the doctors dont know why my platelets are high yet. i just want to know whats with the spleen and has anyone else had to get there spleen check?
They are checking your spleen for swelling. An oversized spleen has some relation to the affects of PV. I had high platelets (~950k) before beginning Agrylin. After taking the doses my hemotologist directed, I'm down in the range between 450k - 550k. My doctor is fine with this. Itching was a problem for me, but I've fixed that with lots of asprin. I know there is some concern about taking lots of asprin, but I darn near couldn't function when I got a itching "attack"! I treated is with antihistemines for a while, but I had trouble with the drowsiness. Don't worry to much, a good doctor will work with you to help you manage your symptoms, and the underlying causes. By the way, I was diagnosed with PV, and the high platelets go along with the high hematocrit. I control that with a phlebotomy every 8 to 12 weeks.
Hi , I am new to this board.But wanted to respond to High blood platelets.
i am female age 69.My platelets got up to 850.
had to have bone marrow Test so had to go on hydroxyurea been two months am doing fine down to 395. You will be ok Barb. Would like to hear from you
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Hi Junebug, My platelets are 704. U mentioned Hydroxyurea, but from what I have read on it, it causes leukemia if on it for over 5 years. Once your platelets came down, did they take you off it??? I do not want to go on it because I hear a lot of bads things about it. They say I have Polycythemia. All my blood is high, red, white, platelets. I am still not sure because I have not one symptom, and I feel 100% and I went to the Dr for a referal to a Gynacologist and she sent me for a blood test for the heck of it, and boom this is what they say I have. I have seen 2 Dr's already but the 2nd one says he cannot confirm 100 % yet, but is pretty sure. Can you let me know about Hydroxyurea? and if you are on it forever or just till the platelets came down
