Doxycycline - how long does it take to start working?

[deep_dry_eye]

Thanks deep_dry_eye

how about short-course of (low-dose) steriod
safer than doxy/Azithromycin? What are recommendations from your doctors or experience?

My personal experience is that steriods can be very effective, however, they should be used with caution, especially for anything long term (i.e., > 3months); since they can cause glaucoma (i.e., blindness). Lotemax is typically the goto steriod, as it is both potent and has lower risks of IOP increases. I think steriods are very good at controlling/reducing the inflammation initially, however, you need to switch to some other therapy to maintain and control the inflammation.

IMO, the drugs you should definitely go on is BOTH Xiidra and Restasis. I believe Xiira to be a very very effective drug, and Restasis less so. However, the two drugs have different mechanisms (exact mechanisms unknown), and can work together to reduce your inflammation. I am personally on both Xiidra and Restasis, I have gone from being bedridden to back to using the computer 10+ hrs a day.

You should also definitely look at IPL, I am currently on a (roughly) monthly-IPL regimen. I didn't believe in IPL originally, however after talking to some doctors and experiencing IPL myself, I am definitely a firm believer of IPL. I do not claim to know the mechanism of action for IPL (i.e., I believe the theories of IPL heat, or killing bacteria/virus/fungus to be BS), but I do believe the efficacy of IPL somehow reduces inflammation. My current theory is that it somehow changes your blood vessels and reduces inflammation (i.e., similar to dermatology IPL). For reference, IPL is quite effective in dermatology across various skin conditions including rosacea and acne; I am a very believer than acne and MGD are somehow releated. Various drugs/treatments that help/affect acne also affects MGD. For example, we use similar drugs (i.e., azithromycin/doxy) etc...

I am also currently on both Omega 3 (PRN or Nordic Naturals) and also on GLA (HydroEye). I am not totally convinced these supplements are effective, but I don't think they can hurt either.

[MGD1701]

Hi deep_dry_eye
Since you have tried and doing so many effective ways - all one can possibily have,
how do you know exactly which ones are really working??

maybe some alone would also help?? Just curious!!

[deep_dry_eye]

Hi deep_dry_eye
Since you have tried and doing so many effective ways - all one can possibily have,
how do you know exactly which ones are really working??

maybe some alone would also help?? Just curious!!

The honest answer is that , you don't. Even looking at 1 patient (myself) is neither statistically significant and just anecdotal evidence. My opinions/hypothesis is based on looking at my own treatments and how I responded to them.

i.e., I started with a Xiidra trial, then i stopped, then i tried Restasis, then I tried adding Xiidra back in, then I tried adding IPL on top etc...

What I can concrete say is, due to my treatments, I've gone from being bedridden to back using computer 10+ hrs a day. I can't concrete say which treatment work, or which combination of treatment work, but I can only do my best and share my knowledge and hope this knowledge helps others in this forum : )

I am definitely not fully recovered either, so I am keeping myself on all the treatments. I suspect I will never be fully recover, there are definitely some miserable days still. It's about managing the disease, and IMO Xiidra, Restasis and IPL can all help control the inflammation.

[Guest]

My personal experience is that steriods can be very effective, however, they should be used with caution, especially for anything long term (i.e., > 3months); since they can cause glaucoma (i.e., blindness). Lotemax is typically the goto steriod, as it is both potent and has lower risks of IOP increases. I think steriods are very good at controlling/reducing the inflammation initially, however, you need to switch to some other therapy to maintain and control the inflammation.

IMO, the drugs you should definitely go on is BOTH Xiidra and Restasis. I believe Xiira to be a very very effective drug, and Restasis less so. However, the two drugs have different mechanisms (exact mechanisms unknown), and can work together to reduce your inflammation. I am personally on both Xiidra and Restasis, I have gone from being bedridden to back to using the computer 10+ hrs a day.

