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Skyclarys
I received an email saying that this medication is the first FDA approved medication available to treat FA. Has anyone tried it.
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41 Replies
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It’s not available yet. And I won’t be on it because Cigna will not
help pay the $400,000/year cost. And Reata said my income (actually my husband’s) is too high.
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I could be wrong but I think it’s available now at a ridiculous price. GoodRX has 90 capsules averagely priced at $38,000, from different pharmacies. If it is available there must be a way for patients to get a hold of medication.
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I have been taking Skyclarys for 2 weeks. The drug was FDA approved 2/28/23. I went to my neurologist early March to start the process & paperwork needed to get the medication. The mfg Reata has a website explaining the process. It is only available through their specialty pharmacy, Biologics by mail. The cost is high, $370,000/yr. My ins, a medadvantage plan approved with copay of $2906.00/mo. Reata’s pa program approved copay for 0 cost.
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I have Medicare with supplemental insurance through Blue Cross. they approved the prescription but the copay was still really high. I applied for help with the copay from Reata and they covered it 100%. I started taking the medication July 9th three 50 mg pills once a day. as of this writing, I have been on them 16 days.
the program pays the copay if insurance is okay and you have to be denied because of income too much for security help. they said qualification was $150,000 or less for a joint return.
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Unfortunately, this is the start of the poker game between Reata and the insurance companies on the Skyclaris price structure. If too few FA patients can afford these outrageous copays and the insurance companies balk, then Reata won’t recover their research costs quickly enough and they will reduce the costs. $150K AGI seems like a very low initial Reata hurdle in order to get copay assistance. In the meantime, FA patients go without. Tragic. My son is very late-stage FA and his severe cardiomyopathy will not allow him to take Skyclaris. Our prayers to go out to all the younger patients who need access.
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My wife is late stage , unable to do even simple tasks and has congestive heart failure….a friend has serious heart problems with a pace maker …..both are taking it with no adverse side effects so far …..actually last several days I had to cut out my wife’s heart meds because her BP and heart rate has come down and stabilized. She used to have build up of fluid on her heart to the point her feet would swell a good bit….her feet are back to normal now and no sign of fluid build up . Only side effect ive noticed is she is itching more, not from rash, but I believe it is her nerves starting to fire again. Time will tell. So far though it is very promising.
Obviously each person is going to react differently and have to pay very close attention but it’s working quite well for my wife and our friend .
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Clester, my son is very late-stage FA with a cardiac ejection fraction of less than 20%. His neurologist and cardiologist are reluctant to prescribe Skyclarys due to the elevated BNP enzyme levels seen in the drug trial. BNP indicates increased cardiac stress. Also, he was rejected for the drug trial due to his advanced cardiomyopathy. Were these concerns ever raised with your wife’s prescription of Skyclarys? I’m just searching for clarity on whether or not to get Skyclarys for him. Thanks
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why is my post still awaiting moderation?
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Wife has started it …Medicare pays for it with about a $5 deductible ….only 2 weeks and already she has noticable improvements in her speach.
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Sounds very promising. I wish you both all the best! I hope the improvements keep coming.
I speak with my doctor on Friday.
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Update….starting 2nd month…..$0 Co pay this month through medicare.
Feeling Is returning to her feet and she can move her legs, which she hasn’t been able to do in several years.
Her speach has cleared up enough she was able to speak to her sister on the phone for the first time in over 5 years…..although it is better mainly in the mornings so far…..imagine it will take time to gain strength and endurance.
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First symptoms 50 years ago, I am also late stage. Add diabetus it seems end is near.
Iam 21 days on. Only ‘itchy’ only side effect.
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Late stage diagnosis (44, now 48). I am on my third day, no noticeable side effects or improvements- it’s early. I will keep this updated as I progress with treatment.
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I have been using a wheelchair for about 20 years. Has anyone found progress with the medication where walking unaided is possible?
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I started taking omaveloxolone (Skyclarys) on July 3rd. Because of United Healthcare and Reata’s REACH program, I pay nothing. Maybe 15-20 days after daily use, my wife believes my speech is improving.
I’m 42, and I’ve been using a wheelchair full-time since I was 28.
My son (15) and I have been running our own experiment since day 1 to quantify what functions measurably improve. It involves 5 activities. We record data every 21 days.
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my speech improved the first day. no idea if it’s causal.
