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#15475 - 04/04/08 03:13 PM New manufacturer of Soriatane (in USA)
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
I wanted to share my recent experience with you:

I went to the pharmacy to refill my prescription of 90 10 mg capsules for a 30 day period and ran into some new problems. The pharmacist explained that Soriatane is being made by a different company and, therefore, has a different "ID number". My insurance would not cover the "new drug" without my doctor's authorization letter. Without insurance it would total about $1,600.00 US - ouch!! My doc sent in the letter and , due to a clerical error, it was still denied. This was fixed in a 2.5 hour phone call and I headed down to the pharmacy.
The Soriatane now comes in "kits" which include an aerosol can of moisterizer. I forget what it is called but it is essentially an oily product dispensed like a hair mousse. I tried it out and it actually made a difference and it is REALLY easy to apply. Of course, the can is a tiny little thing that contained one application for my arms and legs.

I was just wondering if this change has caused havouc in anyone else's routine or what you think of the moisturizer.

------------------
Sarah
35 with EHK

[This message has been edited by Sarah Helen (edited April 04, 2008).]

[This message has been edited by Sarah Helen (edited April 04, 2008).]
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#15476 - 04/04/08 09:40 PM Re: New manufacturer of Soriatane (in USA)
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Sarah
I think some of the confusion could be that the distributor of soriatane was Connetics Corporation in Palo Alto, Calif. Connetics was purchased by Stiefel Corporation located in Florida and has taken over the distribution of soriatane. You can access information by typing in www.connetics.com or www.stiefel.com and it will automatically take you to the Stiefel Corp website. For specific information on soriatane, click on the products section of the site and it will list all the products Stiefel Corp distributes.Dont you just love the pitfalls of dealing with insurance companies, pharmacies, and orders? You would think in our computerized fast paced technical world we could fix those types of problems in nanoseconds. Take care Sarah and thank you for your post.
Sincerely,
Les
_________________________
Les Avakian

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#15477 - 05/28/08 06:16 PM Re: New manufacturer of Soriatane (in USA)
AngV3 Offline
Member

Registered: 12/06/06
Posts: 16
Loc: Sartell, MN
I took my new rx for soriatane in to my regular pharmacy and they told me it could only be filled at Walgreens.... so I went there and they went on to tell me that my co-pay would be $266!!! I have really good insurance and the most I have ever paid for a rx is $35 but mostly $10. I am trying to switch from Accutane to the Soriatane and I only paid $10 for a months supply of Accutane. they said that the Soriatane is a very "new drug" so thats why it costs so much. I told them that it was not new, but they could not help me. Is the $266 normal for a months supply with insurance? Just wondering if I am fighting a losing battle or if they are just messed up due to the issue that Sarah previously wrote about a new distributor.
_________________________
Angela

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#23557 - 12/30/08 12:25 PM Re: New manufacturer of Soriatane (in USA) [Re: AngV3]
luckelizard Offline
Member

Registered: 02/26/03
Posts: 190
Loc: Corpus Christi, TX, USA
I was on accutane as a teen and i didn't like all the things that went along with it.. ie.. diet, blood work, not being in sunlight... etc... not that im 27 i have a new derm and he is wanting to put me on soriatane.. I have filled the prescriptions bc hubby is in the Navy i don't have to pay anything.. but im too scared to take it.. I had some hair lose and other issues.. i can't gain weight, my cholesteral is high, im losing bone density. I just don't want to risk causing any more damage than necessary..

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#25186 - 09/23/09 10:21 PM Re: New manufacturer of Soriatane (in USA) [Re: Sarah Helen]
Vicky Offline
New member

Registered: 02/25/09
Posts: 4
Loc: Houston, TX
Hi Sara, I would love to have your opinion regarding soriatane. My daughter, who is 22 years old, is considering going back to soriatane after stopping it for 1 1/2 years, due to peripheral neuropathy. I would like to know how long have you been using this medication and what treatment would you use if you were considering to have a child. I know you have to stop using soriatane for 3 years before getting pregnant. I would love to know an alternative medicine to avoid the side effects. Thank you very much
Vicky
_________________________
Ana Rosa

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#25759 - 01/20/10 08:04 AM Re: New manufacturer of Soriatane (in USA) [Re: Sarah Helen]
snackmom Offline
Member

Registered: 01/29/08
Posts: 39
Loc: mechanicsburg, PA, USA
I think this has finally become an issue for us! My husband has been taking Soriatane for years. Last year his derm increased the dosage for him to 35mg. Since the manufacturer does not make a 35mg he takes a 25 and a 10 daily. When we went in to refill last week we were told that they could no longer get it from their distributor. The pharmacist suggested we talk to the derm. Well neither one of these individuals was of assisstance. So my question to all of you- how in the world do we get the medicine we need when no one seems to know what is going on? cry

Thanks for your help!

