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    • #21881

      Many of us have talked about the unpleasant gastro-intestinal (GI) issues that come from taking both the anti-fibrotic medications approved for idiopathic pulmonary fibrosis (IPF): Ofev and Esbriet. While everyone seems to tolerate them a little differently, many of us have discussed the GI-related struggles of Ofev in particular. I am only on this medication and have never tried Esbriet, so can’t comment on how tolerable that drug is but I know Ofev took me some time to adjust.

       

      I’ve been on this medication for quite some time now, so it would be unusual that it would cause issues with my skin being dry, itchy and occasionally swollen. I can’t think of anything else that might be causing this unpleasant side effect: no change in diet, detergent, soaps etc that sit directly on my skin. The weather is cooler now, though I do keep my skin as covered and moisturized as much possible so I don’t imagine this is the cause either. I thought I’d pose the question to see: has anyone else has noticed any effect(s) of this disease (IPF) on their skin since being diagnosed?

      I would imagine it is likely the side effects of the medication for me instead of the disease itself, but I’d be curious to hear from you if you notice any changes in your skin since your diagnosis and what those are. Many thanks!

    • #21893
      Glenda Rouland
      Participant

      I take Esbriet and have developed primoral dermatitis    Never ever had sensitive skin or rashes before.   Also my skin very dry

      • #21897
        Mark Koziol
        Keymaster

        Hello Glenda, thank you for telling us about your skin problem. Did your doctor attribute the dermatitis to sun exposure? Hopefully treatment for the dermatitis is successful. Please take care, Mark.

      • #21902

        Hi Glenda,

        See you at the Summit! I am on my way now 🙂
        Charlene.

    • #21894
      Karen Stennes
      Participant

      I take OFEV, have for a year and a half and have had many problems with side effects, one being very dry skin. If anyone has found a skin cream that helps with this I would appreciate knowing.

      • #21896
        Mark Koziol
        Keymaster

        Hello Karen, I didn’t experience dry skin when I was taking ofev. After transplant I am required to see the dermatologist at least once a year because the anti-rejection meds and immunosuppression meds make transplant patients more susceptible to skin cancer. My dermatologist recommends the aveeno products. I sometimes use in the winter months to offset the dry air. I also always try to drink about 100 ounces of water daily. Hope this helps. Mark

    • #21925

      Hi all.  I have been on 100 mg OFEV for a little over two months now.  Initially I had some diarrhea problems but changed my diet a bit to be able to handle things.  After my last liver test my doctor went ahead and upped me to 150 mg and put me on oxygen.  I have only been on the increased dosage for two days and I have been getting a little nausea and diarrhea again.  I am lucky enough to have a four day weekend so I am working on adjusting my diet again while I am at home and close to the restroom.

      I saw Charlene’s post about itching and I have been having some skin issues.  I spent 26 years in the US Navy and whenever we went to a new country or the ship got underway I used to itch like crazy for a couple of days.  I think it was due to the PH of the water or something like that and it always went away after my body adjusted.  I have also experienced it a bit during the spring and fall when the San Diego weather can’t make up it’s mind if it wants to be cool or hot but it only lasts a day or so.

      Recently I have been itching a lot and now I am beginning to think it might be the OFEV as it is not just my legs itching this time but also my back and chest.  It has intensified since I have been on the 150 mg capsules.  For right now I will give it a couple more days and see if it goes away and if not I will talk to my doctor.

       

       

    • #21929

      Hi Randy,

      So nice to hear from you, thanks for writing and sharing your experiences with us. In regards to the 150mg dose of Ofev, this seems to be the difficult spot for many when it comes to tolerating this drug and GI-related issues. I am also on Ofev, and want to make sure I share a tip that made a world of difference for me when I struggled with the issues you described with Ofev. My Mom is a pharmacist and suggested the sublingual (under the tongue) dose of Immodium to help with the GI issues. The oral tablets didn’t help me, in addition to adjusting my diet but I swear the sublingual tablet has been a lifesaver for me and other patients on the forum. If it doesn’t relieve with your diet change, give this a try.

      With regards to the skin issues, yes, it certainly could be weather related or even a medication side effect. Such a pain to try and figure out which thing it is, huh? I do know several people who developed an allergy (itching) to Ofev so it could be that, keep a close eye on it and try to ensure the scratching doesn’t break the skin.

      I didn’t recall you were from San Diego – I may be heading out there in a few month’s time to have a discussion with a clinical trial company out there who is working on erradicating the IPF-related cough. I’ll let you know if I head that way!

      Charlene.

    • #21930

      Good morning Charlene,

      Thanks for the reply.  My diet experimentation has gone well.  I have not had any problems as long as I eat normal non spicy foods and take the pills with peanut butter crackers or ramen noodles.

      I still itch but I am beginning to think it is just the weather changing here.  It is the time of year where we have the AC on during the day and the heat on at night.

