Normal for LS or not?

Hi MIdwest Girl,

I'm here a lot and there have seen a number of posts by members who are using Protopic. From looking it up, it sounds like doctors prescribe it when Clobetasol fails or causes a bad reaction.

The suggestions for using various creams and oily moisturisers and barriers are almost always in addition to the clobetasol or halobetasol or protopic.

The only suggestions that get posted for a complete rejection of the standard medications are attempts to promote the idea that it's worth experimenting with extreme dietary changes and supplements to achieve a total 'cure'. Extremely risky when damage can happen so quickly.

Thanks for supporting the sensible way to deal with LS.

hi MwG

thanks for your contribution. I'm  in the uk and had discussions  about protopic with my medical team. i was invited to try clobetasol first.

very glad to hear you are doing well. keep us informed. i read an earlier post from you and found it useful. thanks again!

with love marey x

Hi Morrell and Marey, 

Thank you both for your comments!  

Morrell, I've seen your posts out here at lot, and they are always helpful and supportive - thank you so much.  And yes, I completely agree with you about the "sensible way to deal with LS."  I was trying to say much the same thing when I initially posted last night - but you did a far better job!  I think what I was trying to say... is that I sometimes worry about some of the posts I see on this site.  So often there is a newcomer to the site, wanting to learn about what to do after a recent diagnosis... and there seem to always be several replies concerning various supplemental creams, etc. but not as many posts concerning the use of actual medications prescribed by a doctor.  This disease definitely requires professional attention and cannot be addressed solely with home remedies, unfortunately.

Marey, I'm glad to hear you're working with a team of people to resolve your LS issues.  The deal with Clobetasol... is that if you use it every day, it thins the skin.  My dermatologist is very concerned and constantly warning me not to use it too often.  Protopic is much more effective to use around sensitive skin areas that are already thin enough, such as that affected by LS... in addition, Protopic has even been prescribed for my son to treat eczema around his eyes and other sensitive areas!

I've also read some of the others posts below, addressing a general lack of knowledge regarding LS even within the medical community - and I wholeheartedly agree.  Moreover, LS is not the only COMMON medical issue I've dealt with in my life, for which knowledge seemed to be lacking within the medical community!  Very frustrating indeed.  All the more reason for us to continue this forum...

Sending you all good wishes!!!

Thanks, MW girl, you inspired me to look up Protopic again. It's a treatment for eczema which can arise over large expanses of the body so the two longterm possible side effects (raised possibility of cancer and sun damage) don't really apply to LS treatment, because we use so little on an area the sun never shines upon.

Just to correct one point, if you watch Dr. Goldstein's presentation, he makes a strong point with cross-sectional images of healthy and LS skin, that LS is a thickening of the skin, made up of a top layer of keratinized (white) sort of dead skin, a thick layer of bad quality skin with few living cells in it and a deep 'basement' layer where the inflammatory cells are found. The ultra-potent steroid needs to penetrate very deep. This is why Dr. G. says to soak in a warm bath for 20 minutes on ointment days, then after drying massage the ointment in for 90 seconds. Thinning is actually, as he says, 'part of the treatment strategy'. However, my gynae told me to be careful not to apply the ointment (which Dr. G. says penetrates better than the cream version) in a way that when it melts it will bleed over onto healthy skin, which is at risk of thinning. The trick I think is not to use too much and to massage it in completely. Then wait an hour or so to put any oily stuff on top, so the Dermovate is all absorbed. I could see if you wound up mixing Dermovate ointment with Vaseline or coconut oil, the whole mess could go everywhere.

Here's the thread that has a link to his lecture.

https://patient.info/forums/discuss/dr-goldstein-lecture-271556

Thanks MidwestGirl

Your good wishes are very much appreciated...so too is your motivation. 

I'm a trained nurse myself and aware of the onerous responsibility of our profession. unfortunately there are complex issues at play here. These need discussion and a thorough airing....so if you have the stomach for it (!)...I'll dip my toe in these waters in an attempt to try to achieve reconciliation and better understanding of what might seem like two entrenched and separate camps (by the way I don't advocate quitting steroids without a substantial alternative or at least a reliable plan in place prior to such a step)...if I understood correctly you are concerned that mention of alternatives is coming across as a bit irresponsible. But of course you were far more tactful than to have put it like that!! Actually I'm fascinated to hear that you think the balance has swung that way...I was of the impression that folk were getting frustrated by the replays of Dr G, and that, his particular constantly repeated message was becoming bleak and alienating. (Why has Monty Python just popped into my mind!!?). Didn't one of them get "alienated"?)

I think that  it is important to recognise the limitations of the medical profession or more specifically the limitations to research and the politics of that whole area.... (I would prefer to think of doctors and nurses as being above reproach...but of course we are all human and some are going to be more dedicated than others with the odd scoundrel among us for good measure!!)....however that said i think i am less than keen on the current methodology behind research. I really do not believe that torturing animals will result in good effects for humankind. Even and including the absolute latest that supports the 'leaky gut theory'  (which its well known that I'm rather keen on - although the woman I'm following who has achieved her own cure from LS...having been discharged by her gynaecologist 5 years ago as being free of the condition....doesn't rate it!! leaky gut that is...this will please those who are interested in AVOIDING special diets ...!!)  really hope everyone's looked this up by now(!!!)....   the leaky gut thing. But  I suppose I could force myself to try to describe it in the Alt Med section...though maybe someone else would??? Pleeeeeeeease? Suzanne has already offered a very wholesome explanation which could be sought out and replicated under the heading with added references and our usual extensive and analytical plus chatty dialogues. Anyone for the endeavour of putting up the topic of Leaky Gut? This would be in Alt Med and could involve copying the pre-existing dialogue about it on this side over  to that new section? So it can be found more easily and referenced. The section has only just started and is slowly being built up on a topic arranged basis as we get to these things....with the stories of women's healing and questions and guidance on how to follow or how to find yet another way, being paramount.