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I start my second 30 days tomorrow. My doctor believes it takes 18 weeks to notice any improvements. I noticed the first two weeks I had extremely sore arm muscles. I do not know if it was a side effect or a coincidence. It felt like nails going through my biceps. I still drive but I usually quit after noon due to shaking. In the last few weeks I notice I am a lot more steady in the afternoon.
I am on Medicare and Tri-Care For Life, (Retired Military). Fingers crossed for next month.
Patrick
Apache Junction Arizona-
Thank you for your service! Hoping for all the best for you from this medication. I’m still waiting to get started.
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Also vet, Vietnam, I also experienced arm muscle pain, but improving 3 weeks on.
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Received for August!
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- I am late onset, 1st symptoms @ 40, misdiag of sca @ 51.fa diag at 74 last year. I am on month 2 of Skyclarys. I have more energy & clearer speech according to my husband. I’d hope it becomes available to all with fa worldwide.
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How is everyone doing with Skyclarys? I’m still trying to get Cigna to cover it. Reata was no help.
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I’m still struggling to find a way to get it. They shouldn’t make it so difficult for people who need it to get.
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Anyone else have elevated liver enzymes after beginning Skyclarys? Mine became elevated after 1 month, so I stopped it. I will retest in 30 days, and then decide if I should resume taking a reduced dose.
I did not notice any improvement.
I have a Medicare Advantage plan through United Healthcare with a copay of $47/month
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my enzymes went up the first month, came back down the 2nd month. not yet noticing benefits but it is really early.
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I started my second month today also got blood work done today. I think it can elevate your liver enzymes and cholesterol. Who took you off of it?
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Denied again! This time because I use a wheelchair. My doctor will appeal again.
Oh, I heard the same as janee…enzymes will go up-
that’s bs. i’ve used a wheelchair for 20 years and was approved immediately.
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I’ve used a wheelchair for 10 years and I was approved
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Liver enzymes went way up 1st month. Sent results in to Dr Lynch and he said that’s normal and they should level out. So continued to take them. At the 2nd month bloodwork they were back to normal. See what 3rd month results are. Scheduled to take them next week.
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Did your cholesterol go up while taking it too?
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She hasn’t had cholesterol checked so don’t know.
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Update…wife is still improving although more slowly….had her first liver function test and liver function was normal….cholesterol is normal…only thing Dr found was her protein levels were low so we have added more high protein foods…which is great because we both love a good steak or our fish we catch at the lake…lol
Side note …those interested and don’t know…..you can get electric fishing poles…I made my wife’s , she has a large button that sits on her lap that she presses to operate the reel. She has pulled in a 42 inch long catfish with it. It is going on 8 years old and still works like new . Plugs into a power port( like in a car ) I mounted on her power wheelchair which she also uses for charging her phone or kindle as well as a 12 volt electric blanket when it’s really cold out…..on low setting the batteries will last several hours.
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I don’t mean to sound rude but I can’t think of another way to ask but, is your wife ambulatory? Cigna denied my claim because I use a wheelchair. No heart problems or diabetes.
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Someone has a notice about the approvation and distribution in Europe? Thanks
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Wife has been in a wheelchair for over 26 years. She is near totally dependant, including she can’t feed herself.
She has just started moving her legs , although very minimally , that she hasn’t been able to do for over 5 years.
Makes no sense for an insurance company that would decline it since it is the only drug there is for treating FA.
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My husband has been on Skyclaris since November 1st. He got his lab results today and his cholesterol and liver enzymes were off the charts. They are taking him down from three pills a day to one. If his labs don’t improve in two weeks, they are taking him off it completely. To say he is disappointed is an understatement.
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Mine went up the first month then stabilised by the third month it was good
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My husband started taking Skyclaris last August. A few weeks ago is cholesterol came back elevated, so we’re making dietary adjustments. If that doesn’t help, he’s going to reduce the dosage.
On another note, a woman at church yesterday told him that his gait looked smoother and less teetering.
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Has anyone in UK or Dubai managed to get Skyclarys prescribed. If yes, how can one get medicine in UK/Dubai?
Thanks
Sunil
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Good evening, everyone. My son (21 years old) has Friedreich’s Ataxia. We currently live in Germany. He started taking Skyclarys on June 9, 2024. His liver function tests and cholesterol levels are very high; we even took a two-week break from the medication. We have resumed taking it now and are awaiting the next round of tests. I’m worried they might stop the treatment due to these levels. Has anyone been told to stop taking it? Has anyone been on it for a long time, and if so, has there been any improvement? My doctor tells me not to expect much…
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