New Treatments including IPL and Xiidra

[farmgirl]

I often notice questions about IPL.

I had 4 IPl and really didn't notice much difference until after #3. I then had the 4th and seemed to backslide a bit. I am booked for 2 more as my test results were dramatic (as I posted before) and I don't want to lose the gains I have made. Then after #4 my Dr started me on Xiidra (I am aqueous deficient). I had a sample and thought it was only once a day so after about 6 week felt no difference. Then I got the prescription filled and discovered I was to be using it twice a day. Almost within the first week I noticed a difference. About 3 weeks later the results are quite dramatic. I often go all day without needing much for drops except maybe a few in the evenings. Today for example I was at a funeral of a very dear friend. My eyes kept dropping tears which I had to daub but it was not because I was crying, it was just that the eye was overtearing and had started in the car on the way to the funeral.

I am not sure if this is going to be an ongoing problem but in my dreams I will need those lower plugs removed. OK I said 'in my dreams' but I am thrilled at the difference these new treatments have made. I feel the best I have felt in 8 years and the last few weeks I would say it has been about 80% consistent.

I guess my real point is, never give up looking and trying new things and never say I will never improve.....be patient, there are always new treatments and diagnostic tools on the horizon. This has been an 8 year journey for me and although I am not yet perfect I am what I would describe as 'very controlled' at this point. Will I ever be perfect, I surely hope so but if nothing changes I can cease complaining. Color me smiling...F/G.

[epicjinx]

Im glad these treatments have made a difference for you! It's nice to read some encouragement at the bottom too. How is ipl when getting it done? I'm thinking this will be another thing for me to try when it's possible.

[farmgirl]

It is not fun but tolerable. The worst it the expression of the old oils but I figure, no pain, no gain. If the treatment is deemed appropriate for you I highly recommend you give it a try. At the very least I recommend getting a lipiview test to see exactly what your glands look like and how much oil you are producing, those photos are very revealing. Had this treatment been available years ago my glands would not have been so badly atrophied.

[Guest]

farmgirl do you know what your oil level numbers are after ipl?

[epicjinx]

It is not fun but tolerable. The worst it the expression of the old oils but I figure, no pain, no gain. If the treatment is deemed appropriate for you I highly recommend you give it a try. At the very least I recommend getting a lipiview test to see exactly what your glands look like and how much oil you are producing, those photos are very revealing. Had this treatment been available years ago my glands would not have been so badly atrophied.

ive had meibography for me my my quality is better thanks to fish oil but quantity is lacking so just trying to figure out if it's what I should be going for next as most of my glands are open.

[hopeful_hiker]

farmgirl your story is inspiring. Last year a doc at the ER told me that I had Sjogren’s without any tests. I read horror stories online about no cure and destruction of the glands and was devastated. Ophthalmologist at the local hospital shrugged shoulders and said Restasis and plugs are all I can do. Turned out I don’t have Sjogren’s (I have rosacea).

Xiidra did nothing for me but IPL has improved my TBUT from 3-4s to 9-11s. I still have problems but I don’t think it’s all about dryness at this point.

In any case, I hope people newly diagnosed with Sjogren’s can read your story and start their healing journey.

[Rebecca Petris]

I am thrilled at the difference these new treatments have made. I feel the best I have felt in 8 years and the last few weeks I would say it has been about 80% consistent.

farmgirl SERIOUSLY??? (Cartwheels) So happy to hear this!!!

I hope you'll consider writing something for dryeyestories.com at some point... people need to know there's hope and that there's reason to persevere.

[farmgirl]

For sure I will some day Rebecca, I just have to be sure I don't suddenly regress, we all know how that can go....sigh

You know it's interesting, we are almost afraid to post the positive stuff because we have a good week or two and then then next week something else unexplainable changes and it's another step back. This time it has been so consistent that I am really optimistic that I have finally turned that last corner where I can almost forget that I have a problem. I still need drops in the night but gosh I am just sailing through the days without anything much at all, I mean day after day for the last couple of weeks at least. It seems that if I forget and only use the Xiidra once then I am not quite as good but If I use it twice...yowsers. This makes me wonder if the Xiidra is something I will need to use till I die or if it will reduct the inflammation and stimulate the glands and in time get them producing with no prodding...hmmm?

