Interferon: Short of Breath?

[Planti]

According to reported side effects data, about 4 % of people on interferon experience shortness of breath for one reason or another.

I have been on interferon (Pegasys) for Jak2 ET since March of 2021. In 2021 I also noted that I was breathing heavily with minor exertion (walking). As I was a smoker I assumed I had done this to myself. FP ordered pulmonary function tests which indicated my lungs were actually pretty normal for a woman my age. I quit smoking 36 years ago.

I had spinal surgery in July and preop EKG indicated some damage to heart. Follow up with internist and EKG now normal, more investigations are pending. I have controlled HT but no diabetes, non significant elevated cholesterol and no symptoms of heart disease so far.

It was a surprise to me that the SOB started after I started interferon. The internist is wondering if it is Pegasys related though recommended I continue until all the other tests on lungs and heart are completed.

Has anyone experienced mild, exertion related, SOB on interferon? What did you do?

Thanks all you great people out there with MPNs.

[Nerjalover]

yes I get shortness of breath and am on Interferon 90 mg weekly!

Up hill I really struggle!

Can’t offer any help - just keep walking and try to keep moving!

[Hopetohelp]

I noticed shortness of breath when they upped my dose to 90mcg. It got better when I went back to 65mcg. After three and a half years my breathing was steadily getting worse especially when I first got up. Big coughs didn’t clear my chest but little shallow coughs would. Very odd. I would take doggy out soon after getting up for a walk and would feel better on return. I also started getting crackling sounds in my throat or just below when I laid down to go to sleep at night. Having stopped the peg in august my breathing improved immensely. I hadn’t realised just how bad it had got . I might add that I have since lost some weight which I sure has helped too. Good luck and let us know how you get on

[Planti in reply to Hopetohelp]

Congratulations on feeling better. What did you transition to from peg?

Hope the improvement is a lasting one.

[Hopetohelp in reply to Planti]

Haven’t restarted any meds yet. Needed a break but have been offered hydroxy and a bmp to see whether I have et or pv. If the latter might qualify for Rux

[Ovidess]

I am on the lowest dose possible of Besremi at last, after not even a year on it steadily, seeing it bring blood counts (aside from red blood cells) come into alignment. I had been experiencing multiple possible side effects that brought down my quality of life. So far, I have seen some improvement but not in sleep (congestion, busy thoughts, unexplained wakefulness) or ability to do more strenuous exercise. I have shortness of breath mainly going uphill or fast but more than that simply feel my limbs are heavy. I'd lost some of my vigor when my big dog got old and ill last year, and have had trouble getting it back despite my remaining little dog's walks. All the phlegm--that sounds familiar. Someone even suggested that SOB and fatigue and coughing sounds like long covid, though to my knowledge I've escaped covid thus far. I live in a valley in the Pacific Northwest, and because it is fire season, it could be that some minor smoke is making my symptoms worse. The fatigue is absolutely new to me though. Never in my life have I felt like lying down in the afternoon.

[Hopetohelp in reply to Ovidess]

I was on peg. Besremi and peg are both interferons so similar. After winter I found I was low on vitamin d. Sun came and took supps. Made a huge difference as had been experiencing what you said about the heavy legs. Not sure if this would apply to you but just a thought. My dog too is on short walks cos of hurting her leg. We worry about our fur babies and the slower walking I don’t think helps. Be careful of low mood on the interferons

[Planti]

I'm also in the Pacific NW though on the north side of the border. I am profoundly fatigued as well and lately difficulty falling asleep. I also have that heavy limbs feeling though I put it down to my spine issues (severe OA).

I hope with longer on the lowest dose of interferon you regain some of your oomph.

[Ovidess in reply to Planti]

Thank you, Planti. I should mention that I went through many tests to see if other problems were causing insomnia or lack of vigor--sleep apnea, stress test, EKG, etc. None of the tests gave reason for these problems, so I think these problems are either related to the disease--PV-- or the drug taken for the disease. I have to say that I am not having regular aura/visual migraines anymore since the Besremi brought platelet counts down. So there are some noticeable benefits to the medicine.

[RoundTheWorld in reply to Ovidess]

Ovidess - I'm interested in the migraine aura stopping. Mine stopped as soon as I started aspirin (later clopidogrel) rather than when I started cytoreductive meds months later (could be coincidence). Are you on aspirin too? Migraine aura are so miserable it would be good to help others resolve theirs.

(It made me wonder why trial of low dose aspirin isn’t routine for aura; I guess misbehaving platelets are only one of several potential causes?)

[Ovidess in reply to RoundTheWorld]

You are right, and the aspirin has been more regular than the Besremi as I had to take a break from it last summer. My hunch is that greatly reducing aura migraines for me was due to aspirin, more water, and platelet reduction.

[Mufftreacs]

Hi Planti,

I live in Australia and have MF. I take Ruxolitinib and recently have become breathless on slight inclines. Thought it was my age but have had all sorts of tests. Not my heart and specialist says it is not my slight anaemia caused by Rux. Awaiting a Pet scan on my lungs but find it strange that other people have similar symptoms.

Hope we find a solution.

Best wishes,

Katie.

[hunter5582]

Hello my friend. Sorry to hear about the dyspnea. As you already know, while not common, this is a possible AE associated with PEG. Given the timing and what you describe, it sounds like a reasonable conclusion that PEG is he cause of the symptom. It would certainly make sense to follow up with the potential cardiac involvement.

I am wondering if the cardiologist did a 2-week monitor to track cardiac function over an extended period of time. When I did this recently, some more short-lived minor atrial tachycardia episodes were detected that would not have shown on a stand-alone EKG.

Since PEG can cause pulmonary toxicity, the planned further testing makes good sense. It is possible that something more subtle is going on.

Please let us know what you learn. All the best until then,

[Planti]

Hi Hunter! It is all a bit confusing as my latest CXR shows I have R diaphragm raised, this can cause exertional dyspnea. This is a newish finding that might also relate to severe foraminal narrowing at C4-5 due to facet arthritis. This was on pre surgical MRI of neck that also showed cord constriction due to a number of factors. I have since had discectomy and fusion.

I am hoping that the neurosurgeon also did a bit of clean up of osteophytes and maybe phrenic nerve will recover. Can sometimes take months to regain. Had CT lung yesterday to rule out PE and will have fluoroscopy with sniff test to demonstrate it is phrenic nerve palsy. Sucks to be so SOB. Fortunately I still have L diaphragm.

I would hate to blame interferon needlessly. My internist seems to have same caution.

Hope all is well in your neck of the woods. It is definitely fall here.

[hunter5582 in reply to Planti]

Sounds like a number of things need to be evaluated to determine the cause of the dyspnea. I am glad that you still have a diaphragm even if is perhaps a bit out of place. It certainly is better than not having one. Aging is not for sissies!

Things are going well here. Just got back from a consult in rural Southern West Virginia. Beautiful country. Autumn is just starting with the colors showing some signs of change. I am definitely ready for Summer to be over.

Wishing you all the best.

[Joetcalr]

hi Planti, my breathing got worse and worse while I was on Pegasys, I put it down to my low haemoglobin count.

Once I came off interferon and had some EPO to pick up the haemoglobin my lung capacity went back to normal. Hope this helps.