      San Diego is a great place and maybe I can show you around if you get down this way.  I was transferred here in 1982 and remained here after I retired from the Navy in 2000.  I currently teach Shipboard Satellite Communications Equipment Repair for the Navy.  I am lucky to still be able to teach, though I have to watch that I don’t move around too fast or get too animated when teaching like I used to.  The military guys that I teach with also look after me so I am in good hands.

      Well the grandchildren are waking up and will probably want some breakfast.  Have a great weekend.

       

       

      • #21939

        Hi Randy,

        So nice to hear from you, thanks for writing back! Really glad to hear the diet exercise is working and that you aren’t too effected by the GI-side effects of Ofev. I’ve heard the trick is to take this drug with food, so glad that is working for you.

        Weather certainly has an impact on our skin – Canada just got tons of snow the last two days (a rude awakening after being in Texas) and I can feel it on my skin, very dry and itchy. Hopefully the skin issues resolve soon for you!

        As for San Diego, that would be great! I’ll be sure to connect if I do head down that way 🙂
        Take care,
        Charlene.

    • #21949
      Ron Reid
      Participant

      Hi Charlene:

      Another Canadian here – from the Orillia area.  I started Esbriet last spring; much easier to tolerate than Ofev for GI issues, but after I graduated to the full dose, I got a major itchy rash that persisted for months.  At first, only on areas exposed to the sun, although I had been careful to minimize my exposure and to use sunscreen.  Then spread to other areas like my chest that had always been covered by clothing.  After talking with the staff at the Inspire program, I stopped taking the Esbriet until the rash healed up.  Am now gradually starting again, but on the advice of my doctor, will likely just go to two pills twice a day, and three pills in the evening.  The info about Esbriet does warn about sensitivity to sunlight as a side effect, but I learned the hard way that you have to be really careful.

      Thanks for all you do; I don’t post much, but get a lot from reading regularly.

    • #21972

      Hi @ron-reid,

      So nice to hear from you and hello from a fellow Canadian! Orillia is a beautiful area, especially in the summer months… very lucky to be part of such a wonderful spot in Ontario.

      Thanks for sharing your experience with Esbriet, though so sorry to hear of your awful rash. Another member of our wonderful forums community had a similar experience actually, and his rash was primarily on the gross motor muscles (upper thighs, etc) and took a long time to go away. I’ve heard to be so careful in the sun on Esbriet, and I hope the rash wasn’t painful for you? Keep us posted on how you make out with the new dosing plan, I think (if I remember correctly) this helped the individual I was referring to as well, although I don’t know if he had success long-term. Curious to hear how you make out and thanks again for writing.

      Kind regards,
      Charlene.

    • #22361
      Linda Williams
      Participant

      Hello Charlene,

      I have wondered about my skin issues, mostly more spots that are pinkish in color, dry and hardened. They also tend to grow some but part of top comes off when I rub it. No redness around it, on arms. Have noted white dry scabby areas on thighs as well. Skin dryer than usual and does not respond for as long to lotion applications.  Occasionally itching on chest and arms as well.  However, I am not on an anti-fibrotic for the IPF. On auto immune labwork IgM was elevated, suspected Waldenstrom Non-hodgkins lymphoma, had bone biopsy which showed cloning of only one type protein chain, so just watching via labwork by hematologist oncologist at 3-6mos intervals for almost a yr and a half now.  No need for chemo at this time.  I did not start OFEV at time of diagnosis of IPF as not sure if chemo would be needed and did not want the two clashing. However, in October 2019 my PCP ordered a fibroscan at my GI doctor office due to my hx of enlarged liver and fatty liver by biopsy in about 1987.  I guess it is a good thing I did not take OFEV as diagnosed with advanced fatty liver (Steatosis) and advanced fibrotic liver.  Having taken Tamoxifen for 5 years post breast cancer starting in 2004 made the fatty liver worse according to my research.  Probably my Dr was unaware of complication but he knew of fatty liver and enzymes elevation. The OFEV would likely have made it even worse.  Next step re liver would be cirrhosis if it progresses.  (Sorry got off track).  Anyhow, without anti-fibrotic for IPF I do see skin changes.  I thought maybe from IPF as have read of skin fibrosis but could be just plain getting older??? Am 74.5 yrs old.

      Linda Williams

       

    • #22385

      Hi Linda,

      Thanks for writing – happy  new year to you!

      Unfortunately, I’ve heard of a lot of people experiencing skin-related side effects of their medications. It is however hard to know whether they are directly due to the medications or other things as our skin is exposed to so many environmental factors. I did have to get a specialty cream to help hydrate the skin on my hands but that could have been due to obsessively washing them in an effort to avoid getting sick. My hands were all cracked and itchy, which may have been partially due to the medications though I can’t be certain.

      I really don’t know what the cause of the skin issues could be for you, however. Probably best to consult with a physician – can your PCP make a referral to a dermatologist for you?

      Charlene.

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