• Delores Overby posted an update 3 years, 5 months ago

    Not having a good week. Feeling very depressed. Not only do I have pulmonary fibrosis, I noticed that a rash broke out on my backside,little painful blisters. Found out I now have shingles which are very painful. I had a shingles shot eight ago and I don’t understand why I have shingles. The doctor said my immune system is weak because of the pulmonary problem.

    • Hi @delores-overby, thanks for getting in touch with us although I am so sorry to hear you’re having a tough week! Hang in there, although I know that is easier said than done.

      I wonder if it is common for patients with PF to develop shingles? I say this because I also had them earlier this year (very uncomfortable) as did a few others on this forum. My immune system is also weak as a result of the medications, and I know many others’ are as well so likely we’re more susceptible to them. I’d be curious to know of any studies or literature directly linking the prevalence of PF patients developing shingles. It seems far too common than I’d ever like it to be!

      So sorry you’re dealing with this though, I know they are very uncomfortable and painful. Did you get started on the medications to treat the blisters at least, for some relief? Let us know how you make out and I do hope you’re feeling better soon.

      Kind regards,
      Charlene.

    • Hi Delores, there is a new shingles vaccine now called Shinrix , I had the first of 2 shots of Shinrix in June because my 35 yr old daughter contracted a mild case of shingles that actually has left some scars on the top of her leg . That’s all I need ! I am also on Mycophenolate since the latter part of February which I also was taking 40 mg of prednisone ….OMG, it was such a nightmare …I seriously lost my mind…..please feel free to reply….I’m on oxygen 24/7 …on 6 -8 when walking flat and 8 To 10 out for an evening walk up the road and sometimes I crank the portable up to 15 when doing stairs or when I start one of those horrendous coughs…..let’s keep in touch, I’m 65 next month and have no clue how this can be true …LOL ….keep using those Coach purses and pedi’s and get a cool necklace that’s fairly close to the tube ….thinking of you Delores 😊

      • Hi Sandra, I had a shingles shot 10 years ago and was surprised that two months ago I broke out with shingles. I was shocked. I’m on Mycophenolate 500mg since June. I stop taking prednisone June 30 it was a nightmare for me too.. yes please let’s keep in touch. I just turn 70 in May and was still wearing 4” high heels .lol. My husband has been a great support although he’s just recovering from back surgery. The young lady you see in the photo is my baby daughter she38 and she would take us to concerts in NYC we live in New Jersey. She lives and works in NYC as an executive with WEDmd so she does a lot of research for me. Sandra thank you for sharing the good news about the new Shinrix vaccine. I need to get them right away because I had a mild case two months ago and I have scars on my thighs and lower buttocks. This has all have to get better. Happy Birthday 🎉 to you have fun on your day.😘

        • Hi Delores…..sorry that I’ve been missing in action….some days I don’t know where the time goes …..was at physio today and will go on Friday again twice a week actually , today and last week I walked a mile on the treadmill is 28 min so I’m pretty happy about that ! How are you feeling lately…beautiful weather today and yesterday here in Ottawa…so nice to have the windows open both days .

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