I’ve been on HU for 7!years and I noticed after about 9 months I was getting very slightly breathless.
However, 7 years down the line I am extremely breathless . Walking from room to room I am slightly breathing heavy. Going upstairs I am very breathless and also just plain walking I get breathless.
I’ve had all sorts of tests. Chest X-ray. Respiratory tests. CT scan etc.
The results of my CT scan showed small portion of bronchiectasis from having pneumonia 26 years ago. Also very mild emphysema.
The respiratory Consultant I saw said that both conditions are very mild and according to the respiratory test results show that even having an inhaler won’t make any difference as the results after having the tests after puffing the inhaler there was virtually no change.
My Gp is still thinking it’s the HU causing this breathing problem but my haematologist says not…..
It doesn’t make sense to me that prior to taking HU I could walk miles and go to the gym 3 times a week.
Anyone had the same problem??
THANK YOU
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"Some people have had lung problems with this drug. Sometimes, this has been deadly. Call your doctor right away if you have signs of lung problems like shortness of breath or other trouble breathing, cough that is new or worse, or fever."
"Hydroxyurea can cause severe interstitial pneumonitis.[21] It can even occur after several years of initial treatment with hydroxyurea. If not diagnosed, drug-induced interstitial pneumonitis can lead to lung fibrosis and respiratory failure. The recommendation is to discontinue the drug."
I am not sure why a hematologist would say that HU would not cause dyspnea. This is well established. Assuming that your pulmonology assessment included screening for the more serious manifestations, then this would likely be an adverse effect that could be resolved. Suggest a consultation with a MPN Specialist who is more familiar with HU and its potential adverse effects. Here is a list.
You are correct that HU can also cause alopecia. It is another of the common adverse effects.
There certainly are other medications that can be used to treat Et. The other first-line treatment is PEGylated Interferon. Second line options include anagrelide and Jakafi. I think the approach recommended by Dr. Harrison is best, explaining the options to the patient and letting the patient decide.
It is important to understand that each of the options we have to treat MPNs have a risk/benefit profile. We each respond differently to each of these meds. I was unable to tolerate HU the last time I took it. I experienced toxicity even at vey low doses. I am now taking PEGylated Interferon. It is controlling the thombocytosis and the erythrocytosis. I have had no side effects at 45mcg/week. Not everyone is so fortunate. Some cannot tolerate PEG.
I do not blame you for being upset. It is time to advocate for yourself and the care you deserve. You can do this. Assertive patients receive higher quality care. Passive patients do not. It is time for the care you deserve.
Thank you so much for that hunter5582 .I just think with all the tests coming up with nothing that should make my breathing so bad it could be the HU actually causing it. Especially when the lung consultant has said inhalers won’t help!!!
Even people with serious COPD get help from inhalers.
I appreciate all the information you have given me - thank you. Rose
Hello again hunter5582 Claire Harrison talks about IFN…. What is that?
Also she says about having a specialist nurse?
Is that something that only Guy’s provide?
She also says about with PEG that you can have flu like symptoms for 2 weeks - does that mean for just two weeks after first injection or every injection?
Also about depression - is that common do you know?
I was put on HU when my platelets reached 550 - but I was 63 so that’s probably why
IFN is the abbreviation for Interferon. The two interferons used for MPNs are Pegasys (PEGylated Interferon alpha 2a) and Besremi (ropegylated interferon alpha 2b). Pegasys has been in common use for quite some time, but is still considered off-label for MPNs. Besremi is approved for PV, but is off-label for ET.
Given that your platelet levels are relatively low and if you have been asymptomatic then you are likely correct that the doc followed the age-based protocol for determining risk. The older protocol is age>60. Some protocols now use age>65. Some MPN specialists use a more individualized approach that does not consider age alone. My MPN Specialist told me "65 is the new 35." To wit, we all age differently.
One of the discussions to have is whether you want to engage in cytoreduction at all. You are already at a target platelet level recommended by many MPN Specialists, platelets<600. silvermpncenter.weill.corne...
In making this decision you have to weigh the risks/benefits of each of your choices. Aspirin-only is one of your choices. You have to make a risk determination based on your history of of thrombosis, hemorrhage, microvascular symptoms, age>60/65, constitutional symptoms (fatigue, headaches, pruritis, etc.) and cooccurring medical conditions. This s a detailed and highly individualized discussion you need to have with your hematology care team.
