I have ET and have been taking 9 tablets a week for most of the last 18 months. My platelets have now been reduced to 390 from 695 at diagnosis. I hate the hair loss situation and asked my haematologist if reducing the tablets might help reduce the hair loss but he said he thought it wouldn’t. Any thoughts on this? And why are some folk allowed to have the platelet aim at no more than 600 rather than 400? Im also concerned about all the blood counts being reduced by 9 tablets a week. I am a fit 71 year old only other issue is high cholesterol controlled perfectly with statins. I have the JAK 2 mutation.
Thank you Irene
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Na56
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I am 79 with JAK2. When I was younger I had thick hair. I noticed over recent years my hair was getting thinner. My platelets had been going up slowly for about four years before I was sent to a hematologist. I did not see additional hair loss after taking Hydroxyurea.
I was very interested in your comment about why some people are not treated unless over 600. My doctor initially said my goal was 450 or less. Now she says she would like to get me below 400.
If your blood counts are going down also you might want to consider a second opinion from a MPN specialist.
I am 52 platelets rock around 600 for the last 13 years and still on asprin they keep mentioning hydroxy but I won’t take it as I don’t want symptoms.
There is a lady similar to you who is your age and eating the best diet and living her best life … anti inflammatory diet she’s on Facebook groups ET etc .. she keeps fit too
Hi I am 64 and and taking 1000mg x5 days and 500mg x2 days a week for the past 4 years after platelet reach 1300. Count is now steady 345. I have noticed my hair is getting thinner, I have been recommended to use a thickening shampoo. Going to give Pantene menopause one a go. This might be worth trying for you also.
I am in same boat has you I am a fit 72 yr old I am on 9 tabs a week my platelets 350 in May ,but in August my count was 350 and my hematocrit a little low ,they reduced me to 7 tablets a week just had a check up 6 weeks later last week my platelets were 400 and hematocrit lower again and I am now on 5 tablets a week another appointment due in 6 weeks , my haematologist likes the numbers under 400 my hair comes out but not sure if strands are normal daily loss or I am losing more will keep a days loss and ask my hairdresser next week it may look more due to length hope this helps I am ET with JAK 2 mutation
It’s interesting to hear that your tablets are being reduced. The dose I’m on has really decreased my white blood cells but so far my haematologist seems happy about that. Not sure that I am.
All my other bloods are good ,but hematocric ,my haematologist is talking about changing my meds of no improvement with the drop in dose I have been on hydroxycarbamide for 2yrs 4 mth so waiting till 8th oct hope all goes well for you sheila
While side effects of hydroxycarbamide are dose dependant, a small dose reduction may not make much difference in the impact it is having on your hair.
Regarding your question about setting a numeric target for platelet level, different doctors use different approaches. It is worth noting that there is an emerging consensus that there is no particular value to having platelet levels "normal" since the number of platelets does not correlate with risk of thrombosis. Some MPN experts now consider that it is the delta (degree of change) that may matter the most, Some do use 600 silvermpncenter.weill.corne... when a numeric target is used, while others may choose a different number. Some individualize the goal based on the patient's unique MPN profile. Note that symptom control and side effects are just as important to consider as risk of thrombosis.
It is up to you to decide what your treatment goals should be. Do you believe that a numeric platelet target is indicated for your case? What evidence is there that a specific numeric PLT target is indicated? What are all of your options to reduce risk of thrombosis? What other symptom control goals do you want to set? What is your risk tolerance? What are you willing to risk or tolerate to achieve the goals you wish to set? Ultimately, it is your treatment preferences that need to drive all of the treatment decisions you make.
Thank you very much for your reply. You have given me lots to consider. May I ask another question regarding pegasys interferon. In the 18 months I’ve been taking hydroxycarbemide my white blood count has decreased from 7.2 at diagnosis to 4.9 three months ago. My haematologist said that I’m not immune deficient but I’m a bit concerned about the decrease. I keep thinking about a change to interferon. Does it bring down all blood counts as well as platelets?
Most cytoreductive medication will reduce counts in multiple blood cell lines, Pegasys included. I took PEG then Besremi. My WBCs hover just above and below the bottom of the reference range (3.98). It is actually the specific leukocyte numbers that matter more, particularly neutrophils and lymphocytes. I am mildly lymphopenic and borderline neutropenic. This is not a concern as LYMPH and NEUT are still adequate for an immune response despite the lower numbers.
Considering a change to one of the interferons is reasonable, but should be based on your treatment goals and risk tolerance. I would expect that you would see some level of depressed WBCs on IFNs too. Perhaps the biggest difference would actually be in the risks/adverse effects. Suggest that you compare HU and PEG and see what you prefer.
I am also 71, JAK-2+ and fit. I was on Hydroxyurea 500/day for 6 months. I hated the cutaneous effects - dry skin, dry/brittle hair, mouth ulcers, skin cancer risk, bleeding gums, hair fell out the first month — even though it brought my numbers into normal. I switched to Pegasys 6 months ago and my hair, skin and gums are back to normal. I feel normal on Peg, but to be honest it hasn’t yet worked to control my numbers, even though we’ve been increasing the dose. I’m increasing to Peg 180 this week and sure hope it kicks in soon!!
My doctor is already discussing the possibility of switching back to HU … but I don’t want to!
Hi It’s pleasing to hear your side effects are much better. A lot of people on this site say it can take a long time for Peg to work. Isn’t your haematologist thinking that way.Please let me know how things go for you. Best wishes Irene
hi minify. I am 72 Jak2 positive and after switching to pegasys from hydroxy, it took me a good nine or 10 months until I saw any reduction in platelet counts, and in fact they went up during that time. It can take a long time with Pegasys, but mine are finally going down and I absolutely love feeling more like myself with pegasys. I wish you the very best.!
That’s interesting. Do you use it overnight and wash your hair in the morning? Any side effects and did your haematologist approve it? Has your hair been restored to pre medication condition? Sorry for so many questions but I’m desperate to improve my hair loss. Thank you Irene
Yes it’s just a topical application to the scalp. Leave it overnight and shower in the morning. Sometimes it is a little itchy but that’s about the only side effect. I googled contra-indications but found none so went ahead. No reactions on blood results. I note that some people notice a change in quality of hair some saying it’s coarser than before and some have noted colour changes. I haven’t noticed any change. Paul
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HAIR LOSS ON HU
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