Success with increased cyclosporin concentration but not frequency

[willwork4tears]

I have been using Restasis 1 drop, twice a day for 5 years. Despite the fact that I was convinced it "wasn't working" my dry eyes actually worsened when I had to stop using it for a wash-out period prior to participating in a clinical trial. After the trial, I started the Restasis again and barely noticed an improvement.

Then I read the paper that Rebecca mentioned in the Newsletter on a study that showed that increasing Restasis use to 3 or 4 times a day for a minimum of two months resulted in significantly improved signs and symptoms of dry eye in graft-v-host disease and Sjogren's patients. I was intrigued.

I tried it 4 times a day and didn't see any improvement. I reported this to my doctor and asked to have an eye drop custom compounded with a higher dose of cyclosporine. He quickly agreed that this was a good idea and said he had participated in running a study of dry eye in graft-v-host disease patients who used 1% cyclosporine in peanut oil and that the patients had great improvement. He wrote me the prescription and sent me on my way. I thought maybe 1% (20 times higher dose) would be overkill but was so desperate, I tried it.

The compounding pharmacy that made the drop used preservative free cyclosporine (Sandimmun) in corn oil. I tried the drop twice a day for a few days and noticed moderate stinging and burning. The pharmacist suggested that 1% was too high and that my eyes might be sensitive to the drug. He recommended titrating the dose up slowly and replaced the drop with 0.2% drops (4x stronger than Restasis). The difference is night and day! No more stinging and burning. Increased tears. Decreased dryness. And the corn oil feels sooooooo good.

If you're interested in increasing dose or frequency, there are options out there, but TALK TO YOUR DOCTOR AND PHARMACIST FIRST.

The drops were $28 and should last for 50 days (1 drop, each eye, 2x daily).

The pharmacy I use has a lot of experience working with dry eye patients. If you're interested in the pharmacy name/number send me a personal message. [Disclaimer] This pharmacy is in my home town and my brother is one of the compounding technicians there, which is why I trust them to make a product for my precious eyes. However, any compounding pharmacy should be able to make a custom product...just make sure they use Sandimmun and not generic cyclosporine! The generic cyclosporine is cheaper (more profit margin for the pharmacy) but full of preservatives and tends to cause more stinging and burning. Plus we dry eye sufferers know that preservatives are bad bad bad for dry eyes!

To find a compounding pharmacy in your area:
http://www.iacprx.org/site/PageServe...=lookup_survey
Information on Sandimmun:
http://www.betterhealth.vic.gov.au/b...e/nvcsimal.pdf

[Lucy]

Willwork, this makes perfect sense if one takes a few minutes to think about it.. You are absolutely right about folks talking to their doctor and pharmacist about this before trying it.

There may be people wanting to try something different and this certainly is not on the far end of the spectrum. Not when some are having "probing" done. Lucy

[ringo]

I have been prescribed 1.0% cyclosporine drops and they do sting upon instillation, but this pain is worth the incredible relief and improvement the drops provide, especially over time. I am also using a mild steroid drop to prevent sensitivity.

[willwork4tears]

I could tolerate the burning and stinging upon installation. I guess the real problem was my eyes were burning and stinging throughout the day for no reason. I'm seeing improvement with the 0.2% but want more! My plan is to titrate the dose up more slowly. Then I'll know exactly what dose maximizes the improvement while minimizing exposure to drug. It'll take months....but we'll see what happens!

[Guest]

Good luck! Please keep us posted!

[Aaron77]

Restasis can only be given out in Canada by an opthamologist and it has to go through a special ordering system as its not fully aproved for general use here in Canada (I don't know the specifics). I don't think we have the option of compounding cyclosporin here in Canada, at least my opthamologist says its not possible... wish I had this option.

[Guest]

I am certain that it can be compounded here in Canada... I spoke to a local compounding pharmacy about it back in December...

Call some pharmacies in your area until you get a recommendation for a good compounding pharmacy where you live... Where I live, most pharmacists know that this one particular pharmacy is THE go-to place for any unusual compounded products... hopefully the same would be true in your area as well.???

Doctors are not always aware of the wide variety of products that can be compounded by a good compounding pharmacy.

[willwork4tears]

Definitely loving the stronger cyclosporine!

Good luck! Please keep us posted!

I used the 0.2% for 8 weeks and definitely saw improvement. I'm sleeping through the night better (waking up 0-1 times/night to put in drops instead of 3-4 times/night). Also, the gritty, scratchy, sandpaper feeling I usually get in the evenings that makes me want to claw my eyeballs out is significantly improved.

I started 0.4% last night. So far I've used it 2 times and no stinging/burning with this dose either. Hopefully I see even more improvement! I'll have to give it a couple weeks. I didn't see maximal improvement when I moved from Restasis to 0.2% for 4-5 weeks.

I'm optimistic a higher functioning version of me is right around the corner!

[Guest]

That's great news!! Hopefully you will get even better results with the 0.4%!

[ringo]

cyclosporine is the only thing that actually treats dry eye

I also incresed the cyclosporine concentration gradually-- the best vehicle that stings least is corn oil.

Doctor started me on 0.05, then 0.2, then 0.5, then 1.0, and now 2% in corn oil. I have been sitting at this pc for the last 2 hours without putting a single tear drop in my eyes. There is strong AC as well. And my eyes look their best in 4 and a half years. I am back to myself.

In addition I take only 1 tablet pilocarpine a day plus 1 drop of FML.