You should also definitely look at IPL, I am currently on a (roughly) monthly-IPL regimen. I didn't believe in IPL originally, however after talking to some doctors and experiencing IPL myself, I am definitely a firm believer of IPL. I do not claim to know the mechanism of action for IPL (i.e., I believe the theories of IPL heat, or killing bacteria/virus/fungus to be BS), but I do believe the efficacy of IPL somehow reduces inflammation. My current theory is that it somehow changes your blood vessels and reduces inflammation (i.e., similar to dermatology IPL). For reference, IPL is quite effective in dermatology across various skin conditions including rosacea and acne; I am a very believer than acne and MGD are somehow releated. Various drugs/treatments that help/affect acne also affects MGD. For example, we use similar drugs (i.e., azithromycin/doxy) etc...

I am also currently on both Omega 3 (PRN or Nordic Naturals) and also on GLA (HydroEye). I am not totally convinced these supplements are effective, but I don't think they can hurt either.

IPL closes all those tiny blood vessels that feed the eyelid. Thereby reducing the amount of inflammatory markers that are brought to the lid. That’s why it helps with rosacea. It shrinks those dilated blood vessels in the face.

I know you suspect xiidra and restasis do more than what is claimed. That’s why you say the mechanism of action is unknown I assume but based on what both companies state, the block T cells either by preventing formation (restasis) or T cell death (xiidra). Based on that information alone, taking both is redundant. If you’re right and they do something else, that’s a different story. But there’s no proof of that.

If your IOP is good, then you are better off controlling inflammation with steroids than letting the inflammation run wild. Some people pressures shoot up to like 40. If you aren’t having that response, you can assume the steroids will be safe for you. At that point, the BAK is a bigger concern...that’s why PF steroids should be standards of care for all dry eye patients needing the treatment. Inflammation destroys glands, muscle, collagen, etc. to undertreat the inflammation out of fear of steroids makes no sense. I’ve been on metylprednisolone for 3 months, I’ll be on at least another 3...my pressure today was 14. Lower than when I was on restasis and my inflammation was off the charts, then it was 18. Methylpred is 100 times stronger than cyclosporine and works on multiple pathways.

[deep_dry_eye]

IPL closes all those tiny blood vessels that feed the eyelid. Thereby reducing the amount of inflammatory markers that are brought to the lid. That’s why it helps with rosacea. It shrinks those dilated blood vessels in the face.

I agree this can be a valid theory, much more likely than IPL killing viruses/bacteria. However, the mechanism of action remains unknown.

I know you suspect xiidra and restasis do more than what is claimed. That’s why you say the mechanism of action is unknown I assume but based on what both companies state, the block T cells either by preventing formation (restasis) or T cell death (xiidra). Based on that information alone, taking both is redundant. If you’re right and they do something else, that’s a different story. But there’s no proof of that.

In medicine, the mechanism of action is not as important as the statistical potency. The correct question to ask is, what is the efficacy of placeblo, Restasis alone, Xiidra alone, and Restsas+Xiidra combined; and you want to look at theses statistical distribution. However, unfortunately, neither drug company would fund such a study, and it would be left to academic funding. We probably won't see such a study for many years.

The two drugs do have different theorized mechanism of actions. Cyclosporine is theorized to: "Ciclosporin is believed to work by decreasing the function of lymphocytes.^[4] It does this by forming a complex with cyclophilin to block the phosphatase activity of calcineurin, which in turn decreases the production of inflammatory cytokines by T‐lymphocytes.^[7]"; while Lifitegrast is theorized to "inhibits an integrin, lymphocyte function-associated antigen 1 (LFA-1), from binding to intercellular adhesion molecule 1 (ICAM-1). This mechanism down-regulates inflammation mediated by T lymphocytes.^[1][3]". The binding sites of the two drugs are different. Loosely speaking, Cyclosporine down-regulates t-cell production of inflammatory proteins. While, Lifitegrast binds and disables the entire t-cell directly. In fact, giving more evidence the two drugs are very different, Restasis typically has response schedules ranging into the 6 month period, and Lifitegrast can be effective after just 2 weeks. This is strong empirical evidence that the two drugs are doing something quite different. Even if the two drugs have the same mechanism of action, it doesn't mean they won't be (more) effective together. For example, various infections require dual-therapy antibiotics.

