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    • #11267

      Hi Everyone,

      I recently received a comment on one of my columns about a potential side effect of Ofev. A woman mentioned that after taking Ofev for awhile, she has noticed that her hair seems to be thinning. Has anyone else experienced this side effect while taking Ofev? If so, do you have any remedies to help stop this, or lessen it from happening while continuing to use this anti-fibrotic medication? I’d love to hear from you and share your feedback with the woman who made this comment originally.

      Thanks in advance.
      Charlene

    • #12386
      Rose Miller
      Participant

      Hi Charlene, I just joined the forum and would like to comment regarding hair thinning.  I was diagnosed with IPF Oct. of 2015 and started OFEV on 2/2016 and have been on it ever since.  I have noticed hair thinning over the past few years, but it seems to run in our family on my mother’s side, so I’m not sure what’s causing it.  No one in my family has IPF (that I know of).  I am 76 years old and am also on other medications ,  which may also be contributing to my hair loss/thinning.  I haven’t seen it as a side effect from Ofev in particular.  I’m taking Biotin daily for hair, skin and nails, so hopefully that will help.

      • This reply was modified 1 year, 11 months ago by Charlene Marshall. Reason: formatting
      • #12393

        Hi Rose,

        Thank you so much for contributing your experiences to this thread, and welcome to the PF forums! I really appreciate the sharing of your experience, as this was a topic not many folks could speak about and one of our members asked the question originally. I didn’t know this was a potential side effect and I am on OFEV as well, so I’ve begun watching for this.

        It sounds as though you’ve been on OFEV for two years now, did the hair thinning begin recently? Just curious as to the timeline, if this is something you might be able to identify? If not, that is okay as I know you mentioned that you aren’t entirely sure what is causing it. It’s interesting that some people find this is a side effect of OFEV (or they suspect it is..) and some don’t notice it. It’s a hard thing to correlate, isn’t it?

        The Biotin is a good idea to help with these things! I’ll maybe look into factoring this into my life as well… thanks again for sharing Rose. I really appreciate it 🙂

        Charlene.

      • #21156
        Pam Steele
        Participant

        My hair is thinning daily.  I have started taking Biotin and I hope it works.

        • #21158

          Hi Pam,

          Thanks for sharing about the Biotin, glad it is working for you! I’ve heard lots of good things about this as well, and appreciate the reminder that this could be an option to help with the unpleasant side effect of hair loss. Thanks again!

          Charlene.

    • #12452

      I have noticed my hair thinning on top of my head, for the last few months. I have or had, very thick hair.  Not sure if it is because of getting older or the Ofev. I did notify the pharmacist about it and she said they need to see if this is a common side effect.

      I too take biotin so I hope it will help.

    • #12462

      Hi Mary,

      Thanks for getting in touch and sharing your experience with hair thinning, potentially associated with OFEV. This isn’t something I’ve noticed yet, although I find I lose a ton of hair when I wash or straighten it, so perhaps I just haven’t lost enough yet? Not sure. Thanks for letting us know about notifying the pharmacist, and interesting that they weren’t sure about it being a common side effect. Are they going to look into it and let you know? If you wouldn’t mind, would you share their conclusions?

      I’m going to look into the biotin as well, now that I know several forum members use it… great idea!

      I hope you’re doing well Mary.
      Warm regards,
      Charlene.

    • #20378
      Thom
      Participant

      Hmm. I’ve been balding since my early 30s.   I’m 71 and still have a decent crop.

      One thing I have noticed that made my wife jealous . The once hairy legs I had are now as smooth as a babies you know what!  It happened  fast so I’m assuming it’s from ofev.   Most of the side effects are diminishing so it seems.  Charlene suggested imodium, 1/2 tablet with thr ofev.  Since than the stomach isn’t churning.  The diarrhea has nearly subsided and no more vomiting!  Hurray  for that!   But all the pressure on my stomach seems to have caused a hernia.  The pain is unbearable. I hope to see a surgeon next week.   My pulmonologist says unless its absolute not to get surgery.  His worry is infection.  But I’ll take that risk. I need to keep moving.  Right now I barely walk or stand.

      Another side effect is I now have cirrhosis of liver and enlarged  spleen.   I’m not a drinker. Never have been.  I enjoy a beer or wine once in a blue moon, but now it’s a thing of the past

      Zero tolerance from now on.  But my thinking is what is the worst that can happen?   For my wife I most likely will abide.

      I’m sure like most here we’ve  never been sick.  But now this.  One day at a time.

      Thom

    • #20380
      Burma
      Participant

      I have been wondering about this. I seemed to have lost quite a bit of hair the last several months. While I was at my last hair appointment, my hair dresser said I was losing my hair, and maybe should have my thyroid tested. I did have it tested and the thyroid is just fine. I mentioned it to my GP and he said it might be a side effect of the OFEV, although, it is not listed as a side effect. Anyone else having a problem with hair loss?

