My platelets just hit 1,000,000 with CALR identified. Over the last 2 weeks I’ve felt light headed at times and tired. Could these be symptoms?
I was prescribed HU today but I’m waiting until after I see a specialist at the end of the month. Just seeing the pills has me concerned about what life is going to be like once I start taking HU.
Can anyone share their experiences taking HU?
Is there an adjustment period? Should I plan time off of work for the first week?
Thanks for any insight!!
Hi MJL
Firstly, with regards to taking the HU, I think you are being very sensible in at least waiting until you see the MPN Specialist. I say this in response to the information that you have provided in your previous post ie; CalR + your young age and excellent health and a platelet count below 1500.
If you do have to start treatment (and I really wonder why), it would be preferable if your Specialist could prescribe Pegasys.
In answer to your question regards HU. I have been on HU for nearly three years. It works well for me at a very low dose (500mg daily Monday to Friday only). I have been on the same dose throughout, remain stable, and suffer no side effects whatsoever. Initially, I did have the odd mouth ulcer in the first couple of weeks of treatment, but really that’s all. I am very grateful that HU lowers my thrombotic risk and I feel reassured by that.
Significantly, I am over 60 years of age and ET with the Jak2 mutation, which puts me in the high risk group, regardless of my good health. Unless you have a heavy symptom burden or have suffered previous thrombotic events you should be considered ‘low risk’ surely?
Good luck with your Consultation. Keep us updated.
Mary x
Hi
If you’ve just been diagnosed then it can be a really disorientating time and the symptoms you describe will be familiar to many on this Forum - even if you haven’t experienced any symptoms before. A new diagnosis can really mess with your head. That spacey feeling and the fatigue can be a physical manifestation of all of that. Fatigue and lightheadedness can also be down to things like anaemia and low iron which can go with the MPN territory.
Although the higher your platelet count the more likely you are to experience symptoms it doesn’t always work that way. If you are new to this, the best thing you can do is to get well informed with information you can trust. For that take a look at the MPN Voice website.
Although your platelet count is well above normal, if you are under 60 and don’t have any other compromising health issues it’s perfectly usual just to continue on aspirin until your platelets start hitting 1500. So if that is your situation, like Mary, I’d suggest you might want to wait until you see your MPN specialist before you commence drug treatment (you don’t say who prescribed the drugs).
As for HU it’s not the monster it’s often made out to be (believe me I was VERY reluctant to start treatment!). It’s served me very well and my numbers tumbled (from 1700 less than a year ago to 380). And I feel much better. Like the overwhelming majority of people I had no side effects. You need to watch that you cover up in the sun but that’s about it.
Let us know how you get on.
Hi
I would say that talk it over with your specialist first. Everyone reacts different to HU.
I am Calr and was given HU when my platelets hit 1200 just a bit higher than yours. I was started on 2 a day unfortunately within a couple of days I started to have side affects. Fatigue itching headaches and after a couple of weeks breathing issues. My specialist hoped that the side affects would go with time they did not. We tried lowered dose same issue. But the main thing was it brought my white cells down so I had the come off it.
I did not have a good experience on HU and I could not work due to side affects but there are plenty of people who are fine with it. I was just one who HU did not agree with.
When you start it can you talk to your work and.make them aware and just take it day by day. You could be fine.
I was put on Anagralide and have no side affects and platelets are now within normal range. But anagralide does not work for everyone.
Unfortunately we all have to try Hu etc and find the right fit.
Hope you find the right fit for you
Goodness working with platelets at that level! I think once they start lowering you will feel a lot better. Yes hydroxi does make you tired but I’m sure you will feel the benifit for taking them.
( I’m et Calr)
Mhose61 has given you very good information. On the other hand i’d want to see my platelets drop ASAP so I think I would take them. The specialist could change your meds if need be.
It’s a difficult one I’m afraid. How about phoning the specialist secretary and asking the question to be forwarded to your specialist?
I was diagnosed with MF (with high blood counts) 5 years ago. HU made me feel better and I tolerated it well for 4 years. I am now on Pegasys. MPN is a rare disease that follows a highly individualized course and people have highly individualized responses to therapies. You are planning to see a specialist. I would try to communicate with his staff to answer the question of whether you should start HU before you see him. If your doctor is worried about clots short term I would start the HU. Otherwise I would wait for the specialist.
Think of it this way. You are heading out on a long journey through an unexplored continent. Who will be your companion on this journey? Who do you trust? Who can you talk openly with?
I agree with Wyebird. When I was first diagnosed with ET Jak2 positive 11 years ago, my platelets were only 600,000. My doctor put me on hydroxy and anagrelide right away. My platelets went down to the 300,000s. I stopped the medication on my own, thinking I was cured. I went off my meds and I ended up soon after in the hospital for 3 days with a blood clot in my spleen (platelets at 800,000). Once you get your platelets down, your doctor can adjust your medication to control side effects.
Good luck.
Cindy
I think you would be wise to talk to a MPN specialist before starting the HU. The thinking on treatment has evolved in the last several years and the use of HU is not as aggressive as it once was. While many people tolerate it with only minor side effects, HU is therapeutically weak and the doc has to keep you on the edge of toxicity for it to be fully effective. Toxic effects include; compromised immune system (mouth ulcers, thrush, other infections), compromised intestinal endothelium (constipation, flatulence, other gastro issues), and other assorted issues. HU is also mutagenic (can make the MPN worse), carcinogenic (e.g. skin cancer risk), and teratogenic (causes birth defects). Women of child bearing years are not supposed to even handle the HU bottle without wearing gloves. All that said, it does really work for some people. The risk-benefit ratio if unique to each person and has to be evaluated by a doc who really understands MPNs. I recently was seen by an MPN specialist who took me off HU as it turns out I am HU intolerant and the risk-benefit was not in my favor. Even with hematologists, not all are conversant in treating MPNs and are not up-to-date on current and emerging treatment protocols. All the best on your journey.
Thanks to everyone.
Oddly enough my doctor called me shortly after posting. He told me to start HU immediately because my blood showed traits of Von Willebrand disease. I started HU last night with a second dose this morning. So far I feel the same so I guess I’ll see where it goes from here.
I had similar symptoms. My iron count was low for since Nov 2013. But after a full blood count in August 2018 I was referred to a Hemotoligist in October 2018. Was told I had Et after many test I was diagnosed with CAL-R I November 2018. I was light headed one day I actually collapsed in Street. My daughter found a cab office and he took me home. I went to bed slept but then was fine. I had small bruises on under my ribs but ignored them thought they would fade. But they are still there. I knew something was wrong. But dismissed it. I was in was in denial I will be fine. Do you know if you fall you can have a hemotoma. So be careful.
I have been on HU for 3 months I take 500mg (1) pill per day and I’m side effect free doesn’t do anything for me but lower my platelets. You should be ok. Sometimes our minds can create side effects because of what we read I Guess in the beginning first few days felt little funny but I think it was all me. Good luck
Starting HU
Pegasus, Hu and Iron 
ET & HU
Did HU reduce your headaches? 
How long can you take HU?? 
