|Topic Review (Newest First)|
|07-05-2016 10:23 AM|
|rjohnsontx||It looks like you've got this covered, but we get Penicillamine (the generic version of Cupremine) from Wedgewood Pharmacy in NJ. They have to compound it, but it usually comes in about a week. They are super reliable and very customer friendly. I recommend them highly.|
|06-25-2016 11:23 PM|
Update: we had a marathon vet appointment today as we tried to figure out a new treatment plan for Soter. Then spent the remainder of the day on the phone to pharmacies. The best hope is still the Cuprimine, so we're going to keep trying to find him enough pills for the full six month de-coppering therapy. His copper levels were/are dangerously high and 2 months just isn't long enough for them to be at safer levels. |
dart, thank you for all of the great info! It was a HUGE help! The vet isn't comfortable using the Trientine as a de-coppering medication for Soter for a couple of reasons. It is known to cause extreme nausea and Soter already has stomach issues and the dose required for actual removal of excess copper runs a very real risk of renal failure.
However, our new plan is to get him through the 6 months and then use the Trientine as maintenance therapy - the dose for that is significantly lower and should be much safer.
The other drugs you mentioned have not been used in dogs - at least not as far as we've been able to find so unfortunately we can't use them either as we don't know if they would be safe.
You were right about the compounding pharmacies! We have a line on one that may still be able to make generic d-penicillamine. Another vet that our vet knows and trusts has used this particular pharmacy quite a bit and trysts both them and their suppliers. We'll find out on Monday how much they have left and when I call to pay for it, I will ask about the U.S.A. third party testing
I couldn't reach Diamondback today but I'll try tomorrow and again on Monday. Dr. Fosters & Smith didn't have it either
We also may have another option - apparently some hospitals may still have the drug in stock but it may be past the expiration date. They can't give it to humans but if it's been properly stored and is not too far past the expiration date, they can release it for use in a dog. The pharmacists we spoke to (several different ones) all agree that as long as those 2 conditions are met, it would be safe and while maybe not quite as effective, certainly better then nothing.
Soter has already had 60 full days of medication, we were able to find another 40 days worth today plus the 35 days that Gretchen/Jane Smith found. So now we're up to 135 days and we need 180 days. We're on the hunt for 90 more pills.
Plan B scares the day lights out of me - if we can't find the pills then the vet wants to cut him back to strictly maintenance therapy dose to make the pills last as long as we can, go back to the tea, ginseng and acupuncture and try to reduce his copper intake even further. So basically enter into a holding pattern until the production starts up again. It may work but he won't actually get better and if he starts to get sicker than I don't know where we'll go from there.
I feel more hopeful today, the panic is subsiding somewhat but I'm not going to be able to settle down until I know we have enough medication. My brain keeps going at 100 miles an hour trying to think of something else we can do, somewhere else I can check. I actually jumped up in the middle of the night last night because I thought I had missed a pharmacy, I grabbed the phone then realized it was 3 am, I must have been dreaming about it.
Most of the pharmacies are closed tomorrow but I'll still try and see if I can find some and I'll continue again on Monday. There has to be 90 more pills out there somewhere!
Thank you everyone for all your help! Gretchen_Red would you mind thanking Jane Smith for me? I'm am so grateful to all of you, the Doberman community is a strong one and the support is amazing. We'll get Soter through this somehow!
|06-24-2016 10:07 PM|
The advice came from Jane Smith in Canada I BS you not!
|06-24-2016 08:35 PM|
|4x4bike ped||Good job Karen!|
|06-24-2016 08:25 PM|
|Rosemary||Check with Drs. Foster & Smith. Prescription Products: About the Drs. Foster & Smith Pharmacy It's not on their list, but you can ask if they could get it. They used to do compounding. Don't know if they still do.|
|06-24-2016 07:49 PM|
You might try a compounding pharmacy. It would be a generic version of the drug though and compounded at a dose that is not currently available in the brand name form. It would be important to ask if the pharmacy does 3rd party testing of drug they compound and not rely on a certificate of quality from overseas. If they did USA third party testing on overseas supplied drug, I would be fine with that. |
Roadrunner pharmacy in AZ does third party USA testing on overseas supply according to their website. You might try them. Diamondback in AZ and Wedgewood in NJ show the Penicillamine generic. Google search Penicillamine and compounding
Are there other chelating drugs that can be used? Doing a crash course google search here and not comprehensive, but what about Trientine Dihydrochloride, Depen, Syprine, Galzin, if Cuprimine is not available?
