Where can i find 1% lacosamide drops? Please help

[Fitch]

I have used 1% lacosmide drops in my sclerals and they have brought me pain relief. Leiters compounding pharmacy used to make them for me but they are not making anymore. I just need to find a U.S. compounding pharmacy. Leiters has no referrals for me and Dr. Rosenthal did not know either. Any help would be greatly appreciated. Thanks!

[Hokucat]

Hi Fitch. Did you ever find another compounding pharmacy that can make these drops?

FYI, I contacted a couple compounding pharmacies I used to go to for autologous serum tears, to ask whether they could make lacosamide drops. Neither could, however one pharmacist told me lacosamide is not even an available drug he can order. Online it looks like only the brand name Vimpat has been available so far...a generic version was approved last year but not yet released for sale. Am guessing brand names are not supposed to be compounded. Hopefully once the generic is available, these drops will be readily available.

[Fitch]

Thanks for your help and info

[Neerav1989]

Fitch, I would really need an update on your condition. Is 1% lacosamide still available in US. I live in India and lacosamide is not available. What else have you tried that worked in your case ? I have also sent you a private message

[ltree]

I am looking for lacosamide drops too, currently living in Canada near Toronto.

After more browsing on the internet, I came across two other drugs that are used similarly in a study, with favourable results. Has anyone heard about these? They are ropivacaine and bupivacaine. I am looking to see if I can obtain them now that it appears lacosamide is not quite unavailable. It looks like optometrists can prescribe bupivacaine where I am:

http://www.hprac.org/en/projects/res...ubmission2.pdf

More info:

**https://www.aao.org/eyenet/article/a...eal-neuropathy
**http://bostoneyepain.org/patients-as-teachers/
http://australiandryeye.webs.com/app...ve-as-a-razor-

... right scleral lens was medicated with sterile, non-preserved bupivacaine 0.004%. Moments after its open label insertion she reported total resolution of pain and photophobia in that eye


...Subsequent daily treatment of both corneas with anarbitrarily chosen mixture of ropivacaine 0.005% and lacosamide 0.05% in the scleral lens chambers strikingly suppressed symptoms of photosensitivity, DELP and hypersensitivity to fumes. This analgesic effect continued for 2 years at which time the drugs in the scleral lenses were deliberately discontinued. Pain and photophobia returned to its previous levels within 2 weeks. Reinstitution of the treatment again suppressed the neuropathic symptoms.

[Hokucat]

ltree (and Neerav and Fitch), I came across this fairly recent article/case on successfully using bupivacaine and fentanyl as treatment for corneal neuropathy, but administered via an implanted intrathecal catheter, not eye drops. It might have been referred to in one of the articles you posted above, ltree, but at quick glance did not see it, so wanted to pass it along. Good to know there is continued promising research to help relieve corneal neuralgia. Of course, if you are able to get bupivacaine eye drops and it is effective, that would be much more convenient, and likely more cost effective with less side effects, since it would isolate application directly to the eye.

https://academic.oup.com/painmedicin...uropathic-Pain

[ltree]

ltree (and Neerav and Fitch), I came across this fairly recent article/case on successfully using bupivacaine and fentanyl as treatment for corneal neuropathy, but administered via an implanted intrathecal catheter, not eye drops. It might have been referred to in one of the articles you posted above, ltree, but at quick glance did not see it, so wanted to pass it along. Good to know there is continued promising research to help relieve corneal neuralgia. Of course, if you are able to get bupivacaine eye drops and it is effective, that would be much more convenient, and likely more cost effective with less side effects, since it would isolate application directly to the eye.

https://academic.oup.com/painmedicin...uropathic-Pain

Thanks Hokucat. Intrathecal sounds scary but for something as terrible as corneal neuropathic pain, if it brings relief that is what matters. Also the more research done on corneal neuropathy, the more we know about the condition and what helps.

The studies I read are about applying to the eyes by including the drug in the scleral lens solution. To me I feel more comfortable with topical over systemic at this stage, knowing by experience that my body gets hit badly by medication in general. For example, I had taken pregabalin to control the photosensitivity, and it helps a tiny bit on and off, but I feel so drugged I could not think straight and form my sentences properly.

Also, yesterday I asked my current ophthalmologist about these drugs and whether he can write a prescription. First, he confirmed that lacosamide cannot be obtained at this point, and he is not comfortable prescribing bupivacaine or ropivacaine, because there is no current protocol established...

It is frustrating. At this point I am so ready to try it at my own risk - I am only half as functional with quality of life drastically reduced, being restricted to keeping my eyes closed most of the time and homebound when I do not absolutely have to use them (I drive, cook, work etc. with one eye closed and the other mostly closed!!). It is frustrating when we finally find some light at the end of the tunnel, and then learn that it is out of reach.

I know there are online pharmacies somewhere that may be able to get me a supply, and I am going to look there next.. If anyone has a clue, please PM me.

[Hokucat]

I totally agree if you can apply these solutions topically via sclerals and it is effective, that is preferable and less invasive than intrathecal catheter.

