HU side effects

[jodary]

Just wondering from anyone who has experienced side effects on HU if they appear fairly quickly or take a while to show . If you start on a low dose would it take a while to build up in ur body or would they happen straight away.

[charl17]

HU relieved my pmf symptons in a few weeks. It made me short of breath and a little dopey almost immediately. After 4 years I developed an ankle ulcer that would not heal and I had the general sense that my skin was becoming fragile. Some people go for decades on HU with no problems. As for myself, I wish I had been offered Pegasys in 2014 when I was diagnosed.

[yippinurse]

After about 6months, my numbers were perfect but I felt like crap. Inability to sleep, massive brain fog and night sweats and just general malaise. Was put on jakafi which side effects were almost immediate and after 4 months of hell and 25lb weight gain, I was put on pegasys.

[MCW22]

After my second capsule I developed extreme intimate soreness and slight nausea. Both of these stopped after several weeks and now no side effects at all, even after an increase in dose. Bloods mostly within range now. P V jack 2+

Carol.

[JackLina]

Within a couple of weeks I had lost the use of my thumbs, which become so painful and swollen I couldn't use them. My entire hands were unable to carry out normal everyday tasks such as turn on a gas fire, press anything, grip or anything really that you would normally use hands for!!! I was in such pain over my whole body, feeling nauseas, head-achey and so fatigued all the time I could not keep my eyes open. At 3 weeks I told the haema my symptoms and he said he would prescribe more. I questioned his intentions with my horrendous side effects and stopped taking any.

After 3 weeks with no medication, I returned to the haema who agreed I could go on Pegasys. That was June 2018 and the disability of my thumbs returned just last month. It was gradual but all of a sudden I realised they were back. my hands are normal now. I was told continually that this was nothing to do with HU but isn't it strange I never had it before and now it's gone?

Of course, this is my experience and there is no reason that you should be affected similarly. ATB. x

[Sallush]

Slight nausea to begin with which went really quickly. Now after a few years on HU, the only side effect is that my finger nails break easily. They were fairly tough before.

[jodary]

I am struggling a bit Upset tummy but worse of all strange numbness left side of face , well I say numbness it feels numb but it still has feeling. Also ear infection that won't go away.Been on it 8 weeks on low dose 3x a week. I know before I go that Haem wont accept it as being caused by HU. As I had no side effects first few weeks .

[hunter5582]

While many people can tolerate HU with few side effects not all can. HU will reduce hematopoiesis and sanitize your blood cell numbers, but it is a Band-Aid approach. It does nothing to treat the underlying disease process. This approach works for some but not others. Here are some things to know. HU interferes with DNA activity throughout your body - it slows it down. In so doing, it can break allele strands and interfere with the DNA self-repair process. This makes HU teratogenic - while on HU people must not get pregnant (men = 1 year post, women = 6 months post discontinue). Sexually active couples should use condoms for sex as HU passes into semen and vaginal secretions and your partner will be exposed. Women of child-bearing years should not even handle the bottle of HU without gloves when not on the med. This is important in that HU is also a mutagen and can cause some secondary cancers (particularly skin). It is suspected to be leukemogenic as well, but this is controversial and unclear. While on HU, you must not take any live vaccines and need to be careful about infections as it can affect your immune system. One of the most common side effects people experience related to this is mouth ulcers. Soe also experience thrush. HU can cause some intestinal issues, including constipation and flatulence due to its compromise of the intestinal endothelium. More significantly, it can also compromise vascular endothelium, resulting is vascular ulcers and gangrene (not common). For men, HU can cause hypogonadism (oligospermia/azoospermia) and there is some recent research to indicate it may decrease testosterone as well (this finding not in clinical practice yet).

This all sounds pretty daunting, but it is important to understand that all of the chemotherapies come with benefits and risks. We each respond differently to our MPN and to its treatments. One size does not fit all and the "standard protocol" does not fit all patients. HU works for many people and they benefit without significant problems. I was not one of those. Even at low doses, I had toxic effects and had to discontinue despite being Age>60 PV-JAK2+. It took some of the side effects about 2 months to subside Upost-d/c HU. HU caused leukoplakia for me, which has improved, but is still present. However, just because HU is not the best choice for me, it does not mean it would not work fine for someone else. Most people who do experience intolerance recover and do fine when they d/c the HU.

I hope this helps without unduly alarming you. Sorting all of this out is stressful and complicated. Many of the hematologists we work with see only a small handful of MPN cases in their entire careers and are not as well versed in the use of these meds as we would all hope. It can be very helpful to find and MPN specialist to consult with you and your regular hematologist to coordinate better treatment. Here is a list of patient-recommended MPN expert docs mpnforum.com/list-hem./ . All the best to you.

[jodary in reply to hunter5582]

I do find that very alarming ! As a married woman none of this was mentioned to me.

