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    • #18190
      Paul met Debbie
      Participant

      Generally I tolerate Trikafta very well (9 months use now).

      The only side-effect I have (from the start) is something that looks like conjunctivitis. More tears, wet eyes, slightly red eyelids, sticky in the morning, and more itchy, occasionally slightly blurred vision (as if new spectacles are needed).

      Levocetirizine (Xyzal – antihistamine) seems to moderate it a bit, but not enough.

      Are there any pwcf among you that experience the same or similar complaints in the eyes, and if so, how do you treat these? Advice much appreciated.

      Paul

    • #18194
      Tim Blowfield
      Participant

      You have probably had relatively dry eyes because of your Cf all your life and the TK has improved your tear secretion and the oily film that caps it. Your eyes are probably not used to it. There again you may be reacting like us “normal’ persons do to pollens and dust, etc. Whether TK has made the tears totally ‘normal’ may yet to be determined. Time will tell. But antihistamine eye drops will not hurt.

    • #18195
      Paul met Debbie
      Participant

      That sounds almost self evident to me, why didn’t I think of that? Thanks Tim, good suggestion. I will ask my pf to subscribe it. I thought also my tearducts might be blocked or withered away from 58 years of not being used enough because of cf-draught. (and I am too happy).

    • #18198
      Paul met Debbie
      Participant

      My doc prescribed Artificial Tears and antihistamine eyedrops.

      I will try the Tears first, because they are the more natural solution. I will keep you posted about the results.

      Happy crying,

      Paul

    • #18201
      Tim Blowfield
      Participant

      Reva found HYLO-FORTE lubricating eye drops by URSAPHARM to be the best for her dry eyes – contain 2mg/ml Sodium hyalurate.

    • #18248
      Paul met Debbie
      Participant

      Thanks Tim. Tried artificial tears, not much better than 0.9% saline.

      After that started antihistamine eyedrops, they work very well. Twice a day 1 drop and my eyes are much less sensitive now. Livocab (levobastine) 0.5mg/ml. So it seems allergy related. Perhaps after spring time I need less of it.

      • #18249
        Tim Blowfield
        Participant

        As the old add said “When you are on a good thing, stick with it!”.  If Antihistamines work – it seems to be an allergy – on top of CF! There is no reason why pwCF should not get allergies.

        Sodium hyalurate is quite natural – highest concentration is in joint fluid. Has helped Reva’s dry eyes.

    • #18250
      Jenny Livingston
      Keymaster

      I’ve struggled much with allergies in the last few years but have yet to try antihistamine eye drops. This thread has made me curious about asking my doctor about adding them. Thanks for that, friends!

    • #18251
      W. Hoh
      Participant

      Hello,
      I’m a retired physician who specialized in occupational and environmental medicine. I have a 14 year old with cystic fibrosis. And I have a lot of personal and professional experience with issues like this.

      it could be that you have allergic conjunctivitis due to an allergen in your environment. The fact that your eyes respond to the antihistamine eye drop would suggest this is the case.

      your symptoms starting after beginning trikafta could be coincidental, as allergies can begin at anytime in life. Mine began around age 35.

      We use pataday antihistamine drops in my family. The lodoss just went over the counter and the higher dose is still prescription only. Maybe they would work better for you. Just an idea.

      There are other things you can do if it is an allergy. We run a HEPA filter in our home heating / air conditioning unit. We also run a filter in my bedroom and that of my child’s bedroom.

      My kid is 13 years old and has cystic fibrosis. His severe allergies begin when he was five and he’s started kalydeco at age six. Worst allergies I’ve ever seen. Without antihistamine eye drops, his eyes can literally swell shut in the spring.

      Consider seeing an allergist who can give you other recommendations and may do some testing. Well worth it.

      For instance, I was convinced that I was allergic to our dog, but testing showed I was not. His long coat was bringing in pollen from outside. So now we keep our Cocker Spaniel’s fur cut short during the spring and summer months.

      There are so many suggestions they can make. They suggested purchasing a Roomba to cut down on dust in the home, as I’m allergic to dust. It has helped a lot.

      These are just things to consider. Of course, always talk with your own Healthcare team before taking any new medication, changing medications or stopping medications.

    • #18252
      Paul met Debbie
      Participant

      Ah, thank you! That is so considerate of you to think about my problem.

      I think the link with Trikafta is strong enough for me to conclude this is a Trikafta-induced allergy. My wife is allergic (hay fever) as well so we take all precautions possible (hepa filters, moisturizing,  dust-free house etc, special vacuum cleaner etc. ). Even our dog is anti-allergic (australian labradoodle) and we keep the fur short.  I am pretty sure this is an allergy to one of the metabolites of Trikafta for it started right away after taking it (week 2) which was in a non-allergic time of the season (August). So far, the antihistamine drops I started in April work fine. I wonder if in autumn/winter, when there are less pollen, their will be even more improvement or not.

       

    • #18254
      Tim Blowfield
      Participant

      Sounds suspicious. Maybe an allergist (Allergy Specialist) can test you to see what you are allergic to. Skin tests are routine these days – should not be difficult to make a test solution from a TK tablet.