Based on my own personal observations, and chatting with various doctors, dual therapy of restasis+xiidra is becoming quite common and effective.

Restasis and Xiidra are by far the much safer drugs over steriods.

At the end of the day, this is a decision you need to make between you and your doctor.

If your IOP is good, then you are better off controlling inflammation with steroids than letting the inflammation run wild. Some people pressures shoot up to like 40. If you aren’t having that response, you can assume the steroids will be safe for you. At that point, the BAK is a bigger concern...that’s why PF steroids should be standards of care for all dry eye patients needing the treatment. Inflammation destroys glands, muscle, collagen, etc. to undertreat the inflammation out of fear of steroids makes no sense. I’ve been on metylprednisolone for 3 months, I’ll be on at least another 3...my pressure today was 14. Lower than when I was on restasis and my inflammation was off the charts, then it was 18. Methylpred is 100 times stronger than cyclosporine and works on multiple pathways.

IMO, you are understating the potency and risks of steriods. Just because you might be fine with steriods, and you won't develop IOP problems, doesn't mean others will not. It is a fact in the medical community that steriods can cause many nasty side effects (i.e., IOP/glacouma). Does it effect every1? No. Does that mean you should stay away from steriods? No. But it should also mean you should use steriods with caution and care. Methylprednisolone is an extremely strong steriod, I would highly caution usage of this steriod until other options are exhausted. I definitely would not recommend this to be used long-term without strong reasons. Finally, you can still develope glacouma even if your IOP is low.

The choice of medication (including steriods) should be made as a decision with you and your medical provider.

[MGD1701]

Inflammation
What diagnostic testings your doctors perform and confirm that you have inflammation?
MMP-9, osmolarity, 2 stainings, if staining - wait for 2 min.?
or just based on debris on lashes, red eyes etc.? curious to know.

[Guest]

To

Inflammation
What diagnostic testings your doctors perform and confirm that you have inflammation?
MMP-9, osmolarity, 2 stainings, if staining - wait for 2 min.?
or just based on debris on lashes, red eyes etc.? curious to know.

On my first visit mmp9 inflammadry test, light positive left eye, strong positive right eye. After one month, steroids, doxy, eye protection at night. Inflammadry negative both eyes. I had no staining, osmolarity was just over 300. Schirmer on first visit was 2mm left eye 3mm right eye, after one month treatment, Schirmer left eye 20mm right eye 12mm.

becayse it takes a long time for nerves and the cornea to heal and calm after so much inflammation, this course will last 5 more months to allow the system to get under control. Then we will reassess. This has been the most effective treatment I’ve had so far. If I have to pulse steroids forever, I will do it. If that’s what the doctor suggests, it’s the only way I can have a life man.

Tommyboy on this site has been on lotemax 2x a week for over 5 years. I don’t think anyone wants to be on steroids forever. There are infection risks as well as glaucoma. But if the alternative is suicidal pain. What other choice do we have? What’s the point of being able to see if you are miserable and can’t live your life?

[Guest]

I agree this can be a valid theory, much more likely than IPL killing viruses/bacteria. However, the mechanism of action remains unknown.



In medicine, the mechanism of action is not as important as the statistical potency. The correct question to ask is, what is the efficacy of placeblo, Restasis alone, Xiidra alone, and Restsas+Xiidra combined; and you want to look at theses statistical distribution. However, unfortunately, neither drug company would fund such a study, and it would be left to academic funding. We probably won't see such a study for many years.