Most hematologists do not have the KSAs to provide optimal treatment for MPNs due to their rarity. It is very important to include a MPN Specialist on your care team. Many care teams use mid-tier providers (Specialist Nurses) to help provide the care. Provided the Specialist Nurse is part of a care team with MPN expertise, this can work well.
Regarding the potential side effects of the IFNs, flu-like symptoms and depression are known adverse effects. Like most adverse effects, most people will not get them but some will. Here is a bit of information on this.
We each present with a unique MPN profile. We have different needs. We each respond differently to each of the treatment options. You know you own body best. It is your goals, priorities, risk tolerance, and preference that should drive all treatment decisions. Having a MPN Specialist as part of your care team to consult, advise and educate you about the MPN is essential. We each have to also take responsibility to educate ourselves. This is the only way we can make good decision about our own care.
Here are a few more resources you may find helpful.
I too experience shortness of breath for over the past 1 1/2 years now ( nothing Covid related). I have completed a complete cardiac work up and almost completed a respiratory work up (one more test to go). So far EVERYTHING tested normal. I spoke with my hematologist had BMB to rule out myelofibrosis and PV. She said I was on too low a dose of Hydrea to have that cause shortness of breath but she has started to reduce that dose even further to see if it makes a difference. It is frustrating. I hope you find an answer soon♥️
I took 500mg every other day for 20 years and now am taking it only 3 x week. If my counts stay below 400 after doing this for two months, she will try dropping me to twice a week. I also have Factor V Leiden deficiency and a history of blood clots hence the cutoff of 400 for my platelets.
I experienced some level of shortness of breath while on HU - nothing serious but enough so that I noticed I could not do cardiovascular exercise to the same intensity level prior to HU. My MPN specialist stated that this is a potential side effect of the drug. As a life long asthma sufferer as well (thank goodness under complete control), this was one of the side effects for which I was very aware.
I've sent my consultant an email so she knows what's happening.I cannot tolerate any higher dose than 500mg of Hydroxy due to 2 other side effects, vertigo and Eurythemia Nodosum. Blobs and lumps on the legs and can be very painful.
HiI am getting extremely concerned how bad my breathing is getting. I am not able to walk fast anymore. Go upstairs and out of breath. Walking on inclines is very hard and hoovering etc takes it out of me due to being so breathless.
Can you let me know what your consultant says!!
I don’t think they want to admit vits down to the Hydroxycarbamide.
I’ve had chest X-ray. Respiratory test. Lung function test. CT scans .
Nothing is showing up as to why I am so breathless now.
It started mildly about 9 months after I started HU.
Ct scans show very mild emphysema but consultant has said not enough to explain any breathing problems at all
Morning. I've just had a phone call from Haemo nurse and I have to go for another blood test tomorrow. I don't think it's going to show anything as I think it's just one of those problems for some of us on this drug but we'll see. Stay 😃.
Platelets slightly elevated so another blood test in 4 weeks. Nothing shows about breathlessness but then we know what's causing it.!!!! It's a side effect. Hope alls well😁
Yes. Although it's a conversation via a haemo nurse. She knows that I know it's yet another side effect but I will continue on this lowest dose as the other side effects are not worth it. Strangely I haven't been that breathless today but we'll keep that between us🤣🤣😁.🦹♀️
I was diagnosed with ET 5 years ago, and put on hydroxy, after 6 months I was experiencing extreme fatigue , after about 3 months I was changed to anagrelide, but the fatigue continued, and the my GP found I had AF ( which is a known side effect of Hydroxy ) so have been on cardio drugs ever since, and had several cardioversions, but still had some fatigue episodes. After another BMB ( think was instigated by my thorough cardiologist ) was re-diagnosed with MF, so changed to Jakavi Ruxolitinib, platelets keep to about 500, but did have an episode of shingles symptoms ( known side effect ) still got rash but controlled with Aloe Vera gel. Also had pneumonia but not serious. However after some Dr Google searches realised magnesium deficiency ( not easily diagnosed ) could be due to the medications, so have been taking magnesium supplements, and fatigue has been much less.
November 2021
AF still under control, and can do some outside work for about 2 ½ hours, ( gardening and maintenance ) rest for 2 hours then can do some more. Don’t get breathless unless trying to do too much. Now had 3 Covid jabs (2 Astra and 1 Phizer ) no side effects.
Take a jar of my own honey to consultations, never have any problems getting appointments, and always remembered by name. A little appreciation works wonders.