I am quite convinced that the Xiidra alone would not have been sufficient to do the job. I think it was really, really important to get those glands functioning better and for me I seemed to have struck pay dirt. with both having come online for me at the same time.

[farmgirl]

My average LLT numbers Lena before IPL were 71 and 87 and after were 100+ both eyes.

Sadly hopeful_hiker I don't believe that most Drs are aware that dry eye is so multifaceted and that Sjogren sufferers more often than not also suffer concurrent MGD. To treat just the aqueous deficiency is a huge mistake that, for me at least, left me with more damage to my glands than was necessary had I been treated earlier. Having said that I can't really blame any doctors because these treatments and diagnostic tools were not even available until recently. What would be a real travesty is if Sjogrens patients these days are not being referred for these treatments and are just being told 'Restasis and plugs are all I can do'....that to me would be criminal.

[hopeful_hiker]

farmgirl unfortunately, that's what I've heard this January. First from a rheumatologist, then an opthtalmologist. I read all I could here and in TFOW DEWS II so I pressed on to find other options.

I am curious. Do you still use serum at all? Or just Xiidra and night-time drops?

[farmgirl]

So did you attempt to educate them and set them straight...gosh I hope so.

I try to use the serum but it seems that I need to remind myself as I don't typically feel the need for any drop during the day anymore. Evening is the best for remembering because if I do feel I need drops it will be in the evening. It is morning now and I have put the Xiidra in already. I will follow with serum but not because my eyes feel dry.

Interestingly enough I was just mentally debating yesterday whether or not I will refill this prescription when my current batch is used up. I am thinking I will try going without. Of course we hate to give up anything that has helped in the past in case it is part of the 'package' that we have developed for ourselves that has made us feel better.

[mbperso]

My average LLT numbers Lena before IPL were 71 and 87 and after were 100+ both eyes.

Please, do you know your TBUT before and after ?

[deep_dry_eye]

I often notice questions about IPL.

I had 4 IPl and really didn't notice much difference until after #3. I then had the 4th and seemed to backslide a bit. I am booked for 2 more as my test results were dramatic (as I posted before) and I don't want to lose the gains I have made. Then after #4 my Dr started me on Xiidra (I am aqueous deficient). I had a sample and thought it was only once a day so after about 6 week felt no difference. Then I got the prescription filled and discovered I was to be using it twice a day. Almost within the first week I noticed a difference. About 3 weeks later the results are quite dramatic. I often go all day without needing much for drops except maybe a few in the evenings. Today for example I was at a funeral of a very dear friend. My eyes kept dropping tears which I had to daub but it was not because I was crying, it was just that the eye was overtearing and had started in the car on the way to the funeral.

I am not sure if this is going to be an ongoing problem but in my dreams I will need those lower plugs removed. OK I said 'in my dreams' but I am thrilled at the difference these new treatments have made. I feel the best I have felt in 8 years and the last few weeks I would say it has been about 80% consistent.

I guess my real point is, never give up looking and trying new things and never say I will never improve.....be patient, there are always new treatments and diagnostic tools on the horizon. This has been an 8 year journey for me and although I am not yet perfect I am what I would describe as 'very controlled' at this point. Will I ever be perfect, I surely hope so but if nothing changes I can cease complaining. Color me smiling...F/G.

Hi Farmgirl. We traded a lot of messages before. I am really happy for you!

I am a huge personal believer of both IPL and Xiidra. I am currently on monthly IPL and BID Xiidra and Restasis. I firmly believe that Restasis and Xiidra have different mechanism of action, and they can compliment each other.

In consultation with your doctor, you might want to consider monthly IPL, and add Restasis to your treatment plan as well.

[farmgirl]

I have used Restasis before and didn't notice any appreciable difference. I tried it again recently and found I can no longer tolerate it. I had another IPL on Tuesday and am scheduled again in two weeks. Then I will have to take a break until May when I return from Panama where I will be soaking up the humidity. I do struggle here somewhat when it turns cold and the furnace runs and makes the air so dry. Last week I was not so great as I had been the weeks before but that should change when I get out of Canada....brrrr.

mbperso my TBUT the only time I had it tested was 2-3 sec. That was years ago when I was much worse so don't know what it would be now...somewhat better I am sure.

[MGD1701]

Hi farmgirl
I have read an article recently by some experts (professors Bennie Jeng, Edward Holland etc) in USA that
xiidra works better for people with Sjo s, for your info.