      Re your Labradoodle: yes the breed was developed by the Royal Guide Dog Society here in Victoria near to my old Practice and despite its wide use for any labradoodle/poodle cross is actually a patented name of RGDV.  Unfortunately not all are hypoallergenic. What you are doing by keeping fur short is good. We have a number of shampoos that also reduce allergens the best of which was Malaseb which reduces the population of the yeast Malassezia pachydermatis (M). M is a common cause of Otitis and dermatitis (esp paws) in dogs. Keeping ears clean is important as another nasty bacteria often inhabits dogs ears – esp those with flop ears – Pseudomonas. Interestingly studies have shown that the dog strains of P are rarely found in pwCF. That is good but not a reason to be complacent.

      • #18261
        Paul met Debbie
        Participant

        Thanks, Tim. Perhaps I will contact an allergiologist.

        Re our dog: she is an official pedigree, and we have tested her on being hypo allergenic. One of our friends has a severe allergy against dogs and cats. But she wanted to join our art classes still. So she tried it out and even being in the same room as Buddha for more than two hours (who also wanted to be petted) she did not suffer from any trouble. So, we concluded Buddha past the test.

        Thanks for the shampoo tip! Malaseb, never heard of it. We can buy it here too. Is it the shampoo with myconazole and chlorohexidine? Buddha is hypo allergenic, but indeed she suffers from allergies herself nevertheless. Especially in this time of the year from the grasses in the meadow we suspect (gnawing at the paws after the walkabout). Mostly we wash the paws after walking, but adding this shampoo will perhaps even work better!

         

        • #18263
          Tim Blowfield
          Participant

          Yes. It is  the shampoo with myconazole and chlorohexidine – also leaves the skin slightly acidic which also inhibits the yeast.  – Sorry to hear of Budda’s paws – certainly worthwhile washing them (his paws) as soon as possible after returning from a walk. Can include a spray of Vinegar before drying too. Mildly acidic skin wipes are also available. Re: cortisones available in tablets, injections and topical ointments & sprays: avoid tablets and injections if possible: there are good topical ointments & sprays the best of which are metabolized when they get deep under the skin. Then there a number of new drugs and formulations including Cyclosporins and some based on monoclonal antibodies. Treatment has come a long way since I first treated these itchy dogs in 1968.

    • #18260
      Jenny Livingston
      Keymaster

      Re: allergies and Trikafta, I too only started having allergy symptoms after starting Trikafta. I’ve heard this from more than a handful of friends as well — too many for me to believe it’s coincidence. My ENT and I have discussed it quite a bit and our working theory is that I didn’t only develop allergies after starting Trikafta, but that perhaps the thick layer of mucus that previously lined my lungs and sinuses acted as a sort of protective barrier.

      We’ve done testing and learned that I am allergic to many kinds of trees, several types of grasses, mold and fungus, and cat dander. (I’ve known about my cat allergy since childhood, but none of the others.) The chances of me suddenly developing these allergies all at once, shortly after starting Trikafta, seems less likely than there being a link, even if it’s secondary. To reiterate, I don’t believe my allergies are caused by Trikafta, but that I am more symptomatic due to changes in my body thanks to T.

      Paul, your experience seems a bit different than my own, but we’ve put a lot of thought and testing into my allergy symptoms, and this is what we’ve come up with.

      • #18262
        Paul met Debbie
        Participant

        Yes I remember us discussing the theory of protection by the thick mucus layer becoming less after trikafta. Can’t find the original post anymore though. Thanks Jenny, for reminding me!

        Currently the eyes seem to be under control with the antihistamine drops well enough (and tablets). If in next winter situation improves even more, this could indicate that there is a general alllergic component to it as well. In both cases however, handling this will amount to the same: antihistamine tablets and eye drops will do the trick, since other measures are not available. Perhaps in winter the drops will not be necessary.

        It’s fine though, it’s only a small price to pay for all the benefits Trikafta/Kaftrio brought me. This has become a very interesting forum item so far, with a lot of people chiming in and giving precious advise. I am very glad about that, this is what a forum is (also) for I think. Thank you all.

    • #18264
      Tim Blowfield
      Participant

      ‘giving precious advice’  We need to be wary of such – sharing experiences is great and appropriate but ‘advice’ needs to be weighed up carefully. There is a mountain of bad advice on the Internet – some dangerous. Sharing what works or does not work for you is good and may stimulate and suggest questions and possibly answers to the issues that bug us. With TK the forum has shown many side effects  and ways different persons have dealt with them. That helps us to ask questions and seek solutions from our CF teams.  It has also given insight about CF and it’s effects – a whole new mound of information not just the lungs. “The more we know, the more we know we don’t know!”

      • #18265
        W. Hoh
        Participant

        I’m a physician board-certified and residency trained in occupational and environmental medicine.

         

        What I say is based upon best available medical evidence.

        What other people say is…

        less authoritative.

        And not all allergies are seasonal. Including pet dander and allergies to things such as dust (aka dust mite feces)  and mold.

        End of discussion

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