[kp27kathleen in reply to hunter5582]

What are you taking now?

[jodary in reply to kp27kathleen]

Started on HU 8 weeks ago only 3 a week . Was ok to start then a few weeks ago got the first ear infection Ive ever had and its not clearing up Have diarrhea from the antibiotics and am stll suffering with earache and pressure Had some numbness in face and had to have mri scan bur have now found some others on here have had this Support nurse says any side effects show when you first start it but I wondered if it was a build up

[hunter5582 in reply to kp27kathleen]

Well my situation currently is a bit more complicated. For 30 years+ I was on aspirin only for ET. I had spent about a year on hydroxyurea when first diagnosed until the tx protocol changed for low-risk cases like mine. I never experienced any thrombosis at any point. About six years ago, I experienced a reactive thrombocytosis that sent my platelets up close to 1 million due to an intestinal issue. Went back onto HU for a year at this time (along with aspirin) until I stabilized and d/c the HU. No trouble with side effects either of the first two times. At this time, it was determined that I was JAK2+. Unfortunately, the hematologist I was seeing at that time missed the fact that my MPN had progressed to polycythemia. I went back to aspirin only and had five years of no issues anyway. In January 2018 I had a surgery (Green Laser PVP) that triggered another episode of significant reactive thrombocytosis. A few months following this surgery, I was also diagnosed with paroxysmal atrial tachycardia. This required surgery (catheter ablation) in June of 2018. I had started back on HU in March and platelet leves were OK for the heart surgery, which did cause some mild reactive thrombocytosis. It was at this point that my hematologist realized that he had missed the diagnosis and that I had progressed to PV. That is when I started on a course of phlebotomies in July 2018. Ultimately, the phlebotomies were very effective in controlling the erythrocytosis. Phlebotomy did not effect thrombocytosis much one way of the other. I was on a higher doses of HU )1000mg/even / 500 mg odd days at this point. This is when I did start experiencing signs of HU toxicity. I started getting mouth ulcers, developed a case of thrush,, and ultimately developed leukoplakia (damage to lining of tongue). I also experienced signs of compromised intestinal endothelium (constipation and flatulence). Though we titrated me down to 500mg 5 of 7 days, the side effects continued.

As I grew more concerned, I decided to consult a true MPN Specialist - who happens to be the Director of the MPN Clinic at Johns Hopkins Hospital. After he reviewed my case and looked at my individual profile, be advised me that the risks of HU were not worth the benefits for me. He does not favor merely "sanitizing" the blood numbers and favors looking at the symptoms of each MPN patient and their unique profile. My JAK2 Mutant Allele Burden is only 25%, which indicates a milder course of the illness. He also advised me to d/c the aspirin (not a conventional recommendation) saying my risk for a bleed was higher than my risk for thrombosis. NOTE: My von Willebrand Factors have a tendency to drop when my platelets get up around 800K. I do not appear to have true Acquired von Willebrand Disease based on an extensive evaluation, but it is something I need to pay attention to. The MPN Specialist rather prophetically stated - you do not want to have a brain bleed.

A couple of weeks after the MPN consult. I received a neurological MRI based on my hx of polycythemia and unrelated Neurofibromatosis type 1. To everyone's surprise, I was diagnosed with a hemorrhagic multi-cystic brain tumor in the occipital lobe. It was surrounded by enough edema that there was concern that it could be a higher-grade tumor. After many subsequent tests and evaluations I decided to have the tumor removed. Two weeks before the surgery date, the hematologist called to say "we have been over-phlebotomizing you" and I was so iron deficient that ferritin could net even be measured and iron saturation was only 3%. Decided to move on the surgery anyway after a brief course of iron supplements.

I had the tumor resection (craniotomy - open brain procedure) last week on June 17. The surgery went well and I was discharged on Wednesday June 19. Pretty amazing! From a neurological perspective, recovery is going as expected and looks good. From a hematology perspective, I of course am back in reactive thrombocytosis with platelets at 829K. The neurologist and the hematologist are both unclear what the best choices are as it is a balancing act - which is worse - risk a clot or risk a brain bleed post-surgery. This is one of those times when there is not a clear answer and you just have to use your best judgment and hope for the best. Given my hx, I am opting to NOT use aspirin at this point. I am resuming some supplements (e.g. Turmeric) that help with inflammation and have mild blood thinning effects. This is ultimately my decision and as much as I respect the docs, they do not always have clear answers for you.