I have been suffering from breathlessness for years, had lots of tests nothing concerning. It has got worse I switched from HU to interferon and haven't really noticed a difference. Walking and talking not a good idea. Has no still saying breathlessness not related to ST but she says fatigue isn't either.
Yes I was diagnosed with ET a year ago. After being on hydroxy a few weeks I started getting breathless but then was told I was anaemic. Been taking ferrous sulphate twice a day for 6 months now and hope to be taken off it after blood test this week as breathlessness gone and so much better in myself.
I noticed SoB 4 months after ET diagnosis and starting HU 8yrs ago. It’s gradually worsened since then. Lungs all good on full range of tests and scans 2 years ago. Following ECG treadmill test it seems problem is with heart but angiogram and echo scan were also clear.
Cardiac microvascular dysfunction (it affects post menopausal women more than men apparently) or coronary artery spasm have been suggested. These are tricky to diagnose so am now waiting for appointment at a specialist cardiology unit having been recently referred there by the MPN team. As they are in the same hospital trust there should be good communication between the two departments.
Initially I was convinced HU was the SoB cause but who knows. Hopefully I’ll learn more in the months to come.
Thanks for your reply.I’ve had chest X-ray. Respiratory tests. Lung function test and CT scan. Waiting on results from echo on heart but the lady doing it said she didn’t see a problem.
She I did the lung function blowing test there was only minimal improvement after having inhaler. Lung consultant said inhalers wouldn’t help as do little improvement.
Can you let me know how you get on please. You can message me if you prefer.
I moved to a MPN specialist team in 2018. I say team as I don’t always see or speak to the same specialist there but that’s fine with me. I feel safe in their care.
Yes I will update on what I find out but with lengthy waiting lists it might take a while.
Hi! The easiest way to find out is to change to another med, like Anagrelide, which apparently has the lightest symptoms of all 3 meds for our illness.
After hearing what Hunter said, he’s well informed and to be trusted, I would suggest another hem. Gather up all your information and find someone that will listen and take you seriously. Quality of life is everything dear!
Thank you. I’ll take a look at Angrelade. I thought I’d seen somewhere it causes palpitations which would worry me. Was it here that hunter5582 replied?
I can only take Anagrelide. It caused me palpitations. I learned that, taking the pills separately reduced or eliminated the heart problems. Since I started taking Acetyl L-Carnitine 3x500mg daily (9am, 1pm and 5pm) in April, those have all disappeared. I have much more energy and my brain is better! It’s actually the one med, with the least amount of side effects and overall effects to the body, because it target the thrombocytes directly. Doctors don’t like to prescribe it often, since it is quite expensive compared to HU. I take 4 capsules a day. They have a half life of 1.3 hours, Therefore, I take my second one after 3 hours and then the 3rd and fourth at 18:00 and 21:00. The palpitations were usually about an hour after taking the capsule. If taken with food, the strong heart beat was more regular. What I figured out is that the Anagrelid blocks the hearts receptors from receiving messages from the vagus nerve, which control our heart rate variability. Ie. After walking up stairs, it took 4-5 for my heart to slow down. All that has stopped now. 😁😁
I have only recently started taking Hydroxy but I seem to recall being told by the consultant that breathlessness is a possible side effect. I experience it slightly and as I’ve had a recent CT scan and ecg, I hope to get the results soon. As I’m new to this, how do I get results before my next appt on 7th December? I have a number and email for the nurse but she rarely responds to emails and I thought calls were for emergencies! I think I need to be more assertive!
In Austria, we are able to get all results personally either the same day or the next, before we go back to the doctor. We can also get them through internet. We sign, get a code and then we can download it or also send it to another doctor. That way we don’t lose time in therapy and we are freer to choose our doctors or even send the results to other countries. Completely independent.
In your case. I’d go there in person and get them and next time make arrangement to be able to do that. Dec 7th is a long time. I’d go nuts!
You should be well informed and advocate for yourself. “Time is health”
I don’t think you can actually see results oh CT scan or ecg or x ray before seeing the consultant.I certainly have never been able to see them
Just have to wait to see what your consultant says
Can only echo those who have posted about breathlessness. When I brought it to the attention of my haematologist he said that, as my haemoglobin levels were fine, the hydroxycarbamide wasn’t to blame. There was no mention at all about any potential lung damage the drug could cause.
It’s the lungs that get damaged . Haemaglobin levels might be great but they tell you nothing about what’s happening to your lungs.It’s shocking that I’ve never been told about this until I told me haematologist that I’m really out of breath now. Only then did he tell me that HU can cause lung problems
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