Contact Wilson disease.org as this disease uses Cuprimine and those mentioned above for treatment of copper storage and may be able to provide assistance to source the drug or equivalent
|06-24-2016 07:43 PM|
GRETCHEN YOU ARE MY HERO!!!!! |
70 pills paid for and on the way from Cloverdale Pharmacy! Unfortunately they are unable to get anymore as they are getting the same message as everywhere else - the manufacture has suspended production but at least we have 70 more pills! That's 35 more days!
I think this is the way it's going to go, we need to find any pharmacies that have left over pills in stock and buy those. If we can get him enough to last until the end of October then he goes for his follow up biopsy. If his copper level are significantly reduced then he can drop down to 1 pill every 2 days. But right now he has to be on 2 pills a day to get the copper levels down to where they're not life threatening anymore.
Oh my god what would I do without this site and all you guys thank god for DT!
|06-24-2016 07:17 PM|
|Gretchen_Red|| Cloverdale Pharmasave | Natural Pharmacy for People and Ani |
If you can't get it off this website I know someone who can get it if you're not on Facebook
|06-24-2016 06:52 PM|
If you have a good relationship with your primary health care physician, thats someone I would contact. When our boy Butcher (RIP) was diagnosed with DCM, we got his meds though our doctor as it was cheaper. Not really kosher, but whatever... |
I trust that you will find a med source soon. Best of lock.
|06-24-2016 06:37 PM|
|Gretchen_Red||Are you on FB?|
|06-24-2016 06:03 PM|
|Dobe_Mom||Obey the Dobies - we used to give this to Jossie for her copper storage disease. My bottle is Penicillamine 300 mg capsules (now expired). Our supplier was Diamondback Drugs (866)646-2223 7631 E. Indian School Rd Scottsdale, Arizona 85251|
|06-24-2016 05:55 PM|
|Gretchen_Red||Someone online suggested phenobarbital if it's life or death. I don't know anything I'm just passing along the advice.|
|06-24-2016 05:53 PM|
|wade.wilson||EDIT: if something like that will work I could ask a friend whose a doctor and see if they can do anything??|
|06-24-2016 05:47 PM|
|wade.wilson|| Penicillamine (Depen®, Cuprimine®) |
I'm sure you have most likely already seen this page in the link above?
I don't really know much about medications, however it was saying that Penicillamine (depen, cuprimine) was registered for human use only. So could that possibly mean you could get a perception from a doctor's office/ pharmacy and use it for Soter?
|06-24-2016 05:21 PM|
|Gretchen_Red||Maybe the Singapore is worth a shot if worse comes to worse?|
|06-24-2016 05:16 PM|
|Gretchen_Red||Pet place.com and abcpetmeds.com try those!|
|06-24-2016 05:14 PM|
I just got off the phone with ABC pet meds, much easier calling. They don't actually have anything but can get a generic version out of India. I just don't know what to do, you hear so many horror stories about fake medications and wrong medications. I read somewhere that there is no generic version! |
I'm panicking and can't think straight right now. Someone tell me what to do!
|06-24-2016 05:12 PM|
Not sure how helpful any of it is but I found these....Hoping so much for you to find some and keep your boy healthy! |
Buy Cuprimine (D-Penicillamine) 250mg
Cuprimine 250 mg Price Comparisons - Online Pharmacies and Discount Coupons
|06-24-2016 05:09 PM|
|06-24-2016 05:06 PM|
|Gretchen_Red||I just reached out to a few FB groups that I trust! Fingers crossed!|
|06-24-2016 05:05 PM|
|ObeytheDobies||I now finally understand how people get scammed. I never did before but now I do. The one company I called said they could get this drug out of India and wanted my bank account info. I'm just desperate enough that for a moment I actually considered it|
|06-24-2016 05:02 PM|
Formulation:Alliance Pharma" But, I trust you better than me, as I know nothing about these meds. I would call my vet for you, but she's on a temporary leave right now. I'd check with the oncologist that we see, but for Indy's meds, they are charging 4x - 10x times more than any other place. That said, I can ask if you'd like; their overcharging has just left me feeling quite bitter. Just let me know.
When I look at goodrx (what I use, as I have a high deductible plan), it shows 6 capsules for $1,577.75 - and I'm guessing that's completely out of the question?
|06-24-2016 05:01 PM|
|Gretchen_Red||My vet had nothing sorry.|
|06-24-2016 04:54 PM|
Still desperately trying to find some - no luck yet |
Eighmie, Online prescription drugs.com has a generic version from Singapore, I don't think I can trust that and BC pet meds has liquid Cuprimine for removing copper from aquarium water
Thank you so much for looking for me, Gretchen I'll keep my fingers, eyes and toes crossed
I think the best bet is going to be human pharmacies
|06-24-2016 04:37 PM|
|Gretchen_Red||I emailed my vet and told them I'd pay to over night it if they have it! Then asked for leads if they didn't. Let's cross our fingers!|
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