I have been on hydroxycarbamide for nearly 9 years with no serious problems, but now I am getting slight breathlessness. I was surprised to read that this medicine can cause interstitial lung disease such as pulmonary fibrosis. I don’t remember it being mentioned on the forum. Of course some diseases with stop you from communicating freely. Any comments?
Jumbo4
The possibility that HU can cause interstitial lung disease or pulmonary fibrosis is well reported in the literature. Others on the forum have experienced this adverse effect. While not common, this is a very serious adverse effect that requires intervention when it occurs.
"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." ncbi.nlm.nih.gov/books/NBK5....
It is important to note that dyspnea (breathlessness) can occur in the absence of the more serious impacts on the lungs. When this adverse effect is apparent, a prompt and thorough assessment is indicated. Suggest that you consult your MPN care team with this concern. Assessment may require consultation with a pulmonologist and imaging.
Wishing you all the best moving forward.
hi Hunter
Are you aware of a connection between Pegasus and interstitial lung disease? I wasn’t aware of the link with hydroxy.
My mother had interstitial lung disease so I am very wary. I’ve been on hydroxy for three years and it’s been working well with no side effects other than increased skin cancer lesions but the ILD is a worry.
Thanks ….
While pulmonary adverse effects on pegasys are rare, they can occur. These adverse effects can include interstitial pneumonitis. I have not looked at the statistics comparing the frequency of pulmonary issues with HU vs PEG. Not sure what to advise in that regard. I suspect the risk on HU is higher, but I do not know that to be true. Suggest consulting with a MPN Specialist and/or a pharmacist for a comparison of pulmonary risk.
It would be very reasonable to consider a switch from HU to PEG is your are having issues with skin cancers. PEG is better in that regard. That is not to say that PEG is without its own list of potential adverse effects. This is true for all of our choices. Given that you are having significant issues with HU toxicity, switching to something else may make the most sense. This is something to discuss with a MPN Specialist. If you do not have a MPN Specialist on your care team, this would be a good time to seek a second opinion. mpnforum.com/list-hem./
All the best.
I noticed shortness of breath soon after starting Hydroxy 10+ years ago and it was dismissed casually by my then haematology clinic as unrelated to my MPN or Hydroxy.
A while later I changed to a MPN specialist who said problem will be heart or lung and testing then determined lungs were great but found a heart problem. I wasn’t expecting that.
The shortness of breath was actually a mild angina symptom which with time became more recognisable as angina. Neither haematology, respiratory or cardiology specialists linked my heart problem to either the MPN or Hydroxy and it was likely down to collecting up yet another condition that comes with time.
Medication controls the angina but my running days are over and that’s now as much down to the latest finding of osteoarthritis which was a bit of a shocker too!
You need to mention your shortness of breath symptom at your next haematology appointment and also to your GP. If I’ve any regrets it’s that I presumed the Hydroxy or MPN was causing my shortness of breath. Had I gone to the GP first I believe I would have started the heart and lung testing process much sooner. There will be a reason for your symptoms but not necessarily MPN or Hydroxy related.
Thank you for this thought - provoking answer, Rem31. You have certainly got ne thinking as I also have shortness of breath.
15 years on Hydrox breathing ok alas now losing HAIR !! or is that because I am 81 ?
I'm turning 78 in a few weeks. Have been on Hydroxyurea 13 years for ET. My hair is thinning out too, but so far not a real problem because I had fine, super thick hair to start with. I notice the thinning more on the sides than back or top. I think it is from the HU, but there is no way to tell. I have long hair and am always finding single hairs that dropped or broke off, very annoying. It's always just single hairs though, no clumps. My stick-straight hair now has a little curl from the HU which is a positive HU side effect, except on my eyebrows where the curliness gives a bushy effect.Oh, I have occassional shortness of breath too.
Wow... that's troubling. I'm at 5 years HU now...
I too have been on Hydroxycarbamide for 9 years with the dosage fluctuating. Recently my dosage was more or less doubled and since then I have noticed increased tendency to breathlessness. I brought this to the notice of my most recent haematologist ( never seem to get the same one two times on the trot!! ) shortly before Christmas, who took it seriously enough to send me for a chest X-Ray after the consultation. Before I had left the hospital he phoned me to say that there was nothing conclusive so he'd arrange a CT scan, which I had done two days ago.
So far I have heard nothing as to the result of the scan, which to my mind means either:
1) It is puzzling them.
2) I've got a month to live and they don't want to spoil my new year
3) There's nothing to report.
I'll go with anything other than option 2.....
Anyway, I'm encouraged that my concerns are being taken seriously.
Relax - stop worrying- medics will sort you out - if urgent they would have you appointment ASAP . Enjoy each day .
I think you meant this reply for the original poster.
I am thoroughly relaxed!!
I stopped HU due to shortness of breath. It went away within a week of stopping HU. Was only on it 18 months. Besremi now. 💪
Its possible. Its a heavy duty drug. 9 years is a long toll on your body.
You are 85 years old.The drug has clearly helped you to achieve this age. I would not jump to any conclusions of cause-effect .I have said many times before, we take for granted the miracles of modern medecine and sites like these, whilst excellent, do tend to attract the disgruntled.Hope you live a longer and happy life.
I had been on hydroxyurea for about 4 years. During that time, I was short of breath, had a horrible chronic cough, was diagnosed with COPD, even though I never smoked, hospitalized with pneumonia, and told I had a partial collapsed lung and sleep apnea. I became pre-transplant and protocol was to take Ruxo first. I started last summer and I’m like a different person. My cough is gone, I can finally breathe, and my pulmonologist couldn’t believe how improved my lungs were after a c scan. No one ever attributed it to the hydroxyurea until now.
Hydroxycarbamide 
Hydroxycarbamide
Hydroxycarbamide Dose 
Skin and Hydroxycarbamide
