I've been diagnosed with glaucoma and cataracts, and also Pseudo Exfoliation Syndrome in my right eye which makes glaucoma worse. I've seen somewhere before using steroids (Clobetasol) can impact glaucoma and cataracts. I've just seen something online that it can cause glaucoma and cataracts. Has anyone had this experience? Did the clob usage have to be stopped? I am really worried about this. Is there anything other than Clobatesol that can be used for LS? Anyone?
Hi. I'm interested in your replies to this. I have been using clobetasol for years and have just been told I've got cataracts forming. I'm told not to worry though as it is easy to fix. I just didn't realise about the glaucoma connection. That's not so easy.
same here!
Hello Micheline,
I saw a post on here a couple of weeks ago by a lady, she said by using extra virgin olive oil and reapplying after every visit to the toilet she cured her LS within a few days. I cannot remember her name but it was something to do with horses, if I find it I will let you know.
Hi Chrisy,
Thanks for your reply. I read online that steroids can cause cataracts and glaucoma. Just wondering if anyone has this. Yes, cataracts on their own are sucessfully removed, but it is more complicated when you have glaucoma (pressure build-up). I also have pseudo exfoliation syndrome which is a dandruff like flecks that gather in the iris causing more blockage and pressure build-up. Now the specialists are having a hard time lowering the pressure because of the exfoliation. But now also I'm inquiring about this steroid that I'm taking for LS that impacts pressure as well. So, it is. a frightening thing. Just read a post replying to me that I should ask my eye specialist to talk to my LS doctor. That's going to be harder said than done, but I'll certainly try. But that's only in 6 weeks from now. I've just been given stronger eyedrops to deal with the pressure to use for 6 weeks. I did manage to blurp out this steroid to one of the eye assistants but all she said was either reduce or eliminate the steroid or they increase the drops dosage. Trouble is I've heard that clobetasol is the only treatment for LS that works, although some people have had success going the natural way.
Sorry, I meant easier said than done.
Hi Jen,
Well that's interesting. Would like to hear more on it. Also would like to hear of anyone else having glaucoma and LS and they're using steroids. Thank you for your reply.
Depending on age I think cataracts are very common. According to info online by age 65, over 90 percent of people have a cataract . I have the beginnings of one. Are you too young to have the problem?Otherwise it may have nothing to do with the steroid. As I understand it there is NO cure for LS. Steroids are the most effective at controlling it. According to my doc who specializes in vulval skin problems other treatments will soothe but not stop LS. I think if something like olive oil actually cured it we would all be cured by now.
I think it is thought to be the only treatment guaranteed but sufferers do tend to try everything. Some of us find other treatments that help.
Hi Beverly,
I know what you are saying. I've been on the LS board for quite a few years now. My LS is very much controlled following instructions from the Vulva Clinic here in Ottawa since 2016. No problem there so far. My problem now is the effect that the steroids have on my glaucoma. Glaucoma is all about pressure build up in my eyes. Steroids increase the pressure. Cataracts are very common but affect your vision where you have trouble seeing eventually and they have to be removed. But they can't operate to remove the cataracts until the pressure is removed. See the dilemma? I just wanted to know if someone went through this and what happened. Was it resolved?
Yes that's what I hear and read that steroids (clobetasol) is what to use for LS, but hopefully someone has or had cataracts, LS, and glaucoma and applying steroids and because steroids increase the pressure in the eyes (I read), I would like to know what happened to resolve the issue or dilemma in order to remove the cataracts in their case. If you get a chance to talk to your eye specialists, ask them what they think about the impact the clobetasol (steroids) on your eye pressure and the impact on cataract removal. Do you have glaucoma?
And please let me know what they say. You can message me privately if you wish. The only answer I got when I asked was either to reduce or eliminate the steroids or they increase the drops dosage. Thank you Chrisy.
Beverley,
Don't kid yourself that doctors know best, they will never recommend natural remedies as there is no money in it. Doctors are tied to the drug companies who run the medical profession, just like the food industry is run by the chemical companies also, doctors are paid to prescribe certain drugs. Drug companies are not in the business of curing people as that is a customer lost.
Bottom line is natural remedies can work, most drugs are derived from herbs, then chemicals added.
jen, Actually, my doctor is open minded and very interested in any info re responses to natural remedies. But as there are no studies or proof other than anecdotal that LS is controlled better by natural substances than by steroids it stands to reason that a doctor would tell you what medical information is available. Otherwise they could be sued, I'm sure. Sounds like you haven't ever been helped by a doctor or a medication, but I certainly have been. I have benefited so far by seeing the gyn and the medication she has prescribed. I am not cured of LS, but it is my understanding autoimmune diseases are not curable. I have been helped in the past by herbs and acupuncture for various issues so I am certainly not opposed to them, but I also would never rule out seeing a doctor and don't see them as my enemy or shills for pharmaceutical companies. Western medicine treatment pretty much consists of medicines that are measurable and controlled.
micheline, did you find info saying that using a topical steroid on the vulva has that effect on the eye? I came up with occipital steroids having an effect. Did they confirm at the eye clinic that using the steroid for LS would cause the increase? If so it certainly does sound like an issue. Also as both LS and cataracts are problems specifically of older women. Would using a weaker steroid help? I use Triamcinolone. Wonder if that would change anything. Good luck. Let us know how you resolve this as I'm sure many of us will be dealing with the same issue eventually.