The two drugs do have different theorized mechanism of actions. Cyclosporine is theorized to: "Ciclosporin is believed to work by decreasing the function of lymphocytes.^[4] It does this by forming a complex with cyclophilin to block the phosphatase activity of calcineurin, which in turn decreases the production of inflammatory cytokines by T‐lymphocytes.^[7]"; while Lifitegrast is theorized to "inhibits an integrin, lymphocyte function-associated antigen 1 (LFA-1), from binding to intercellular adhesion molecule 1 (ICAM-1). This mechanism down-regulates inflammation mediated by T lymphocytes.^[1][3]". The binding sites of the two drugs are different. Loosely speaking, Cyclosporine down-regulates t-cell production of inflammatory proteins. While, Lifitegrast binds and disables the entire t-cell directly. In fact, giving more evidence the two drugs are very different, Restasis typically has response schedules ranging into the 6 month period, and Lifitegrast can be effective after just 2 weeks. This is strong empirical evidence that the two drugs are doing something quite different. Even if the two drugs have the same mechanism of action, it doesn't mean they won't be (more) effective together. For example, various infections require dual-therapy antibiotics.

Based on my own personal observations, and chatting with various doctors, dual therapy of restasis+xiidra is becoming quite common and effective.

Restasis and Xiidra are by far the much safer drugs over steriods.

At the end of the day, this is a decision you need to make between you and your doctor.



IMO, you are understating the potency and risks of steriods. Just because you might be fine with steriods, and you won't develop IOP problems, doesn't mean others will not. It is a fact in the medical community that steriods can cause many nasty side effects (i.e., IOP/glacouma). Does it effect every1? No. Does that mean you should stay away from steriods? No. But it should also mean you should use steriods with caution and care. Methylprednisolone is an extremely strong steriod, I would highly caution usage of this steriod until other options are exhausted. I definitely would not recommend this to be used long-term without strong reasons. Finally, you can still develope glacouma even if your IOP is low.

The choice of medication (including steriods) should be made as a decision with you and your medical provider.

As far as restasis and xiidra, the length of time correlated to the mechanics of action. Xiidra works faster because it destroys the active T cells. Restasis has to stop T cell production, so the T cells already in the system have to die off. That takes roughly 110 days. And since it stops production of new T cells, at the 100+ day mark, you feel better. One is stopping, one is deactivating, but they’re working on the sane pathway. That’s why I say it’s redundant. Id say the best way to use it knowing that would be to use xiidra at the start, to deactivate the circulating T cells. Then after you hit the 4 month mark, taper the xiidra off because the restasis will have stoped production and therefore nothing should be circulating anyway.

Actually, I can see them both working together now long term in another situation. If the restasis isn’t fully shutting down the T cells, then the xiidra can come in and clean up the actives. That actually makes sense. I can see that. I guess my first statement is only accurate under the assumption restasis is 100% effective. Which I doubt.

Im not saying you should just throw steroids in your eye Willy Nilly! I get my pressure checked monthly. I don’t have pressure spikes. I’m lucky. Not everyone can use them safely. Not everyone responds to them. Everyone has to find the treatment best for them. It takes time and trial and error. I’d like to actually try restasis again but compounded in saline. I was allergic to the carrier. I know I need a safer long term solution. But I’m just trying to get myself to a good place, I’m assuming the dr is too...so that when I come off the steroids, I’m not causing further inflammation sleeping with my eyes open for example. If restasis would work I would use it. It’s cheaper for me, cost me 40 a month with my insurance. The methylpred is 85 bucks for 35 days worth.

By the way, all other options were exhausted. Well safe options anyway. I am disabled by erosions if I walk in wind. I tried xiidra and restasis, failed both, tried everything but probing, which I believe is more dangerous than steroids. IPL, but again, my issues are related to the cornea mostly. My oils are great now. But I would still try IPL, just don’t think it’s a good fit for me. I’m close to the end, I’m looking at surgeries and scleraks next, not in that order.

