Confused

[stevenjust]

I am confused and a little angry with my 3 month check up today. I have seen a dr that I had not seen before, I have just moved hospitals and my notes still have not arrived after 3 months.

Basically the dr I saw has stated that I should not be on hydroxy unless my platelets are nearing or have ever been 1500+, they have been in the 400's since I started treatment, he said the reason I was on them is due to me being part of the PT1 trial, and as he never had my notes he cannot tell whether my platelets have ever been 1500.

I asked him direct, are you telling me I have been poisoning my body for 2 years for nothing, to which he replied "it's upto you if you come off of them"?????

I said you are the dr you advise me, he then said as he doesn't know my previous platelet counts I need to stay on them.

Well do I need them or don't i? Do I just stop taking them and carry on with the aspirin?

I'm angry that as to why he has been the only dr to say this to me and I may of been taking these when I didn't need to.

I will ask to see the consultant at my next appt and get a definitive answer but has anybody else had this problem?

Thanks

Justin.

[Aime]

Hi Justin, sorry to hear of your rough time. Some medics don't realise what our MPN means to us, the hassle and worry it causes and more hassle is not what you are needing. Perhaps Maz and Prof Harrison can help here. I would ask to see your consultant as soon as possible if I were in your position as I would not be happy either. You need answers from a reliable source. Best wishes Aime

[rubyrubyruby]

Do you have ET or PV ?

Are you under 40 ?

The reason I ask is that 1500 is the magic number for platelet levels to trigger the decision to go on meds. I have had this number mentioned many times but not sure whether to do with my age as well (I am under 40). Hope this helps

[stevenjust in reply to rubyrubyruby]

I have ET and was 40 when diagnosed am now 42.

[rubyrubyruby in reply to stevenjust]

I have ET as well. I have been told since first diagnosis by 2 different haem that when my platelets reach 1500 that will be when I have to go on stronger meds. My platelets are currently around mid 800 and am just on aspirin.

[rubyrubyruby in reply to stevenjust]

Have you had a BMB to get your diagnosis ? As don't understand why you were put on anything when your platelets aren't really abnormal - around 400 is normal !!

[stevenjust in reply to rubyrubyruby]

I did have a BMB and if I remember my count was well over 1000.

[GJ18]

I have 3 x 500 hydro a day , plus aspirin I have never had a platelet count as high as 1500. I first went to the consultant with et they now consider it a mix of PV and ET ... I think the whole subject is very confussing , I read so many different stories on here and how little or how much treatment different people have , I do wonder if anyone really knows what's best.

[Hidden]

Surely whether you are on them or not is down to the other risk factors and not just your count. My highest was just under 900 but because of other problems and risk of clotting I am considered high risk. I think I read the differing risk factors in a booklet given to me on diagnosis, i think it was in MPD's and written by the Lukaemia society.

[Hidden in reply to Hidden]

I was similar to you Yorkie. My platelets were over 800 and had already had erythromelalgia in my toes which were turning purple. I was put on hydroxy immediately on diagnosis and need 1000mg a day to keep me at around 400. I was told that the risk from clotting in the short term was more of a threat than taking the hydroxy long term.

[lizzziep]

My haem told me once my platelets went over 1000 I would have to go on the treatment, which they did after a couple of years being around 800 - 900. I was just on aspirin until they went over 1000, I've been on hydroxy since November and at the last check they were down to 650. I think I would ask for another doctor to check all the results, if your platelets were over 1000 they needed to be brought down, and it sounds like the hydroxy is doing it's job keeping them around 400.

[Bromley]

Hi, I understand exactly how you feel. When first diagnosed I did not want to take meds and as I was fit, consultant's words, I took only aspirin for two years. I was 62when diagnosed. The haematologist kept referring to my age and as I approached 65 made it clear that age was my biggest indicator and I should take meds. My platelets have never been higher than 850 but I was put on Hydroxy and Aspirin and it took many visits and changes of dose to bring them to 400 and below. At my last three monthly check they had begun to rise,600, and my dose was increased to 500mg every day but 1000 on Sat and Sun.

I have been to many forums at St. Thomas and many people have higher platelets and are not on meds, but they are much younger. I can not get an answer as to why when my platelets are not that high I need meds and am thinking of coming off as I hate what it must be doing to my body. I have been on Hydroxy for six years.

The best of luck but keep asking.

[RebeccaLubitz]

Justin, It is possible to symptomatic at any platelet count. If you have had any sort of warning or symptoms, no matter what your count is, you need to be medicated. Your count can be a million and if you have never had symptoms, some experts would only put you on baby aspirin. The experts disagree on exactly how to treat. Have you had symptoms. I had ocular Migraines and atypical TIA (spinning room). These are considered symptoms or precusors to strokes. My highest platelet count was 795,000. I still had symptoms in the 400,000s. My platelets need to be below 400. Sounds like a change of doctor is in order.

[Mazcd Partner MPNVoice]

I have had some advice from Prof Harrison, she has said that the dose of hydroxycarbamide can vary between patients due to symptoms and other medical conditions, and if anyone is concerned about their treatment plan they should discuss it with the consultant and if still not happy then to ask for a 2nd opinion. I hope this helps you and everyone else who may be concerned about their treatment plan and medication, whatever they are taking. Maz

[RebeccaLubitz]

Another risk factor is age, if you are over 60, they recommend medication to lower platelet count.

[Michael56]

Hi Justin

I understand your anger, to have these conditions is bad enough without this hassle and uncertainty.

We all have similar conditions, I have PV and have had since I was 49, I'm 57 and on hydrox 500gm a day, I still have minor changes in my results each 3 months but we all respond in a different way so only you and your consultant can plan ahead. Take this person to task to sort this out with you, he has a duty of care and needs to put you at peace of mind, not just fob you off, if you are not happy tell him, and if he wont listen, tell his boss at the hospital, make some waves here to put your mind at rest and good luck!

[eatentrifles]

Hi Justin, further to the reply from Maz, there is an article by Prof. Claire Harrison in the current edition of the MPN Quarterly Journal on the mpn.com site relating to ET, which you may find useful.

It can be found here : mpnjournal.org/how-i-treat-...