Viewing 27 reply threads
  • Author
    Posts
    • #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.

        • #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.

                              • #25906
                                Majella Callaghan
                                Participant

                                  I was on Ofev for about 1 and a half years and came off it in June this year as it was causing gastric problems with weight loss of about 1 stone over a year.  As I am a small build, I could not afford to lose  much more weight.  My Consultant took me off it.  I noticed my hair thinning over that time but I am still losing hair since I came off the Ofev.  My hairdresser has also brought my attention to it.  I always had a lot of hair before this but now notice the lack of thickness.  Did anyone else come off Ofev and continue to lose hair?

                                • #25913

                                  Hi Majella,

                                  Sorry to hear of the awful side effects associated with Ofev: suspected hair loss and weight loss! It is such a tough drug to be on for some. I feel like I’ve lost more hair since starting Ofev as well, but it hasn’t been significant. I switched the shampoo and conditioner to try to lessen this (to a salon level quality one) though I don’t know with certainty whether or not it’s making a difference. I wonder if your hair dresser can recommend any products to help slow this, now that you’re off the Ofev? I’m curious to hear others’ experiences with this as well. Thanks for writing.

                                  Char.

                                • #25917
                                  Jonathan Poland
                                  Participant

                                    Is it the Ofev or actually the IPF?  My hair is thinning but I’m NOT on Ofev.  The thinning has been going on for about the same amount of time that I had other IPF symptoms.  Or it could be male pattern baldness – my maternal grandfather had thinning hair; but he also had IPF symptoms long before IPF was defined as a disease…

                                    jon

                                  • #25925
                                    Peg
                                    Participant

                                      I have been taking OFEV for 4 years and also have thinning hair.  It started about 2 years after beginning to take it.  My hairdresser made me aware of the thinning and it has progressed and is very thin on top.  There is no way to make it look good so I’ve started wearing wigs.  I did make the doctor aware of this issue.

                                    • #25935

                                      Hi Peg,

                                      Thanks for sharing, though so sorry to hear you’re dealing with hair loss. Did your doctor say anything about this? I would never have known it could have been a side effect of Ofev without the members of this forum sharing, so I’d be curious to know what doctor’s think when patient’s make them aware of this….

                                      Take care,
                                      Char.

                                    • #25938

                                      Hi Jon,

                                      Interesting question about the actual cause of hair loss! I can’t say I know the answer to that (or would be qualified to guess) as many people associate with Ofev but it doesn’t sound like that is possible in your case… really interesting.

                                      Has anyone spoken to their doctor about hair thinning/loss as a side effect of IPF/PF vs. Ofev? I’d be so curious to hear their response.

                                      Char.

                                    • #25966
                                      Anne Philiben
                                      Participant

                                        I noticed that my hair started thinning while I was taking OFEV. It has been two years (almost to the week) that I stopped taking OFEV and the hair loss has stopped.  I was really sick and tired of the broken hairs being all over the place. Glad it quit.

                                      • #25970
                                        Ron
                                        Participant

                                          I experienced hair loss while taking Ofev.

                                          I was on Ofev for about 6 months when multiple side effects showed up. I was willing to tough it out but my pulmonologist said no.

                                          I am male, and have a healthy amount of hair. My hair is straight. No one in my family has suffered baldness going back to both grandparents.

                                          I first noticed the hair loss while combing my hair. It started a couple of months after I started taking Ofev. It quickly escalated to where my comb gathered alarming amounts. I never saw any hair on my pillows or shirts.

                                          I started researching hair loss products like Rogain and quickly realized that the active ingredient in most products was minoxidil. The prices varied. I ended up getting Equate Minoxidil Hair Regrowth Treatment for Men at Walmart. It definitely helped.

                                          At that time my scalp was beginning to show thru the thinning hair around the crown area. Minoxidil stopped the hair loss. About this time I stopped the Ofev. I got sloppy about applying the minoxidil on a regular schedule after about two weeks. I never finished the full treatment regimen of minoxidil.

                                          Today all of my hair is back and all is well. It’s been around two years since I stopped Ofev and Minoxidil treatments. I would say it took about a year to regain all of my hair.

                                          Ron

                                        • #34904
                                          Tony Hernandez
                                          Participant

                                            Greetings.   My IPF diagnosis was five years ago and the OFEV treatment started about four years ago.  I am under care, medical visits CTScans, other studies with the Veterans Affairs.  My father had lost much of his hair at 20 and his father was quite bald, too.  Mother’s side keeps it.  I always had a slight receding hairline.   Perhaps during the past four or six months, the thinning is more serious.   I have always found lots of loose hair on my hair brush, but never shows on my pillow.  Shampooing is 5 out of 7 days because of oiliness and itching and now because the darn CPAP really messes my hair at night.

                                            I just discovered the forum attention to hair thinning and possible side effects from use of OFEV.  I guess I should read the written material that comes in the Rx  box.  I have been very successful at combing-over and kept my Frankie Avalon look about me for many years but in 2023 that tactic is failing.

                                            I will bring up the subject with my Pulmonologist at the next appointment date… and google “biotin” for sure.

                                        Viewing 27 reply threads
                                        • You must be logged in to reply to this topic.

                                        ©[current-year] KLEO Template a premium and multipurpose theme from Seventh Queen