MINOCIN no longer ‘affordable’!

[RJR1066]

Hi everyone-
Thanks to roadback and everyone on this site, I have been taking brand name MINOCIN since 2/13 for systemic scleroderma and have had wonderful success. Today I was going to renew my MINOCIN prescription and was SHOCKED at how much they were going to charge me. It’s 3 times the price since April of this year. So, I’ve been reading some of the discussion threads about this very issue on this site. I am needing some practical advice:

1. I’m actually very nervous about switching to generic to make it ‘affordable’. AP has saved my life and I don’t want to ever go back to the way I was again….ever. I don’t even want to risk it.
2. I thought we couldn’t get medication from Canada anymore. But, if we can….can we still get name brand MINOCIN there? I live in MN and it would be worth the drive north. How much does it cost and how does one go about getting it in Canada?
3. Is there anyone taking this issue to our legislators? I am more than willing to have conversations and make some noise about this, but I wouldn’t know where or how to start….other than talking to the ones I know personally. What information do I give them to make it compelling and to get them moving?
4. What practical advice can you give me to still effectively treat sclero without any backsliding?
5. Do I buy some time and pay the $3000 for my 90 supply? I’m doing the M,W,F protocol.

All of this just makes me sick to my stomach…..how an old drug that paid for itself long ago is now being used to gouge people dependent upon it for good health.

Thanks for any and all advice.

Bonnie G.

[jasregadoo]

If I were you, I’d write my Senators and Representatives a letter. Tell them that you’re on this treatment, and that research has shown for your condition, brand name is preferable to generic. Then tell them the cost 3 years ago when you started on it, 3 months ago, and now, and how it is an older drug and there’s no reason for it to be expensive. Perhaps describe some of the symptoms of your disease.

Personally, I’ve only been on AP since February, and I’ve never been able to afford the name brand Minocin. I have sero-negative inflammatory arthritis, and I’m doing well on the generic. But I do sometimes wonder if I would do even better on brand name, and I have read that brand name is more effective esp for scleroderma.

If you read this article, you’ll see that Valeant was brought before congress recently to explain the price gouging that has been going on. Valeant is in Quebec, and they are the maker of brand name Minocin. I’ve never tried getting any prescriptions from Canada.

[Maz]

Hi Bonnie,

Yes, it’s a total disgrace and Richie started a thread last week on this topic…a lot of people are feeling the pinch right now and looking for a Minocin alternative. You can read the discussion here:

https://www.roadback.org/forums/topic/big-pharma-disgrace/

Some positive news is that the AMA (American Medical Association) is calling for a ban on direct-to-consumer advertising in the US to place pressure on pharmaceuticals and to hopefully reduce the rising costs of drugs. The only other country in the world who allows direct-to-consumer advertising of drugs is New Zealand.

To read full article, click link:

http://www.commondreams.org/news/2015/11/17/break-big-pharmas-stranglehold-doctors-vote-ban-drug-ads

“To that end, the policy approved Tuesday calls for convening a physician task force and launching an advocacy campaign to promote prescription drug affordability by demanding choice and competition in the pharmaceutical industry, and greater transparency in prescription drug prices and costs. It also states that the AMA will now monitor pharmaceutical company mergers and acquisitions, as well as the impact of such actions on drug prices.”

I was looking at the http://www.buylowdrugs.com site recently to see what this online Canadian pharmacy has to offer. I used to buy Stiefel pelleted brand Minocin (Canadian version of Minocin) from them and they were very reliable. Currently, they are offering Minocin MR (UK brand), which is the pelleted variety – 56 100 mg caps for $103. I used to fill out their online order form, clearly specifying the exact brand details, then Faxing the firm along with the doc’s script and payment details. Two hours later, I’d call to confirm their receipt of my order. They then mailed my order and I’d receive it within 10 days to 2 weeks. You might need to check FDA rules on this, but when I placed my orders, it was legal to import up to 3 months of medications for personal use only. Things may have changed, so calling the pharmacy to talk to them about all this ahead of time should help.

http://www.buylowdrugs.com/rx-drugs/minocin.php

Alternatively, I understand that Dr. F. in CA is prescribing Minocin yo his patients and if they can’t get brand, he advises taking a higher than usual dose of a generic formulation. I think TEVA is the preferred generic right now, but others have found success with other US produced generics.

Hope something above might help in your search, Bonnie, and so nice of you to return to visit here. It’s fantastic to hear that you have done so well on AP and completely understand your concerns about deluding backwards due to a med brand change. Another option – ask your prescribing doc to plead your case based on the fact that you have SD which can predispose you to reflux and that the pelleted brand helps to reduce this risk for you. Others have managed to get brand Minocin by playing their “reflux card.”

[Lynne G.SD]

Hi Bonnie;
Were you able to contact the people at Rheumatic.org to see if they have found a solution to this mess.Posts have been flying all last week on the topic but I never read them.

RICHIE, do you remember the cost of Lederly’s mino when we started many moons ago.Last week was my 17th aniversiry.Must be getting old as I sure don’t remember what I paid.

[Author]

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