I found another article on this same case where the doctors used bupivacaine intrathecal, which has their email addresses listed at the bottom. Perhaps you can contact them at some point to see if they are aware of anyone prescribing bupivacaine drops for use in sclerals for corneal neuropathy, or other potential options they may have, you never know.

https://www.eyeworld.org/new-approac...uropathic-pain

[Neerav1989]

ltree (and Neerav and Fitch), I came across this fairly recent article/case on successfully using bupivacaine and fentanyl as treatment for corneal neuropathy, but administered via an implanted intrathecal catheter, not eye drops. It might have been referred to in one of the articles you posted above, ltree, but at quick glance did not see it, so wanted to pass it along. Good to know there is continued promising research to help relieve corneal neuralgia. Of course, if you are able to get bupivacaine eye drops and it is effective, that would be much more convenient, and likely more cost effective with less side effects, since it would isolate application directly to the eye.

https://academic.oup.com/painmedicin...uropathic-Pain

Thanks Hokucat. I did discuss this with my Pain specialist. he said he is aware about the same. But he said hat it has it's own complications and only used as a last resort. Plus it costs in lacs. Sounds scary to me as well.

It is good to know that there is some research being carried out on corneal neuralgia. But i don't think more doctors will be willing to do research as cases of corneal neuralgia seems to be very very few. 80-90% doctors in India are not even aware about the condition.

Meanwhile my life is still quite miserable. I have almost given up now. I was once working as a software engineer and now I am working as a receptionist (attending calls all day) for last 2 years. That's how much LASIK has destroyed my life. I am also having cognitive impairment now which seems to be common among patients with chronic pain (as mentioned by Dr Rosenthal in his articles).

[Hokucat]

ltree, I know you say you are willing to try to get these bupivacaine or ropivacaine drops at your own risk at this point, but there's good reason your current ophthalmologist will not prescribe them. I've been reading these drops typically used as an anaesthetic can cause damage to the cornea and corneal epithelium, if used longer term. One of my friends has epithelium and cornea damage, and can no longer see out of that eye and may need a corneal transplant, so don't want that to happen to you.

https://patient.info/doctor/ocular-local-anaesthetics

Neerav, I'm sorry things are still difficult. I will be keeping a look out for any updates on treatment for corneal neuralgia, along with you, ltree, Fitch, and others in this forum.

[MGD1701]

Hi Hokucat

Corneal epithelium:
My dr told me 3 years ago that my corneal epithelium (due to RC erosion - assuming I got dry eyes from RCE?) not good but no details.
Other doctors did not say anything about it but they did tell me my sight and cornea have no damage. Are there something I should ask - just to make sure. Will visit dr today.

Thanks!

[Hokucat]

Hi MGD1701. I don't know much about the epithelium, but know that mines was damaged when I had severe dry eyes. The epithelium is the outermost layer of the cornea. It helps protect the eye from outside factors, transfers needed nutrients from tears to the other layers of the cornea, and also has nerve endings. Perhaps that's why my eyes always hurt no matter where I was, and were bothered even more by wind and A/C. My eye doctors say my epithelium is smooth now like it's supposed to be vs. previously like sandpaper, so am guessing that it healing helped me feel better.

https://nei.nih.gov/health/cornealdisease

When you see your doctor today, ask about the state of your epithelium, and details of what the damage is (scratches, like sandpaper, etc.). It would be good to know more about this.

[MGD1701]

Thanks Hokucat for your prompt reply and the useful link.

I think my epithelium was also damaged due to dry eye/RCE. My dr just gave me wrong drops, no lipi drops, compress, lidhygiene etc.

How did you heal it, by diet will do? I did have PTK laser to fix the RCE issue. I no longer suffer any pain any more (for 6 months now).

Thanks again!

[Hokucat]

Sure, MGD1701, no problem. After I started drinking the lemon/tea after my fifth and last probing, that's when my eyes started feeling better consistently every day. So it could have been from the antioxidants and anti-inflammatory properties of the lemon/tea, and/or the fact that I was able to wear my sclerals again all day long after my eyes continued to get better. The saline in the sclerals likely protected my epithelium from further damage, and may also have provided an environment that encouraged healing.

Perhaps your epithelium is also healed now, since your eyes have been feeling better too. I'd be interested to hear what your doctor says.

[Neerav1989]

ltree, I know you say you are willing to try to get these bupivacaine or ropivacaine drops at your own risk at this point, but there's good reason your current ophthalmologist will not prescribe them. I've been reading these drops typically used as an anaesthetic can cause damage to the cornea and corneal epithelium, if used longer term. One of my friends has epithelium and cornea damage, and can no longer see out of that eye and may need a corneal transplant, so don't want that to happen to you.

https://patient.info/doctor/ocular-local-anaesthetics

Neerav, I'm sorry things are still difficult. I will be keeping a look out for any updates on treatment for corneal neuralgia, along with you, ltree, Fitch, and others in this forum.

Thanks Hokucat. Really appreciate this Can you please tell me about Lotemax eye drop ? I had read somewhere on this forum that Dr. Hamrah has advised patients to use serum in conjunction with Lotemax. He believes Lotemax ensures that nerves are regenerated correctly while patient is on serum. not sure how far is it true