Thank God for cyclosporine. I was living in hell and debilitating pain every single waking and even sleeping moment of my life.

[willwork4tears]

My drops are in corn oil as well. I think the corn oil feels soooooo good. I wish I had a bottle of just plain corn oil to use as rewetting drops!

[willwork4tears]

Ringo,

I had no idea how you managed to use 1% and then later the 2%. When I tried the 1% is stung/burned like crazy. NOW I know how you managed. Titrating the dose up slowly really works! I used the 0.2% for 8 weeks and then the 0.4% for almost two weeks. On Wed I accidentally grabbed my 1% bottle instead of my 0.4% and realized my mistake a few minutes after I put in the drop. But not b/c I had SE, I simply noticed the 1% on the label. I was surprised that my eyes weren't stinging/burning. And I had a great dry eye day. I had actual tears in my eyes!!!! So I've kept on with the 1% since then. I'm on day 3 in a row of experiencing tears and feeling much better. Being on the lower doses for a few weeks must have desensitized me enough that now I can tolerate the 1% just fine. (It does sting/burn a little, but it is very manageable and much improved over the first time).

I'm sleeping through the night and not even using my Tranquileyes! I no longer wake up to put in drops, gel, etc.

Yeah!!!! Maybe I won't need cautery after all. I'm so super stoked!

[ringo]

I am so happy for you! I have been posting my experience here and I was feeling a bit sad that noone seems to be prescribed the same dosages and medications; I knew that nothing else provided the relief and improvement that increased cyclosporine did; and I was trying to get that message across....I am so happy it works wonders for others as well...

Thank you for sharing.

Ringo,

I had no idea how you managed to use 1% and then later the 2%. When I tried the 1% is stung/burned like crazy. NOW I know how you managed. Titrating the dose up slowly really works! I used the 0.2% for 8 weeks and then the 0.4% for almost two weeks. On Wed I accidentally grabbed my 1% bottle instead of my 0.4% and realized my mistake a few minutes after I put in the drop. But not b/c I had SE, I simply noticed the 1% on the label. I was surprised that my eyes weren't stinging/burning. And I had a great dry eye day. I had actual tears in my eyes!!!! So I've kept on with the 1% since then. I'm on day 3 in a row of experiencing tears and feeling much better. Being on the lower doses for a few weeks must have desensitized me enough that now I can tolerate the 1% just fine. (It does sting/burn a little, but it is very manageable and much improved over the first time).

I'm sleeping through the night and not even using my Tranquileyes! I no longer wake up to put in drops, gel, etc.

Yeah!!!! Maybe I won't need cautery after all. I'm so super stoked!

[willwork4tears]

I don't know why doctors are so hesitant to prescribe higher doses of cyclo. I think it's multifactorial; they don't bother to read the literature, they don't want to spend the time to counsel patients on how to titrate the dose slowly/manage side effects, etc, and a lot of doctors don't trust compounding pharmacies. Which brings up a whole other problem....In the U.S. there's a lot of politics over how compounding pharmacies should be regulated (or if they should be allowed at all). A lot of it has to do with the power of the pharmaceutical companies to lobby the legislators to limit compounding because the pharmaceutical companies don't want to lose patients to compounding who would normally be forced to purchase their patented, brand name, overly priced medications. Just think about Restasis as an example (I can give many others)....it's the only FDA approved drug to treat dry eye and how many times have you heard people complain on DEZ that it's prohibitively expensive?

And while I'm on my rant....if you think your doctors are prescribing you medication b/c they independently believe that it's the right one for you....wrong. Doctors are incentivized by the pharmaceutical companies to write prescriptions for their products. Why do you think pharm sales reps make 6 figures? B/c those nicely dressed, outgoing, persuasive people take your doctors out to fancy dinners, give them lots of free samples and other perks and tell them that their drug is the BEST. It's the same for vets, too. When you go to a vet that sells prescription cat/dog food, did you know that many times the vets carry those brand names of food b/c the pet food companies pay off their vet school loans in exchange for exclusively selling their products? (Trust me I have a diabetic cat and I obsessively researched her condition like I research my own. Oh...and her diabetes is completely in remission, in part due to cat food that my vet had never even heard of).

I was also really surprised that I noticed a difference in tear production after I "accidentally" instilled the higher dose. I mean, I could tell the difference within a few hours. I've kept with the 1% 2xday and I'm still feeling so much better. Evidently, there is some threshold of effective concentration for me between .4 and 1 that I crossed. I was so happy I emailed my eye Dr. on Fri and told him the good news!

I agree with you....I feel like a lot of other people could be helped by this treatment. It's certainly not for everyone. But I think custom compounded medications in general are underutilized as everyone seems to be herded into a category by doctors, slapped with the "treatment" for that category and sent on their way. Everyone is different and tailoring the tx to each individual can be extremely beneficial.

Ok...enough soap box for the day....sorry!

I am so happy for you! I have been posting my experience here and I was feeling a bit sad that noone seems to be prescribed the same dosages and medications; I knew that nothing else provided the relief and improvement that increased cyclosporine did; and I was trying to get that message across....I am so happy it works wonders for others as well...

Thank you for sharing.

[indrep]

I would say that consumer advertising drives more pharma sales today than fancy dinners. In my experience doctors write Rxs now because patients come in asking for them. With consumer advertising and the information available through the internet the patient is more informed or misinformed than ever before.