This brings me...by way of a necessarily winding path ...back to your original concern MwG (I know you partly talked yourself out of it !! (by being able to see other's point of view and the short fall of medical knowledge in particular)....but I think there's more going on here than meets the eye. The whole mysogenist area of research labs and futurist gloom and horrorfying multi national plans for the future need challenging. (And you just thought you'd come on line for a quiet scan!!)

The latest research which endorses the LGT (Leaky Gut Theory...this isn't official short hand ...just mine for now) is based on the the 'Brain Gut axis' and the hypothesis has been substantiated by  medical research involving rats ...actually this needs a WARNING as its not very nice ...but leaky gut has been shown to cause leaky brain ...and in turn 'leaky brain' alzheimers etc) to cause leaky gut. This was demonstrated by causing focused damage to the brains of healthy rats who within half an hour then developed leaky guts (which previously had had healthy gut integrity).

I aim for healing myself but as is the case for many women...it won't stop there. Women and supportive men will be changing the world. Lets be part of it..........!! Phew don't quite know where that came from but now i'm going to go out and do a silly little dance and to find someone who 's good at having a good laugh and at being ridiculous!!

sending you good wishes too..and thanks for your contribution. I think you are an excellent mediator!

love marey xxxxxxxxxxxxxx

 

Hanny LS has been a recognized cause of atrophy since the nineteenth century. It's appalling how often doctors fail to diagnose it. So many women suffering in silence. I think of one I used to work with who had alopecia areata (a bald spot on her head, one of the other auto-immune disorders LS sufferers often also have) and was a lifelong celibate. I wonder if she has LS.

Morrell, at that time I was under the 'guidance' of a gyn.  It was diagnosed and 'treated'.  At the time there simply was poor guidance.  However, to connect with you, I think it also was lack of knowledge, and that should have been honestly shared.  Instead I was somehow given the impression that the glob and the premarin together were a cure.  My trust in the medical world after this experience was lowered.  Others on this site have talked about the same.  Patients should, I think, be equiped with 'the right things to do'.  Perhaps 'worse' could have been prevented.  It took me months to come to terms with my 'new self'.  Almost went under in deep depression. 

sorry to hear that you suffered depression hanny.

thank you for articulating your experience so clearly. this is precisely my objection to the high handed way patients can be misled by over zealous misrepresentation in the medical world. that said its clear our medics are under extreme pressure and have little time to spend with patients...this would not be something they would wish for.

i agree it would be extremely helpful if the limitations of the current steroid regime were more honestly presented up front....at the same time it would be wise to pay attention to the halting of further decline if we haven't yet got a regime in place which is  addressing the disease process. 

probably a combination of both is a good idea....until any alternative healing practice has kicked in and can be seen to be reliable....by the individual who is undertaking the endeavour.

Yes, it makes sense to me to try to treat the immediate symptoms to slow down or stop the permanent changes which can happen so fast, and to also try to treat the underlying triggers of the autoimmune disorder, whether through diet changes, lifestyle changes, lowering stress, etc.  

hey suzanne...so glad you decided to stay with us! how are you?

When I was finally diagnosed a year ago my young gynae was overly optimistic, or maybe I was hearing what she said that way. She gave me the clob and premarin with the hope that I would be able to have sex again. I was badly flared at the time, so, looking back, the Clob did work wonders. I couldn't stand the premarin (talk about depression!) but soldiered on with the clob. On the second visit (six months) I told her I'd improved enough that I figured sex was worth a try– then got a bad yeast infection immediately after. Now she seemed (or I heard better) less hopeful and told me it takes a 'long time'. After that I gave up on sex. Next visit I asked what that strange yellowish 1/2" bridge was over the bottom of my vagina (fourchette?) that has formed this year. She said simply, "That's irreversible". She was generally pleased with my condition, though. "No active LS".

What I take from this is that LS is extremely varied (as Dr. Goldstein said, possibly four different diseases) so when we are first seen it's impossible to say what the speed and extent of our disease process will be. After a year of treatment it's easier to see. And easier for us to hear.

To my one-year visit. I went armed with a page of info on supplementary management, questions about how many LS patients she has (1000!) and an offer to coordinate a support group.

So, we both evolve into the situation. If I had remained as anti-steroids as I was ten years ago I hate to think what condition my vulva would be in now. We can't blame our doctors for the unpredictability of the speed and extent of LS. They can't know in a few minutes whether we're cool as cucumbers or stressed-out drama queens. They don't know whether we love our tiramisu or live on adzuki beans and kale. They don't know whether we expect and 'need' to have sex three times a week.

So, yes, as one cutting-edge pediatric allergist said to me when my kids were small, 'you need to be your own doctor'. But he wasn't saying I should never return to him. So, let's not be throwing the baby out with the bath water. The prescription is correct. There is only clobetasol and for some, protopic. But there's plenty of other stuff we can do.

oh rubbish Morrell...if you hadn't have had steroids you would have found another way! You are an intelligent resourceful woman and you would have continued to search.....don't give up searching now....and from my side... I won't throw the baby out with the bathwater...ok...deal?