[MGD1701]

Thanks a lot Dowork.

''I had no staining'': You mean dr did staining but you had 0? Did dr do 2 stainings or just one?

I have read recently in an American professional journal, staining should be done BOTH coneral and conjuncatival to detect the inflammation (in the absence of MMP-9?). 85% of my doctors did not do staining at all.

I hope your eyes are better and that got more decent sleep.

[deep_dry_eye]

Inflammation
What diagnostic testings your doctors perform and confirm that you have inflammation?
MMP-9, osmolarity, 2 stainings, if staining - wait for 2 min.?
or just based on debris on lashes, red eyes etc.? curious to know.

MM9 and osmolarity, while these tests have high true-positives % , I could not find any published literature on false negatives. These should be used as a tool to assist diagnostic, but never alone.

Staining, you don't need to wait for 2 mins, you should be able to see any dmg immediately.

[MGD1701]

(fluorescein) staining - 2 min is something 'new'.
If dont wait, doctors see no staining - but if wait, can see (lots of) stainings, according to
Dr Scott Schachter - video https://dryeyecoach.com/?s=Scott+Schachter+

Unfortunately, most doctors still do NOT know it. Just one of my doctors waited.

[deep_dry_eye]

staining - 2 min is something 'new'.
If dont wait, doctors see no staining - but if wait, can see (lots of) stainings - makes a big difference, according to
Dr Scott Schachter - video https://dryeyecoach.com/?s=Scott+Schachter+

Unfortunately, most doctors still do NOT know it. Just one of my doctor waited. 85% of my doctors did not do staining at all.

I did not know this ... but thinking back, I think my dr already waits a few mins before looking at my staining. At my doctor, an intern does the staining and looks at my eye first. Then afterwards, he looks at my eyes, so there's def a few mins inbetween.

[Guest]

Thanks a lot Dowork.

''I had no staining'': You mean dr did staining but you had 0? Did dr do 2 stainings or just one?

I have read recently in an American professional journal, staining should be done BOTH coneral and conjuncatival to detect the inflammation.
85% of my doctors did not do staining at all.

I hope your eyes are better and that got more decent sleep.

He put flourescin dye and lissimine green, but I had no corneal staining. He looked at my eye first with no staining. He put flourescinin dye first, then waited and looked at the cornea, then he put in the lissimine green and waited and then did the full exam. Took pictures and showed me everything he was seeing on his slit lamp. He was very thorough.

yes, I’m sleeping longer and better. So I feel better, I think once I address the sleep apnea, I will feel even better. I also need to find a better gel, I ordered one from the UK moorfields brand lubristil and thealoz duo gel...there’s no good PF gel in the US.

[Alix]

Interesting posts! So it seems some of you are on doxy and cyclosporine at the same time.
If you didn't have to use both and could control your condition using just one, which would you choose?

I do not have a medical background but I would have thought its better to use topical eye drops (Xiidra/Restasis/Ikervis) rather than be on antibiotics long term.
That is why I am trying to find alternatives to the doxy I am taking.

[deep_dry_eye]

Interesting posts! So it seems some of you are on doxy and cyclosporine at the same time.
If you didn't have to use both and could control your condition using just one, which would you choose?

I do not have a medical background but I would have thought its better to use topical eye drops (Xiidra/Restasis/Ikervis) rather than be on antibiotics long term.
That is why I am trying to find alternatives to the doxy I am taking.

Doxy at 40mg for several months is quite safe. Xiidra/Restasis/Ikervis is also quite safe long term.

The honest answer is that we don't have a standardized protocol. Each doctor will have different opinions.

My suggestion to you is, get on doxy for awhile, or Azithromycin. Concurrently, get on Xiidra/Restasis/Ikervis as well. See if you get substantial improvements after 1-3 months. After which, remove the doxy and see what happens. It's really trial and error, as each patient can be quite different.

The good news is, these medications are relatively low risk.