Discontinuation rates of Restasis (Cyclosporine) and Xiidra (Lifitegrast)

[youzee]

An interesting article on Restasis and Xiidra discontinuations. 60-70% Dry Eye patients discontinue these drugs. Please research and ask your doctor questions before getting any of these treatments.

[deep_dry_eye]

The flip side, it's also encouraging to see the drugs improve 30-40% for most patients (making the assumption that if you continue to use the drug for 12+ months, you probably saw /some/ improvement).

[Drynyc]

They don’t tell you in the article is that it takes a long time for the drug to kick in like 6 months.

so patients aren’t really seeing a therapeutic dose before they quit.

they are also extremely expensive without insurance.

however I believe they only account help for 20 pct of the cause.

[Chemia]

"The flip side, it's also encouraging to see the drugs improve 30-40% for most patients (making the assumption that if you continue to use the drug for 12+ months, you probably saw /some/ improvement)".

I don't agree. Most patients that continue treatment do so probably because they fear they could get worse if they discontinue treatment. If you look at the data comparing the vehicle to cyclosporine (restasis and cequa), the drug is only slightly better but definitely nothing impressive. Also, here is something interesting I came across:

A review of topical cyclosporine A for dry eye syndrome, Cintia de Paiva, MD, PhD, and coresearchers found that evidence on the effect of cyclosporine on ocular discomfort and ocular surface and tear film parameters, such as corneal fluorescein staining, Schirmer’s test, and tear film break-up time, is inconsistent and may not be different from vehicle or artificial tears reported in various trials. There also may be an increase in nonserious treatment-related side effects, such as burning in cyclosporine groups. The evidence they reviewed from 30 randomized clinical trials and 4,009 participants did not support that improvements in conjunctival mucus production through increased conjunctival goblet cells leads to improved symptoms or ocular surface and tear film parameters. Large clinical trials that are well planned and look at long-term data are needed to assess cyclosporine A further, the researchers concluded. The research appears in Cochrane Database of Systematic Reviews.

Source: https://www.eyeworld.org/

[LindaDawn]

Chemia. Thank you for all your hard work in finding these info, it’s just what i kinda expected.

[Alix]

I think most people who are ill/in pain, if they are desperate, are going to try a medication even if only has a 1% chance of working because they might the ones in the 1% that it works for.

As the range of medication on the market for dry eye is currently limited, why are you discouraging people from trying Restasis and Xiidra? What is the alternative? There is no harm in giving them both a go.

I have used Ikervis which is a cyclosporine similar to Restasis. Unfortunately it didn’t work for me, but I do not regret trying it so at least I could tick it off my list and move on.

[gilles]

If you want to know if there is a bear in a cave, you check all entrances for a long enough time - long enough to be sure that a bear would not be alive, e.g. of starvation - to be sure none has come out. If none has, you can be sure enough that no bear is inside the cave, and you move on. Speculation as: the bear might be magical, might have a secret escape, might ..., is interesting but you'd rather believe in the more probable answer, and only more prove as to the alternative answers will change the probable answer. I don't know what the rate is, but imagine if for 10% of negative papers on cyclosporine eyedrops you have 90% positive science papers, then doctors and scientists will base themself on the latter to make conclusions. The statistically significance and the quantity of these statistics matter.

Anyway, if some people are in need of a positive one for cyclosporine eyedrops, here you go:

In dry eyes with MGD, 0.05% CsA improves the tear film stability as well as subjective ocular discomfort, and is effective in controlling lid margin inflammation.

The experimental group showed a statistically significant improvement in the ocular surface disease index (OSDI; P<0.001), tBUT (P=0.004), Schirmer test score (P=0.008) and LMT (P=0.021) by repeated measure ANOVA

source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5902362/

Posting results of different papers should never convince people, only statistical significance and the quantity of these statistics (in papers for example) matter.

And as Alix already pointed out: what works for one person might not work for someone else. Try different things out (in consultation with, for example, a doctor and some research of yourself).

[LindaDawn]

Giles. I am trying to interpret research papers. Struggling to understand the ‘P’ significance! Can you help at all?

[gilles]

Giles. I am trying to interpret research papers. Struggling to understand the ‘P’ significance! Can you help at all?

This video will explain it: https://www.youtube.com/watch?v=eyknGvncKLw

You get the p-value by making a calculation with the results (in cyclosporine example it is with the results of patients before and after a test - before and after using cyclosporine eyedrops). Then you will determine if the results are significant (if there is a change, if there is e.g. improvement) by calculating this p-value.

Most authors refer to statistically significant as P < 0.05 and statistically highly significant as P < 0.001.

source:https://www.statsdirect.com/help/basics/p_values.htm

Taking the cyclosporine example: if the p-value is statistically significant, that does not always mean that there is an improvement for the patients, it represents the probability of the occurrence of a given event.
So for the paper I posted earlier, Schirmer test score (P=0.008) you could say that the p-value is statistically significant, the occurences of patients having a variation in the Schirmer test score before and after the test was very high (very probable).

Other people who have more knowlegde about the p-value or statistics and want to add more info or correct me, feel free!

[LindaDawn]

Giles. Thank you. Will go and listen.

[LindaDawn]

Gilles. Not that easy to understand! Does it mean that when there is a result and the p value is 0.001, then the results can be taken as being reliable?

[gilles]

Gilles. Not that easy to understand! Does it mean that when there is a result and the p value is 0.001, then the results can be taken as being reliable?

I edited my previous answer with an example.

It has nothing to do with being reliable, the p-value is calculated to give more information about the results of an experiment.
If with a group of 10 people, making them run 1 mile and nobody falls, but with them taking a drug and making them run 1 mile again and 9 out of 10 people fall, the calculation of the p-value with the results will make your p-value very low, which means it is statistically highly significant as P < 0.001. But that value does not say anything about the drug being effective, it speaks about the occorences - people falling after taking the drug compared to not taking the drug - being very probably. And if it is very probable, then it is up to you to interprete or conclude that the drug is the cause or has some correlation (but with scientific papers the results, conclusion and discussion parts go deeper into interpreting these results for you).

You don't need to know that much about p-value or statistics to understand - most of - the scientific papers (though it is a plus), as mentioned already: almost all papers have a results, conclusion and discussion chapter, explaining the experiment and going deeper into explaining and trying to interpret the results.

[LindaDawn]

Gilles. Thank you so much for all your time in the above. Want to still try and understand research more. Will talk to our research nurses at work, x