    • #20382
      Anne Philiben
      Participant

      I am no longer on OFEV but did notice my hair thinning.  Didn’t know what was causing it. It doesn’t seem to be a problem now that I’m no longer on OFEV.

    • #20381
      Thom
      Participant

      Also a skin rash.  No itch.  But it is there on my wrist

    • #20389
      Chuck Pefley
      Participant

      Hi Charlene,

      Aside from “normal” male-pattern hair loss I have experienced changes in what’s left of my hair. Thinning as well as a much finer texture. Cause? That’s the big question, isn’t it? Until running across this comment thread I simply assumed my hair changes were the result of the heavy chemo treatments I had last year which did result in complete hair loss. When my hair regrew the new texture is much finer … almost like baby hair … and also sparse in places. My full beard is however is pretty much the same as it was before chemo. Difficult for me to point to Ofev which I’ve been on for almost 2 years as the hair change culprit.

      So, as with so much of life, it’s complicated.

      Cheers,
      Chuck Pefley

    • #20392

      Hi Chuck,

      Nice to hear from you!

      This tends to be a very popular topic, and unfortunately something many patients can relate to, especially if they are taking the anti-fibrotic medications. I find that I’ve always lost a lot of hair, especially in the shower, but even more as of late. I wonder if your experience is maybe a combination of both the chemo hair loss and the Ofev? I think Ofev is playing a part in my excessive hair loss as well, and especially the change in its texture. It is complicated, I agree…

      Is it overly hot where you are now, Chuck? It is supposed to feel like 45 degrees here with the humidity today so I’ll be spending the day inside. That is far too hot for my compromised lungs!

      Take care,
      Charlene.

    • #21112
      Patricia Williams
      Participant

      I am on Ofev and am experiencing hair loss. Hope tp get some help with this.

      • #21119

        @prwillie

        Hi Patricia,

        Thanks so much for your comment – this is a topic I find particularly interesting, as I too find I lose a lot of hair since starting Ofev. As a young adult, I find it disheartening so I can certainly understand why this can be upsetting. I recently asked my friend whose Mom is a highly sought-after hair dresser in my hometown if there is anything I can do about my damaged hair (I do put it through a lot: blow drying, straightening, etc) but I am convinced the Ofev is making it worse! She recommended a hair repair mask to try and put some moisture and conditioning through it “from the inside out” (ie. strengthening the bonds of my hair). It is quite pricey for the three treatments (No. 3 (the repair mask) and 4 & 5 is what I use) and it was about $90 but I am very happy with the results so far. I feel like I’ve lost less hair and that it looks healthier too so I had to look at it as an investment. Maybe an option for you? The product is called Olaplex and you can read more about it HERE.

         

        Hope this helps a bit!
        Kind regards,
        Charlene.

    • #21116
      Connie Lum
      Participant

      Hi,

      I am on Esbriet. Almost a year now. I have noticed an increase in hair loss, especially in the shower. My hairdresser says she doesn’t think I have more hair loss but I have a lot of hair to begin with. I know this directed at Ofev but I think there is a crossover of side effects between the two drugs. This could be difficult to blame hair loss as a side effect because it also comes with aging and other things. Of all the other side effects, this is the least worrisome.  Have a good day everyone and try to enjoy every second of it.😊

      • #21120

        Thanks Connie, you too! 🙂
        I so appreciate your positive attitude and thoughts when you comment on here. Hope things are going well for you.

        Charlene.

    • #21825
      Marianne
      Participant

      Hi Charlene –

      Not sure about thinning of hair but I am loosing more hair in the shower.  My hair stylist also notices that I am losing more hair than before Ofev.  I have very thick hair so it doesn’t appear thinner.

      I seem to be tolerating the Ofev pretty well.  Getting ready to retire in December.

      Next appointment with pulmonary is Feb 2020 when I will go through PFT, 6 minute walk test and couple other tests to see if oxygen levels are doing well or need to add oxygen.

      Currently either walking or going to the gym 6 days a week.

      Feeling good most of the time.

      I was recently in FL and loved the warm temperatures but the humidity made breathing more difficult.

      Hope everyone is doing well.

      Marianne

    • #21831

      Hi Marianne,

      So nice to hear from you, thanks for writing! Like you, I seem to be losing more hair in the shower as well and I don’t know if it is effecting my overall hair amount but it foes feel like it somedays. I can’t help but think it might be the Ofev. Speaking of, I am so glad to hear you’re tolerating it well so far. Have you had to increase/decrease your dosage, or have you been managing with the original one prescribed to you? I hope it continues for you, that is good news. One more month until retirement – exciting! What do you plan to do as a retiree?