Christine

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#25774 - 01/20/10 06:06 PM Re: New manufacturer of Soriatane (in USA) [Re: snackmom]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Christine
Check my post above concerning Connetics Corporation and Stiefel Laboratories. Stiefel purchased Connetics Corporation (the distributor of Soriatane in the U.S.)a few years ago. Type in www.stiefel.com and it will bring up their website. In the website you can click on customer service or their telephone number is (305)443-3800. Go to the source of your problem and get the answers you need. I have communicated with their people and they seem to be very helpful people. Take care Christine and keep us informed on your progress.
Sincerely,
Les

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#25786 - 01/22/10 07:23 PM Re: New manufacturer of Soriatane (in USA) [Re: Les Avakian]
snackmom Offline
Member

Registered: 01/29/08
Posts: 39
Loc: mechanicsburg, PA, USA
Hi Les- thanks for the redirection!

I called Stiefel today and spoke with a very nice woman in patient assistance. I explained the situation and she was very helpful. She basically said that the pharmacist needs to get off his lazy butt and do some work (my words not hers :)).

They are still making the medication in 25mg dosage, but it is no longer available as a kit as Sarah Helen explained earlier. However instead of the pharmacy placing the order for it online, they need to make a phone call to their own supplier. She gave me an NDC number to provide the pharmacist.

When I called the pharmacy I felt like I was talking to my 5 year old and telling step by step how to do his job. So now I wait to hear back from them. Keeping my fingers crossed that this solved the problem.

Thanks for the help
Christine

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#25905 - 02/23/10 09:07 PM Re: New manufacturer of Soriatane (in USA) [Re: snackmom]
ashley Offline
Member

Registered: 10/09/08
Posts: 15
Is this medicine for Ichthyosis? Because every doctor I've asked keeps telling me there is no pill form of treatment.. So I will be awfully bummed if I missed out on a pill form and that I was lied to.

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#25924 - 02/24/10 11:03 PM Re: New manufacturer of Soriatane (in USA) [Re: ashley]
snackmom Offline
Member

Registered: 01/29/08
Posts: 39
Loc: mechanicsburg, PA, USA
Soriatane is a prescription drug for the treatment of psoriasis. There are a lot of risks involved with this medicine especially for women of childbearing years. From what I understand, it is a restricted drug for these women. My husband has EHK and has been on Soriatane for a number of years, but I do not believe it would work for all forms of ichthyosis. We also have been told there is no pill treatment for ichthyosis and in all of our research believe this to be true. So we jsut keep hoping that one day science and research will make a remarkable breakthrough and it will change the world as our family knows it!

Good Luck!
Christine

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#26070 - 03/25/10 06:19 PM Re: New manufacturer of Soriatane (in USA) [Re: snackmom]
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
I was on soriatane for several months. I've got EHK and had to sign all sorts of forms before getting on it. my chosen form of birth control was the depo shot and even though I hated the shot, Soriatane made my skin so much better. I got pregnant at the end of the 3 year waiting period that is required once you get off the med. It used to be something like 6 years!

There IS a topical medication that can be used that gives similar effects to soriatane but its only to be used in the worst spots like under the arms, in the elbow bends, neck, etc. It's called Tazorac and it's the %1 formulation I believe.

Tazorac worked wonderfully when I used it and it really made my underarms and elbows very clear. The rest of my skin I just scrubbed up at bathtime.
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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#26071 - 03/25/10 06:22 PM Re: New manufacturer of Soriatane (in USA) [Re: snackmom]
Martika Offline
Member

Registered: 04/15/05
Posts: 78
Loc: Southern California
also~
Soriatane has WAY less severe side effects than accutane!

