Clobetasol Steroids Dangerous if I have Glaucoma?

same here!

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.

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.

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.

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.

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.

Hi Jen,

Well, you know quite a bit already and keep up the good work.

One thing, if you ever have it confirmed that you have LS, please consider applying steroids as they are the only thing that works, not to cure it but to keep it at bay, and taken long term has been found to prevent cancer of the vulva which is found in 5% of women with LS. Beverly has a link to the study she can offer you to read on this, so ask her for it.

Also, you may speak to your doctor about it, if vaginal eczema is the same as LS or related and you have to apply steroids.

Take care.

Micheline

Micheline, I have a really firm belief that there has to be an answer in a natural product. Steroid creams thin the skin if used for long periods, when I had my hip replacement last April, I told the pre op nurse about the itching, she said, go to the doctor and get some cream otherwise the surgeon will not do the op if there is any chance of infection. I did get the cream but never used it lucky I found something else.

Since using the olive oil the itching has been a lot better. I did not realize how serious this condition is/can be until I started reading the posts on here, it has made me take this itching serious as I have had it for several years.

It all depends how much you apply. They recommend using a pea-size amount only. I've been using an even smaller amount more like a rice size amount. I've been using it for 3 years now and there is no thinning or any side effects. I would rather use it to prevent cancer than not and getting cancer of the vulva.

Olive oil is a good choice for in between steroid ointment and estrogen cream usage if you're dry. I sometimes use Emu Oil if I'm going out for a fair bit of walking. But the estrogen cream helps also with the dryness. My doctor told me I could use the estrogen cream twice more a week for dryness but only topically.

Well, when you realize what it can end up doing to your structure and leave you scarred for life, you have to consider that it will take something stronger than olive oil to rectify it. She should have told you to go to a gynecologist, a Vulva Clinic, or a dermatologist to confirm if you have LS or not.

Hope all the best for you.

Micheline

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?

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.

Hi Beverly,

I also have osteopenia but not osteoporosis which is what she told me I had. She wasn't honest with me which is appalling to me. She injected me with Prolia which was refined from the drug for bone cancer for use for people with osteoporosis. It's a very powerful drug with many side effects which she didn't tell me about. I read about and researched Prolia. A lot of people became debilitated completely from it. It's a poison really. I saw a few ads of it on t.v. for a short time to my horror but they seemed to have stopped as I don't see any anymore.

I take statins 10mg because I don't know for sure. I agree with you on it. I don't think it's necessary, but I'm too scared to stop taking it, because there's heart disease in my family. The same for blood pressure. I have a friend who had to go for an operation non-related to that but they checked her blood pressure and wanted to give her pills and she refused. Today she's well into her eighties and not taking any pills and she's just fine.

I agree 100% about the lack of estrogen causing LS. My LS came on after I suddenly shopped taking estrogen for menopause. I did that because of the scare of it causing cancer. Not too smart doing that because I should done it gradually instead of all at once. Although I believe stress doesn't help I don't think it's one of the causes now. I've been stressed a lot since after treatment for LS which is well under control and no repercussions. I use Emu Oil which works fine for me and I used coconut oil before which was ok also. I have always used smaller than pea-size amount of the Clob and it stopped it. Now I can wear anything and eat anything.

I live in Ottawa Canada. I see my doctor at the Vulva Clinic only once a year. Don't have anything going on with my GP for LS. Are you having problems with LS?

There's also a Support Group at Yahoo and with this group at Patient Info and from that I've deduced that there many cases of LS. There seems to be a lot of cases now reported, probably because of the Internet and communication from these Support groups. There is a doctor Dr. Goldstein I think his name is well known for his research but that's all that's going on as far as research.

Thanks for your information.

Take care.

Micheline

Hi Jen,

Do you mean then that your friend took Fosamax for nothing? That's awful considering the side-effects of it.

Yes, I take Calcium Citrate and Magnesium Citrate. Older people should not take Calcium Carbonate because it ends up in their arteries instead of the bones. I also take every once in a while K2+D3, because the D3 helps to absorb the calcium and the K2 tells it where to go. Your info plus mine makes for a well-rounded information package!

Hi Beverly,

I did find something about the Clobetasol 17 which is the same as Clobetaseol 0.05% and I read that if you ever have to apply the steroids near the eyes, like on the neck or shoulders, etc., to be very careful you don't get any in the eyes as that could affect the pressure. So, I'm less worried about it now. Also, it talked about the steroids being applied to a large area and under a covering which doesn't breathe will induce the chance of being absorbed into the bloodstream. So that is to be avoided. To sum up, your question about apply steroids on the LS area which is far from the eyes was quite relevant in this case.

Thank you again.

Micheline

Yes, she took fosamax for almost thirty years, it did nothing at all for her bones. No one over the years told her this when having tests. A doctor told her around the time she had breast cancer.

That is shameful to say the least. I was taking Residronate before for a while, but since my experience with Prolia injection I've been taking nothing but the calcium and trying to eat right. I walk everywhere because I don't have a car. I had one injection and after I read about all the horrible side-effects online at their website even, I told my doctor then no more. That's it. When I insisted on her giving me the numbers from my bone density test she finally relented and gave them to me, I checked the numbers online and found that I didn't have osteoporosis. She kept insisting that I had it anyway. So, I left and looked for another doctor. What a horrible experience.

Thanks.

What country was this in? Sounds a bit irresponsible, unless this was before they became aware of possible negative results from long term usage. Possibly if was not increasing her bone density it was felt it was at least maintaining what bone levels she had? I would certainly have had some questions for that doctor.

Because I read of possible problems with long term use I stopped taking it as often once the bone scan results were positive. The doctor wasn't happy; said there were no studies supporting that small a dosage so I told her if my bones were in good shape I would stop completely and did. Figured if the numbers dipped low again I would use the fosomax again. I think that was about 15 years ago. So far so good.

I do take calcium and magnesium, but have read calcium is best absorbed if we take it via our diet, particularly leafy greens. I do try to eat more of them.