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    • #18218
      Anonymous
      Inactive

      Good morning, I am 48 years from Canada.  I came across the group and really enjoyed your supportive nature of each other.  I have just started my 2nd month of Trikafta.  On a whole its been such an improvement of my quality of life.  I dont cough, reduced physio, wake up with energy, and my lung function increased by 16% in my one month follow up.  However, the past few weeks have been different and a little unerving. My entire body is getting twitching and jerking in various parts, mostly at rest in bed.  I have periodic tingling and numbness in my extemities (fingers, hands, arms ).  They seem to come about in the night and go down as the day continues.  I have had tightness and soreness in my one leg – hamstring and calf – along with some strange sensations.  When I mentioned to one of my Dr’s they said they had heard of tingling but didnt seem concerned.  Its taking its toll on me….wondering if its due to the medication or something else.

    • #18221
      Jenny Livingston
      Keymaster

      James, I’m sorry to hear about the side effects you are experiencing, but you are not the first I’ve heard speak of such things. I don’t think we’ve discussed these specific side effects on this forum, but I’ve seen these conversations happening in other online spaces. It seems that neurological symptoms (including the twitching and tingling) are anecdotally reported as side effects. I don’t know if there is any data to support this yet.

      Personally, I experienced mental health side effects that became disruptive enough that I reduced my dose. This decision was made about 18 months into my Trikafta journey, after much consideration and discussion with my CF team.

      All of this to say, we still have so much to learn about these drugs and their side effects. If it is concerning to you, it’s concerning. It’s definitely worth looking into and continuing to bring up with your doctor. And perhaps someone on the forum will be able to chime in with experience related to this.

      • #18226
        Anonymous
        Inactive

        Thanks for sharing Jenny.  I am sorry you had to go through those things.  I hope all is well now.  I have struggled Health Anxiety for years.  Have learned to cope with strategies developed during CBT with my therapist.  On Trikafta, I feel it has definately amped up the past few weeks.  Its the uncertainty of new things that is always the trigger.  I usually can ignore.  But after a few weeks of the tingles, numbness and twiching its hard to keep doing that.

    • #18222
      Tim Blowfield
      Participant

      Sorry James to hear of your side effects, but not a surprise. Considering that TK improved the CFTR protein that opens the Chloride (Cl) channel – also Bicarbonate. We can expect this to occur in every cell of the body not just the respiratory epithelium, normalizing (lowering) levels within the cells. With Cl & Bicarb lower, balancing cations (Na, K, Ca & Mg) will be lower. We can expect the body to take some time to adjust to the different levels – muscles can be expected to be affected, neurological cells too and also the endocrine cells. No wonder we are seeing side effects but most seem to resolve with time as the body adjusts.  Reducing the dose, as Jenny did, should reduce side effects but some may return as the dose is increased. If not it may mean that the lower dose is optimen. We have much to learn about TK  but  giving up on it seems not the best.

      • #18227
        Anonymous
        Inactive

        Wow Tim…Thank you for the explanation.  If you dont mind me asking, what do you do for a living?  You appear to really know your stuff.  I am an elementary school teacher, but not very skilled in Science (mediocre high school student in Chem and Biology).  Just blow my mind that all of these changes would be happening.  I can recall my physio therapist talking about the breathing aspects, but not the rest of the impact.  Just wondering….do you know how this would all be reflected on a blood test?  Or whether it would be at all?  I just had one done last week as I taper down my prednisone (hopefully off completely soon).  My sodium, potassium and magnessium were all in normal ranges.  Thanks in advance. J

    • #18229
      Tim Blowfield
      Participant

      Actually I am a retired veterinarian. I guess that gives me an understanding of some science and medicine. I have seen problems that occur with salt poisoning in sheep and cattle with significant neurological signs both as levels go up & down. Not being a CF Physician allows me to look laterally about the problem. I have researched CF over the last 13 years since my wife was diagnosed with Atypical CF with many co-morbidities over the years both before and after diagnosis. My thesis is that CF affects every cell in the body to some extent, some more than others. Lungs are often severely affected, but what of the Adrenals, the heart and muscle cells. Is the current understanding of why pwCF get Osteoperosis correct? Or are the parathyroid glands not functioning correctly because calcium is high within those cells?  We need to keep questioning the current assumptions – that’s how Science works.

    • #18231
      Paul met Debbie
      Participant

      Chiming in a bit late this time, had to pass a kidney stone Monday/Tuesday (Trikafta related? Who knows). Not recommended, don’t do this at home kids (I did).

      But back again,  Jennies personal expertise and compassionate heart have already done their work I can see, and I also can only highly recommend Tim’s knowledge and wisdom that springs from his outside-the-box observations and broad expertise as a vet.  Ever thought of vets as super-specialists in treating the ailments of biological life? I did. They do everything and have to know a lot about a lot. They even do surgery. A vet is a complete package of hospital care in one man/women. They have never lost the overview of the entire body of the mammal (and they treat other species as well), in contrast to many of the current specialists that treat human bodies in the hospital, scattered over many specialties.

