Hello everyone, I've been on this forum a year or two ago seeking help for my mother who has been diagnosed with PBC since 2018. Since that year until now she has tried numerous of medications to treat her problematic symptom of PBC that is the pruritus (itchy skin). This pruritus has been affecting her sleep every night for years until we found that Gabapentin manufactured specifically by Ascend Labs seems to work for her. However, her local pharmacy stopped carrying it so I had to search online and found HoneyBee had it. A few months later HoneyBee decides not to carry it anymore and I am on the hunt again. I'm at my wits end for finding that medication and am at a lost as to what to do. I have called pharmacies and asked if they can do custom orders , I have asked her doctors if they can help and was told they can do nothing and it's all up to me to find the pharmacy that has it. I would really appreciate some advice or tips to help my mother, as she is only able to sleep at 6 in the morning for a couple of hours every day. We're from the U.S in California if that helps. Thank you for taking your time to read this.
Having trouble getting specific medication ... - PBC Foundation
Having trouble getting specific medication for mother.
I'm so sorry to hear that your mum is suffering. Have you tried contacting the manufacturers to ask for a distribution list?
I also use Gabapentin to help block the itch, the pharmacies here in the UK change the manufacturer and fortunately I do not have a problem. I also use 25mg Sertraline (which although it is an anti depressant it is used here in the UK for PBC itch). I also use a product called s-Adenosyl-Methionine (SaMe) which I believe has made a big impact on my overall PBC health. I was prescribed Rifampicin for the itch which I have been able to withdraw from since taking the SaMe.
Although this does not answer your question, and I hope someone in the USA will be able to help, it may give you other ideas for your mother.
Hello ButterflyEi, thanks for your reply and no worries about answering my question as any answer will help. I I never heard of s-Adensyl-Methionine, is this a supplement or a prescription?
Rimeru , it is a supplement. Co-Q10 is another supplement from which some people with PBC seem to get a good benefit. Just a thought but is it possible to contact the specific manufacturer to see where they send their supplies?
I never heard of people having problems getting gabapentin in the US, they give that drug out like candy. Call your mom's Primary care doc, not liver and see if they can find it. Good luck
Hi Sophia, my problem isn't getting just any gabapentin, it's getting it from the specific manufacturer because not all Gabapentin are the same. Different companies use different fillers and such and with the manufacturer I am looking for seems to be the only one that works for my mother. Thank you for the advice, I didn't know primary doctors would be able to do that for her.
Hi. I’m Karen and I’m from Canada. I have been on gabapentin for a few years and have no issues getting it here. Good luck 🤞🏼
Diagnosed four years ago with stage 3 PBC, I have not used that. I use 25 mg Hydroxyzine tabs 3 X daily as needed, with moderate success. That might work and be more readily available, as it has been on the market for a long time.
Good luck
Hi, have you thought about approaching the manufacturer direct and asking who they supply to? You might be able to get some that way
Sorry for the late reply, I have contacted them recently and were told they only do wholesale and that they don't know exactly themselves who carries their brand and was given a list of pharmacies that I called and none of them carry it unfortunately
That’s incredibly unhelpful of them. You’d think they’d know who their stock goes to. Wish I could help…
This may be grasping at straws but if they won’t give you details of the wholesalers they supply to, maybe try asking some of the bigger hospitals in your area (where to find it or how to contact wholesalers), or pharmaceutical schools? Maybe suggest that their students may like to do a study on why seemingly identical drugs are not always equal?
I am parent to an autistic kid and have have found that thinking way outside the box is sometimes the only way forward when you are desperate!
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