Pneumonia With ET

[Raphael_UK]

Hi all, hope you are all doing well. Last week I had the most horrendous chest pains, but didn't feel cardiac related so I ignored it, then this Monday, I was finding it hard to breath, I phoned 111 and they booked me in to A&E. They did some X-Rays & tests and said I had Pneumonia. They gave me IV antibiotics and rehydrated me. They gave me 2 types of antibiotics to take at home and sent me home and told me to take it easy for a few weeks. I told them I had ET so that they were aware of it. I feel so tired that brushing my teeth takes all my energy. Has anyone else had Pneumonia and did they get any additional help due to having ET. I am 68 year old bloke with ET/MPL on Peg.

[Susana7]

So sorry to hear this Raphael. I don’t have a similar experience to share but just want to wish you a speedy recovery. Did you have the pneumonia jab? Susana x

[Raphael_UK in reply to Susana7]

Hi Susana, hope you are well. I’ve had 3 jabs, still working on trying to get my 4th. Good to hear from you x

[DJK12 in reply to Susana7]

I had had the pneumonia vaccine and unfortunately still had it - somewhat annoying but presumably wrong kind of pneumonia!

[Hidden]

Oh, poor you! I'm still newly diagnosed, but I suspect that I've been living with PV for at least five years, if not longer. The exhaustion is normal for pneumonia, or any severe infection, come to that - listen to your body, do what you can, and if all you can do for a day or so is clean your teeth, so be it. When I had Covid-19, right back at the beginning, I couldn't stand up long enough to have a shower for several days! Anyway, get well soon!

[Raphael_UK in reply to Hidden]

Thank you, I don’t feel too bad if I don’t move, but finding it bit weird asking my wife to help me shower.

[Hidden in reply to Raphael_UK]

Oh, I know that feeling all too well..... just stay quietly in bed, drink plenty of fluids, etc, etc, etc..... get well soon!

[DJK12]

You've had a debilitating dose of pneumonia Raphael - very scary. The hospital sound as if they've really attacked it but from experience it does knock the stuffing out of you. As they said you should take extra care of yourself until your strength returns.

I would suggest though, as you're on pegasys, that you let your haematology team know. Pneumonia can be a side effect of the drug though rare. Unfortunately A&E departments probably aren't aware of this. I had it as a side effect 7 years ago although it was slower in gestation than yours - I felt a problem with my lungs for 4 weeks before it really took hold. I wasn't getting anywhere with the Medical Admissions Unit which the excellent GP sent me to so eventually phoned the emergency haematology number. I was actually treated on the haematology ward as I needed oxygen for a week and with antibiotics and also eventually steroids.

I really hope you feel better soon Diana

[Raphael_UK in reply to DJK12]

Thank you Diana, that's really useful, I will contract the haematologist. thank you so much for taking the time to reply. Raphael

[DJK12 in reply to Raphael_UK]

ET 500 has made very good points especially about a follow up x-ray and also being alert to it not clearing properly. I had 3 hospital admissions, all in haematology, with it before it finally cleared - numerous different antibiotics etc - though only needed oxygen with the first one. It had obviously got a hold rather silently as initial x-rays plus CT scan were clear.

Your doctors though sound as if they have treated it promptly and aggresively so hopefully it is on the run. Unfortunately despite it working well on the blood counts pegasys had to be stopped completely - however judging by the majority of positive posts about pegasys I think I had bad luck.

[EPguy in reply to DJK12]

Hope you are feeling better soon.

What was your last PEG dose? I seems you had reduced it before stopping completely.

Is Besremi available to you? I can't say it is any better for your conditions than PEG, but it can be easier to tolerate for some. You might discuss with your Dr.

[DJK12 in reply to EPguy]

Thank you - this episode was actually 7 years ago and I've now been on Ruxolitinib for 4 years. It too seems to leave me prone to pneumonia but more easily treated. I'm also more alert to the early signs. Maybe if Besremi had been about then it wouldn't have happened?

[EPguy in reply to DJK12]

Most likely Besremi would not make a big difference in that outcome.

<<Pulmonary toxicity has occurred in patients receiving interferon alfa products, including BESREMi. Pulmonary toxicity may manifest as ... pneumonia...Discontinue BESREMi in patients who develop pulmonary infiltrates or pulmonary function impairment.>>

accessdata.fda.gov/drugsatf...

It says "discontinue" rather than adjust dose. So pulmonary problems are not good with INF.

[Annula in reply to Raphael_UK]

Good luck Raphael - you have had some constructive advice from the Forum, so hopefully things will improve. In generally fit people, it may take 6 months to fully recover from pneumonia so try not to be too hard on yourself - early days yet...

[Raphael_UK in reply to Annula]

Thank you Annula

[Wyebird]

Sorry to hear you are unwell. To take it easy fir a few weeks would be difficult for me as I’m always trying to push myself it’s my way of fighting fatigue something we MPNers have to constantly do.

Tell yourself total chill time for at least two weeks. Do you have anyone to help you through this?

Sending hugs

[Mazcd Partner MPNVoice]

Hi Raphael, so sorry to hear this, take care of yourself and just do what you feel you are able to do. Best wishes Maz x

[ET500]

Sorry to hear this.. I had much the same last summer.. took at least 6weeks to get to the stage of going out to local shops. Took a 5 mins walk 15mins as had to keep stopping. Don’t rush it. Make sure you get a x-ray in a few weeks after feel better, to make sure lungs clear. I had a large sum of steroids for 2weeks plus antibiotics, then reduce steroids for 4weeks and as wasn’t improving doctor changed antibiotic , before I finally started to improve. Not all antibiotics works for everyone . So if not improving make sure you go back to doctor as there are other drugs to help.. Hope you feel better soon .

[Hopetohelp]

Wishing you well and a very speedy recovery. Thanks for sharing and we can all be aware now

[Cja1956]

Hi, Raphael, so sorry to hear what you’re going through. I’m post Et Mf and was diagnosed with pneumonia about a week and a half ago. I also posted on here under “Bone pain and chills follow up”. I was in the hospital for 2 days. My cough is almost gone but I’m still very weak and fatigued. You just have to wait it out and do what you can. Do you live alone? My doctor in the hospital told me after two days of IV antibiotics, I wasn’t contagious anymore. I continued my antibiotics at home. So maybe you can ask a friend to come help you a little bit maybe to make you some tea and maybe some soup. All I can say is that you will feel a little stronger every day. It just takes time.

I wish you a speedy recovery.

Cindy

[Raphael_UK in reply to Cja1956]

Hi Cindi, I hope you feel better soon as well. I’m continuing my antibiotics at home as well. I’m lucky I have a very patient wife so food wise and cups of tea are no problem.