Hi Beverly,
I understand what both of you are saying and I can identify with both you and Jen. But speaking from experience and I'm 77 years old and have been through a lot and have read a lot. I think some of what Jen says is true and some of what you're saying is true. But I think it depends on who the doctors are. There are doctors who push medicines to their patient if it pays them at the expense of their patients. I've just been through that experience from my previous GP who pushed on me a dangerous osteoporosis drug by injection when I found out through my own research that I didn't have it. She was hesitant in giving me the numbers of my bone density tests and after my insisting, she finally relented. After researching these numbers in the Internet, I found out I didn't have it. There is nothing stopping these doctors from accepting payments from companies. The new GP I have now doesn't prescribe anything for bone loss except calcium pills, exercise, and healthy diets. What's the point of prescribing a drug that ends up being worse than the bone loss? She is not a pill pusher either. All I'm saying is that from all the research and reading that I've done and personal experience is that everyone has to check, check, and check because among the good honest people out there in the medical profession, you have these unscrupulous ones who can cause a lot of damage to their patients. Personally, I'm not 100% convinced that Clobetasol is the only remedy for LS. You have to ask yourself why is there not more research going into it to find out if something else would work? Ok, it's not curable. I get that. But just to find out if something else would stop it or control it? Who's benefitting from the sale of Clobetasol? This is not proof, only questions, but I wonder.
Hi Berverly,
Posted a reply just before I just found your post so replying now to it. I did find something in the Internet that talked about an Indian study that was done which included topical Clobetasol treatment in one of 3 groups. But it mentioned Clobetasol 17 whatever that is. Like you, I'm wondering the same thing if it's topical only and far from the eyes if it applies here. I wash my hands twice but is that enough? The only answer I got from the eye specialists at the Eye Institute is that they either have to increase the dosage of drops or I stop using Clobetasol. But I'd like to probe that further. Don't know if that's a valid response. I have to wait 6 weeks unfortunately to ask them. But this time, I'll ask for confirmation of it. I had brought it up at the end when the appointment was finished.
Thank you for including your steroid. I took note of it. I'll certainly bring that up. Yes, probably a weaker steroid would help I'm sure. So that's a help. Thank you for that.
For older women, yes cataracts and also pseudo exfoliation syndrome I thought was rare is more common than I thought. I was furious at the waiting time for cataract removal but I was told that a lot of people have this along with cataracts. Also found out that it's prevalent among people with Mediterranean and Scandinavian ancestry.
micheline, I am the trust but verify type. Anything a doctor prescribes or recommends I research. Was just joking with my sister yesterday that my medical records probably have "non compliant" in bold letters across the top. I took Fosomax for a short time...just long enough to be told I "had the bones of a 30 year old" (I was 50), so I stopped taking it to the doc's consternation. (She has since retired). But I had read about possible problems and saw no reason to push my luck. Have since slipped into osteopenia, but still safe ranges. I do take calcium and walk at the moment rather than lift weights (shoulder issue). Have also refused statins. Doctors don't even bother to bring the subject up now. My mother's cholesterol numbers were astronomical yet she lived to be 95 without taking statins. But when it comes to LS I have read and read and can find nothing but steroids as the most effective treatment. I already messed myself up by not agreeing to use hormone cream when diagnosed with atrophy a few years back. It is highly likely the lack of estrogen brought on the LS, (though no proof). So now I am using both a hormone cream & the Triamcinolone. Tried essential oils for LS but that was rather disastrous; burned too much. The biggest issue with the steroid seems to be using it correctly. I tend to underuse anything so I may not be hitting it hard enough. Am away from my gyn for the winter, but will see her again in 2 1/2 months. Saw her x3 in 3 months, so I doubt there's anything more anyone can do for me. She takes a lot of time to explain, listens carefully and returns calls. I can't complain. Am assuming you are in the UK(?) I rarely see my GP and if I do he refers to a specialist if needed. But when I informed him of the LS diagnosis he seemed quite knowledgeable. I am 70 and have not experienced doctors trying to push pills on me, but that may because I rarely saw them and was never big on taking an excess of anything. I'm sure there is no research done on LS because till now there have not been that many cases reported. Surely it makes sense for pharmaceutical co's to concentrate on areas where they will reap the best return. Psoriasis is quite common and has inspired much research, but despite that is also incurable. There are meds, but they sound a bit dangerous. We've pulled some short straws, but there are shorter ones still. Let us know how you make out. It will be helpful as we'll soon all be dealing with the same issues.
Hi Micheline
My friend took fosamax for nearly thirty years, about 3/4 years ago a doctor said it has no effect at all!
If you are taking calcium it needs magnesium as the two work together. Calcium will block the arteries magnesium will open the arteries up. Magnesium builds the bones from within, calcium builds bone only on the outside and therefore, leaves them porous inside.
Magnesium + calcium + vitamin D all work together but needs balance. Calcium and magnesium work on a 1:1 ratio.
Micheline,
I would like to thank you and Beverley, the conversation you have been having has encouraged me to educate myself regarding LS. I have found a paper used to train doctors in LS and related conditions and treatments.
I have been told I have virginal eczema, but as that is related to LS I am now unsure. I will continue using the extra virgin olive oil as it is not damaging to the body unlike steroids and hope.