If I was to ever get on it again I'd chose soriatane and I'm seriously considering getting on it when I'm done having babies. (the plan is for us to be done at 30yrs old)
_________________________
Mommy to TJ (EHK, T21, 8/14. VSD/ASD repair 11/4) Wife to WONDERFUL Husband and daddy Carlos, and Baby Mason Born 12/9/09

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#27260 - 12/17/10 07:44 PM Re: New manufacturer of Soriatane (in USA) [Re: snackmom]
patricia123 Offline
Member

Registered: 12/17/10
Posts: 6
This is my 1st post here. I saw a tv show on 12/15/10 called My Skin is Killing Me. On the show, there was a 22 year old man with Lamellar Ichthyosis. He went to the Guangzhou Institute of Dermatology in China. He took some tests. They showed the medicine he was prescribed. It was in a blue and white box. I couldn't read the name of the medicine because it was written in chinese. I have Lamellar Ichthyosis and I'm trying to find out the name of the medicine. Is it Soriatane? Did anyone see the show? It was on TLC this past Wednesday at 9:00 est and then again at 1:00am est. I'd sure appreciate any help.

Thanks

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#27261 - 12/18/10 01:19 AM Re: New manufacturer of Soriatane (in USA) [Re: patricia123]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Patricia,
Welcome to our ichthyosis bulletin board. I also watched the show on the TLC channel called My Skin Is Killing Me.The name of the man from Chengjiang, China is Sun Cheng. Indirectly we have communicated with him, and expressed he is not alone in his experiences with ichthyosis. I would imagine the pill he was taking was a retinoid possibly Soriatane (Neotigason outside the U.S.) or possibly Accutane. Possibly our ichthyosis friends who take the retinoids could tell us exactly what pill Sun Cheng is using. Patricia, also check out our FIRST foundation website at:www.firstskinfoundation.org. Take care Patricia.
Sincerely,
Les
_________________________
Les Avakian

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#27262 - 12/18/10 08:51 AM Re: New manufacturer of Soriatane (in USA) [Re: Les Avakian]
patricia123 Offline
Member

Registered: 12/17/10
Posts: 6
Thanks for the info Les. Hopefully somebody knows something.

Patricia

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#28616 - 09/07/12 04:12 PM Re: New manufacturer of Soriatane (in USA) [Re: patricia123]
Anonymous
Unregistered


Ive seen th video on youtube. You can pause it when the box appears, it actually says Acitretin capsules in english smile

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#28617 - 09/07/12 08:40 PM Re: New manufacturer of Soriatane (in USA) [Re: Sarah Helen]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Anonymous
Thank you for the information on Acitretin given to Sun Cheng in the video.
_________________________
Les Avakian

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#28623 - 09/12/12 11:02 AM Re: New manufacturer of Soriatane (in USA) [Re: Sarah Helen]
Anonymous
Unregistered


my dad has the dreaful itchyness disease called PRP (Pityriasis Rubra Pilaris). He has been taking Soriatane 25mg for about 2 years. It helps with the itchyness but he has other side effects: extreme thirst, and painful neuropathic condition in his lower extermedies, below the knee onward. Soriatane is very expensive if you don't have insurance. He usually pay $15/pill, ouch!! I found a certified (they claimed) canada drug company that carry this medicine for about $2.40/pill, it is http://www.onlinecanadianpharmacy.com, shipping is free for new customer. Wondering if anyone has any experience dealing with Canada drug. I want to help my dad to lower the cost, but never order from Canada before. I would appreciate any help on this.

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#28755 - 01/05/13 08:16 AM Re: New manufacturer of Soriatane (in USA) [Re: Sarah Helen]
Adrienne123 Offline
New member

Registered: 01/05/13
Posts: 1
Omg, I am also helping my dad and your post strucked me that we shared a lot in common. My dad also have PRP, he has been taking Soriatane for about 1.5 years. This medicine is very expensive even with insurance, we ended up going with www.canadadrugs.com. It is a certified online pharmacy, we ordered the Soriatane and other medication and have good experience so far.

With Soriatane, my dad's skin is mostly cleared, but he is too has extreme neuropathy pain in the lower legs. His dermatologist does not think that it relates to Soriatane. We went to see many other specialists and nothing help. I am doubting the derm now and think it is related. How did your dad deal with the neuropathic pains? Will the pain go away if he stop taking the Soriatane? I am afraid to take my dad off the medicine and the PRP would come back. I would very much appreciate any help on this.

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