To conclude this long saga - we are each different in how our MPNs present. Not only is the disease process of the MPN potentially unique, but we have a combination of both related and unrelated cooccurring medical conditions. We each react differently to medications and other treatment options and one size does not fit all. Indeed, the "standard protocol" may end up being the wrong approach for any one case. I am age>60 PV-JAK2+. The most common protocol in most of the literature is for Hydroxyurea + aspirin + phlebotomy for me. However, this protocol is not a good choice for my case. I have HU intolerance and should not (will not) take it. The aspirin is debatable, but is clearly contraindicated while my brain is healing from surgery. I will resume the phlebotomies when my iron levels improve and hemoglobin gets back up to 14.0. (The phlebotomies have had the wonderful benefit of decreasing my blood pressure - went from Stage 1 hypertension to normal resting BP). This decreases all sorts of hypertension related problems, including with the PV. I am going to work with my docs to closely monitor the blood levels and how my PV symptoms are emerging. I am working to get all of these specialists and my PCP to actually communicate with each other regarding my care. I have found that I have to be very directive with this communication or it does not happen.

I think that being assertive sand directive are ultimately the most important things to do. You have to take responsibility for your own care and be assertive in getting your needs and concerns addressed. The MPNs are such rare disorders, that many docs just do not have the level of expertise we would hope for. The good news is that there is a lot of promising research and emerging treatment strategies that will really benefit us. If you want effective care, however, you must educate yourself about MNs and their treatment. You also have to learn to be a tireless advocate for yourself in systems of care that sometimes seem more geared to preventing effective care than providing it. Forums like this are an invaluable resource as we struggle to figure this all out. Sharing what we have learned and experienced helps all of us.

Please hang in there and get all of your questions answered. Short of a medical emergency, you have plenty of time to consider and decide.

For me, I will not go back on HU. If I do need chemotherapy again, I will be considering Jakafi or peg-interferon for the PV I won't decide anything until I know what kind of tumor they took out of my brain (still waiting on pathology for that). Hopefully, I won't need any chemo for the tumor, but it is a possibility. I am going to take my time and carefully consider all options.

All the best to you on your journey.

[kp27kathleen in reply to hunter5582]

Thank you so much for taking the time to tell your story. You have made me realize I have something to say about my treatment. I was definitely lacking in that department. I will make an appt with her after my blood draw next week. My dermatologist suggested Anagrelide bur she said she doesn't like the drug. Well thanks again and best wishes to you. You've been thru a lot.

[Cja1956 in reply to hunter5582]

Hunter, I had no idea you’ve had do many issues. Thanks for sharing your story and my thoughts are with you that your results from your brain tumor come out okay.

[hunter5582]

Sadly all too common to not be given all of the information. The truth is that not all of the docs are up on all of this and just rely on treatment protocols without consideration of the individual patient's needs and wishes. Not to say that HU is not a good choice for some, just not for all.

[Pat032018 in reply to hunter5582]

Thanks for all the info and sharing your experience. I actually learned quite a lot from reading the stuff you write. Take care

[hunter5582 in reply to Pat032018]

You are certainly welcome. That is what this forum is for. I find it very helpful to capture my thinking in these posts. I always hope it helps someone else, bit it always helps me to review what I have learned and to think about how it applies to my own ongoing journey with these health issues. I have learned a lot from our fellow MPNers and we all benefit from getting support from people who understand what we are experiencing. All the best to all of you out there.

[kp27kathleen]

I have been on a low dose for 5 yrs. In the past 18 months I have developed MANY skin cancers, falling hair, mouth sores and of course fatigue. I am going to try to get it changed. My platelets are in the 350 range.

[kp27kathleen]

What could my option be if not HU??

[jodary in reply to kp27kathleen]

I don't know but I am becoming increasingly uneasy about taking it x

[Mufftreacs]

I have been on HU for 13 years. The. Only side effects I had was mouth ulcers, which appeared with great regularity. I learnt to live with those.

Recently, I developed an ankle ulcer and my skin and hair became very thin.

My ulcer would not heal so my consultant changed me to Anagrelide.

HU has been great for me for many years so don’t worry unless you get unbearable side effects.

Good luck.

Kate

[Angelinagaffer]

Your be ok, it will help you, don't worry and fret, you will be ok. Ive been on it for 4 yrs. Keep active and drink lots of water. It is scary at first and if you don't get on with it there are other alternatives, plus new research suggests through the success of cell therapy in lymphatic cancers they feel it will be of help to MPN s. So in the not so distant future we may just need our blood taken and our own cells put back and our cells will sort us out and make us well.😇 It was on the news last week. Best Wishes Angelina.

[mjn500]

I have just started it two weeks ago - 500mg daily. For the first 10 days I had a bit of nausea, slight stomach upset and a few episodes of extreme sleepiness (not all at once).

Then all those stopped and I felt absolutely fine again. My dosage has just been upped slightly - 1000mg at weekends - so we'll see how that goes.

Mel.

[jodary in reply to mjn500]

I envy you. I just want to get my counts down and get on with life. Ive never had an ear infection in my life.And its been ongoing for 3 weeks now. Antibiotics have really upset my system and I feel miserable x