      Good for you for walking and going to the gym, that is awesome news and glad you’re feeling pretty well. Goodluck with your appointments in February. Keep us posted 🙂
      Charlene.

    • #23436
      Jane
      Participant

      Hi everyone,

      This is my first post. I have been on Ofev 150 mg 2x’s a day for 2.5 weeks so far and am tolerating it well. I ave to say I has a lot of anxiety about this medication but after a diagnosis of IFP I knew I must take it and I am thrilled that I can tolerate it.

      I just googled hair loss and Ofev as I have been noticing a lot of hair loss. I have very thick hair but  am very worried about thinning hair. I just ordered Biotin and the three products that Charlene mentioned.

      I had not read in the side effects of OFEV anything about hair loss. This will not stop me from taking OFEV but i am wondering if the hair that falls out grows back? I just don’t know what to expect; is it a lot of hair loss or just more than usual? I also color my hair, is that something I need to stop?  Will I start to lose my hair in clumps?

      If anyone has can give me more information or advice I would greatly appreciate it.

      Thank you,

      Jane

       

    • #23437

      Hi Jane,

       

      Thanks so much for writing and welcome again! It is so nice to be able to have this community available to use to bounce ideas off and discuss IPF-related struggles. Tolerating Ofev is a popular topic on the forums, and I am also glad to hear you’ve been tolerating it well so far.

      I can’t ascertain if my hair loss is related to Ofev or not, I thought it was at first but it seems to have slowed although I still feel like I lose a lot of hair compared to others. Of course I have no way of measuring that though! I also switched my pillow cases to silk, this has helped I think as it is softer on my head as I roll around at night. I’ve not stopped highlighting my hair since my diagnosis or starting Ofev, so I don’t think this is something you’d have to do 🙂 I use quality shampoo/conditioner now and notice a difference when I don’t have access to them ie. when I am away or traveling. I think this helps too.

      Anyone else have their thoughts on this topic to share? Thanks for writing Jane!
      Charlene.

    • #23439
      Thom
      Participant

      Hello Jane, sorry to hear about your diagnosis.

      I was diagnosed abot 16 months ago.  A couple of months later i began to take 150 mg of OFEV.  I was alright with it for a short time.  I think perhaps 3 or 4 weeks.  Than suddenly everything let go.  My personal suggestion is dont stray to far from home until you are sure.  Diarrhea seems to be the biggest complaint.   I restarted Pulmonary rehab for thr third time last week.  And OFEV came up, apparantly the diarrhea is the biggest complaint.  I had to have a lower dose because i couldnt tolerate it.  Ive been on 100 mg for over 1 year.  Its still with me but not as bad.  The good news is my doc said ive not progresses progressed significantly.  I suppose thats good news.  I do have occasional vomiting, but it may be due to the buildup of mucus.

      Hair loss!  For myself i have to find humor or I’ll go crazy, only because i have other things going on that cant be addressed.  Double hernia and a back thats keeping me from being mobile.   After seeing several surgeons not one will touch me.  They all agree due to the IPF I’d never survive the surgery, unless it was for a lung replacement.  Thats out of the question on my part.

      Im 71, started losing hair in my 40s.  For me i say its only hair.  And i can wear a hat!  Understandably as a female its different.  All the hair on my legs is gone, making my wife jealous.  Im not a gorilla type guy, but about 50% is gone on my chest and back and my armpits!  It did not fall out in clumps.  Over a period of time i began to ask myself, am i losing hair?  Its insignificant to me.  When i wear a bathing suit i look like Casper the ghost!  My friend calls me The Great White Hope.  Oddly the hair on my arms seems to be more than I have ever had. My eyebrows have thinned.  Thats goo . I cant stand seeing men with bushy eyebrows!!  I wish the hair on my face would stop growing. Im tired of shaving after 50 years.

      But hey.  Im still here, not as active as I’d like to be, none the less, i still feel alright.

      I think all of us here expected to be on some kind of ride.  Some more, some less.  By no means am i attempting to minimize anyones symptoms except my own.  Im thankful i can find a tiny bit of humor in my case.

      Hopefully your body will find the side effects minimal.

      Best of luck to you Jane.

      Thom

    • #23442
      Jane
      Participant

      Charlene,

      Thank you for your immediate response, I am impressed with your timing on your reply and appreciate your advise.

      I have already ordered the air products and will buy a satin pillow case.

      Best,

      Jane

       

    • #23503

      No problem at all Jane, happy to help where I can! I hope these suggestions curb the hair loss/thinning. Let us know how you make out, this sure is a pesky issue to have. Take care and keep in touch!
      Charlene.

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