Anyone with MF not yet taking Hydroxy? Im over 60, other than fatigue have no symptoms. But platelets are steadily falling this year.

[selkie]

Wondering has anyone a clue how the disease would pan out if allowed to take its course without cytotoxic drugs?

[Hidden]

I would love to know this too. We are led to believe that the result would be a definite future stroke or heart attack so frightened not to take it. Have been on this medication for nearly a year and several symptoms have disappeared but still lots of problems. I do wonder sometimes if the blood results can fluctuate and go back to normal intermittently. The reason I wonder is that I was told that the last time my bloods were normal was in 2009 but I have seen other results previous to this in fact in 2004 which show raised platelets and this was not picked up or commented on at the time, making me wonder how the results could have been normal in 2009. I don't know if any research has been done over say, 10 year periods to see if the results have perhaps suffered spikes which then recovered naturally. I wish I knew this as I feel the assumption is that once the results have changed they will not go back to normal and I don't have the information or research results to truly believe this is the case, No one seems to be interested in receiving feedback from patients about the last ten years of their lives to maybe give a better insight into the pattern of the disorder.

[tinaj]

I also would like to know the answer to this as I am 52 and been diagnoised with MF for 14 months now and have as yet not taken anything other than Asprin as we all have.

I am going back to the hospital at the end of the month for my normal check up and for the results of a scan to see how my spleen and liver are doing. The last scan I had was 3 yrs ago after being told I had ET.

Hope we get some answers soon.

[tombs]

I was diagnosed with PMF early January 2009 and, once the diagnosis was confirmed, have been on ALPHA-INTERFERON injections ever since. I have the fatigue and white finger syndromes. I was taken off Interferon for a few weeks some months ago, in order to allow an increase in white blood cells. Other than that, I try to lead a normal life and am still working full-time, and the rest...!

[selkie in reply to tombs]

Tombs. I'm amazed you're working full-time. How do you manage your fatigue? may i ask, how old you are?

[selkie]

Tinaj. Thanks for sharing. I'm 10 years diagnosed, and in that time took aspirin. 2 years ago, following a major haemhorage (triggered by biopsy during endoscopy) i was put on Warfarin. but was advised (2nd + 3rd opinion!) to take Hydroxy given age and stroke risk. My own Haematologist has gone along with my wish to steer clear of the big drugs as long as poss. My haemaglobin is OK, white cells etc. Spleen is enlarged to 21cm and liver also enlarged. But I'm feeling good, love outdoor activities, enjoy my food, enjoy life! The one disconcerting thing, is the steadily falling platelets that suggests marrow failing now. Is next clinical visit end Oct. my ' now or never' test?

[tinaj in reply to selkie]

My platelets fell over two hundred during my last two visits. I was so shocked I forgot to ask how they fell that much even with me only taking asprin.

I'm trying to stay of the bigger drugs as long as I can as Luekemia runs in our family, even if they say that the drugs don't bring on this I still don't want to take any chances

[tombs]

Hi Selkie, I do find that if I keep myself busy, I am able to keep active. If we are out in the evening, I can cope for hours! However, if staying in and watching TV, say, then I fall asleep without any tiredness or warning! Or maybe that's just the TV...! I was 60 in May. I do hope you are coping with your condition - you appear to have a good sense of humour! May I wish you all the very best at your next appointment. Please let us know how you get on. We're a rare breed !

[Swede]

Hello,

I am taking Hydroxycarbamide since...2008. I was diagnosed late 2007. When I asked the Haematologist, what the future had for me, he told me that I was 'in it' for a lifetime and that I would always have to take medication.

Now, for other reasons I don't work full-time (I do occasionally) so I can work from home with administrative things,three days a week, if I want to. Lovely! When I can't sit up right for all the fatigue, I just have a little rest.

I refuse to sleep during daytime, as I think it destroys my night sleep.

:-))

[sjdard in reply to Swede]

Yes a nap during the day does destroy night sleep, but I just can't stop myself.

[selkie in reply to Swede]

Swede. You seem to have a way worked out for yourself. That's the main thing. It's such an individual thing, the experience of this condition!

For myself, like Sjdard, I have to stop, get into bed, and lie there, sleep or not!

If I go beyond my exhaustion, I get "jet-lagged", and don't sleep at all that night. I feel I pay the price for not listening to my body!

Out and about, I rest in the car, let the passenger seat down, I always have a pillow and sleeping-bag!

[golfbridgenut]

I'm 68, with MF having transformed from ET about 5 years ago. Platelets now normal but Hb rather low at 10-10.5. My haematologist (who I've been seeing about 15 years) advises that Hg would simply suppress Hb and counts further and hence I simply take Allopurinol to prevent gout. Do get tired and sleep poorly.

Had a minor stroke about 2 and a half years ago but this was prob caused by hypertension and A Fib. Hence also take BP meds and warfarin

[selkie]

golfbridgenut. Delighted to receive your response. Tha'ts exactly my Haematologist's view... platelets would be suppressed further! The primary reason (for taking Hydroxy), it seems to me, is as a safeguard against stroke. But doesn't Warfarin do that by thinning the blood? And are the statistics (stroke risk) different for the MPD community as opposed to the community at large?

I already experience gout, and take Alopurinol. I have no pain from it, simply stiff, crunchy right knee!

And like you, poor sleep. Still, I swim, walk, do the gardening, enjoy outdoor life.

[westlieght]

Hi am not on any drugs just asprin my HB falls to around 9.5 then i have blood transfusion brings me back to HB11.i work part time and need to rest if i can afternoons like you can have unsettled nights sleep .best wishes