      Back to Trikafta/Kaftrio. There are many types of ion channels in the body, and even many types of chloride channels that work completely different from the CFTR channel and will not be affected by Trikafta directly. Trikafta is only designed specifically to act on the CFTR  ion channels. But it is almost self-evident that changing the ion balance in two systems as large and fundamental as the lungs and the intestines are, will have effects in almost all of the cells and organs of the body. The body is a complex chemical/electrical machine and ions are the main messengers of the electrical part, next to proteins that do the rest of the messaging (hormones and neurotransmitters are mainly protein based). For instance for nerve cells the ions are most important. This can effect almost all organs, because the nerve system is omnipresent in the entire body. The body will have to adjust to this, and it takes time.

      CBT will be helpful in the mind-part of the suffering no doubt to reduce mental resistance to what is happening, and to shy away from personal identification with what happens, but of course it can’t prevent or diminish the actual side effects you have in the body themselves, for these are involuntary reflexes that go mainly beyond the mind. Learning to ignore the thoughts that come up in the mind that tries to cope with these phenomena, helps in the suffering of course. But when there is still an active mind, it only goes so far.

      When in pain from the kidney stone, my doc, after consulting my specialist) shot me with buscopan (methylbromide). It helped me relax the urinary ways and pass the stone, but it had noticeable side effects  as well. Like a fast heart rate (up to 130), and tightness in the chest that made me sort of hyperventilate in the middle of the night. Waking up with hyperventilation is not fun. Normal Pranayama meditation was not possible anymore (too late) , for I lost the ability to focus on the breath. I could count to three and then I was lost again in an unclear active mind. Fortunately, Debbie put a strong peppermint in my mouth that Pavloved me to focus on that taste and smell, and together with a guided body scan meditation that I repeated over and over again, I came through a couple of hours of severe unrest and anxiety. I didn’t dare to take more painkillers or any tranquilizer because I didn’t know how this cocktail would affect my already disturbed mind. Trying to follow the guided meditation made my mind slow down and get distracted from the bodily phenomena enough to have little moments of sleep and to hang in until the buscopan had worked out (24 hours after administering). By then, the pain was also gone and next day I could slowly walk our dog again.

      So, mind and body are one and only as such we can cope with situations like you describe. And it takes time and patience. Hang in there, the solution is already on its way, although we don’t know how. The body miraculously takes care of everything eventually, if we allow it to do so and don’t let the impatient mind interfere too much with it.

      By the  way: I suffer from nerve-twitching legs also as a result of nerve damage from too much too long fluoroquinolone antibiotics (ciproxin and it’s nephews/nieces). This periferal neuropathy is disturbing indeed, althoug in time, one grows accustomed to it and learns to sleep anyway. But occasionally (a few times a year) I suppress it with a low dose of tramadol. Also, sometimes a simple tylenol will do the same and numbs the nerves enough to allow me fall asleep.

      I am not a medical doctor, but with 58 years of cf-experience one gets the drift of creatively dealing with the body in ways that are not described in medical handbooks or medicine leaflets. One also builds the courage to experiment, even if doctors can’t recommend it. It has save my life on many occasions to go against doctors advice. Doing the same thing over and over again and expecting a different result is the definition of insanity. I am not planning on that strategy as long as my brain is still clear enough. I can’t recommend it officially though, but I always think it’s my body and I decide how to work with it. I listen carefully to all advise, but if it doesn’t work, I will work it out myself. That I can recommend of course even officially. Tramadol is not to be used continously though, because it leads to addiction and habituation. But an occasional dose might be helpful. Discuss it with your doc (family docs are often more courageous than specialists and have more holistic overview).

    • #18233
      Tim Blowfield
      Participant

      These symptoms are interesting. Prior to Reva’s diagnosis in 2009 at the age of 67 she had many years of what was diagnosed as ‘Restless Leg Syndrome’ (RLS)- tingling, pain and involuntary twitching. But it was confined to the legs much as the side effects now being seen with TK. Still gets pain in odd parts of the body / muscles.  No one knew the cause nor an effective treatment. Warm bed (Electric blanket on) did help. Pain killers not very good. Massage ????   Some suggestion was that it was symptom of a lack Magnesium. May be something in that theory as since being treated for CF with many supplements, Mg included, it has waxed & waned.  Hard to know but does fit with my thesis that electrolyte inbalance within the cells of pwCF is the cause of many symptoms that pwCF have. Would be worth a trial – TK +/- Mg

    • #18235
      Tim Blowfield
      Participant

      That should have read

      But it was NOT confined to the legs much as the side effects now being seen with TK.

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