New and just diagnosed

Hi Cheryl, glad you found us. You're probably on a graduated schedule of clob, so still on daily? I'm down to twice a week after a year and I'm pretty convinced that it's the steady tiny dose that's keeping the flares back (unlike all the other stuff we do, like oily moisturizers, which have to be put on all the time). There is such a thing as too much of a good thing. My husband has had great results from steroid nasal spray in reducing his nasal polyps so he can breathe and have a dry nose. Yesterday he didn't hear the spray, so he gave it an extra dose. His nose was stuffy and runny all day. More is not necessarily better.

Hi Morrell--So, I'm interested in your or others' opinions of when we should be backing off of the daily use of clob.  I know that medical community has a regular schedule (daily for a month, then every other day, then two times per week), but some also advise not to back off of the clob until the body resumes a normalcy because permanent changes can occur if it's not well controlled. I've been using clob daily for maybe three months at least because I haven't had the quick healing that a lot of women on this site seem to have with the clob.  I would say that I'm now perhaps 60 or 70% improved.  I still don't have the normal elasticity in my tissues and intercourse is still quite challenging, though not as excruiating as it was (maybe the introitus will always be too small now?).  And my clitorus is sore and trying to fuse, I think.  So WHEN to back off of the clob is my question.  And what are the risks of using too much?  How much is systemically absorbed--will we have systemic effects from daily use???  I haven't wanted to cut back before some kind of remission has occurred, but since this isn't rocket science, deciding when has been confusing to me.  Any thoughts???

--Suzanne

Suzanne, I really think daily for three months is too much. I followed the given schedule to the letter (using a calendar) and my remission took over six months. What I didn't do was continue to have "not-as-excrutiating' sex" . Your flared vulva is getting battered. This is a hard truth. I don't know how else to put it. It's very likely the introitus is too narrow and the longer the flare lasts, the more scarring and the narrower it will get. But each of us has different speeds of progression.

I sort of suspect that the tiny bit I'm using is just slightly systemically absorbed and that may be why my psoriasis has been clear for so long now. But it also good be the lack of the Koebner phenomenon that happens from sex.

You'll know if you're having systemic side effects. When I went cold turkey after 30 years of milder topical steroids on large swaths of skin (so a lot more than we're using for LS) I had full-blown facial edema.

Hi Morrell--Appreciate your input and will take it all under consideration.  What's so weird is that a narrowing of the introitus was my FIRST symptom this past year long before any visible signs of LS.  Went to several practitiioners who all thought that it must be menopause (even though I was on bioidentical hormones and therefore shouldn't be having vaginal changes due to menopause).  My gyne told me three months ago that the introitus looked normal and that she thought what I was experiencing was due to lack of elasticity in the tissues due to the LS--and that it would CHANGE with remission.  Well, it hasn't really changed, and I can't believe that my body just suddenly is permanently narrower with very few visible LS symptoms until the last few months. And how will I know if it's changing without testing? Does that doom me to stopping the vicious cycle of Koebner effect by never having sex again?  

Curious about your facial edema AFTER you stopped the mild but widespread use of topical steroids.  I thought that systemic steroids like prednisone cause facial edema and abdominal fat deposits while being used in larger doses.  

So you're saying that your symptoms kept getting better even with less frequent use?  

I'm not feeling any relief that I can see from other autoimmune issues and I don't notice any systemic effects from the clob, but you never know.  

Yes, I think the clob works gradually. I use it two days in a row very rarely when I'm flared up after an upset or eating sugar. You're using it daily because you're flared up continually. I didn't push this with you earlier, because there were other stones left unturned.

My gynae was overly optimistic when I was diagnosed in August 2013. Maybe this is SOP so we don't freak out that our sex life is over and suffer even more from the stress. Whatever she said that day, I went home believing that with clob and Premarin cream, I'd be back in the saddle in a few months. I heard that my clitoris would be uncovered again. After a few months I tried having sex and got that awful yeast infection the next day. By the six-month mark when I went for the annual colposcopy appointment I was up-front with the fact that having sex was off my list of expectations. When I went for the one-year appointment she was (I think) more forthright. I asked about the fleshy bridge that's recently formed across the fourchette, further narrowing my introitus. "That's irreversible" she said in her no-nonsense style. The gloves were off.

For the benefit of younger women here, Suzanne and I are both well past menopause. It's documented that women over seventy with LS never experience remission. We're in a transitional period in our fifties and sixties. And there are several levels of LS, with Hanny's the most aggressive (see her topics). I've had LS at least since I was 22 and have had several years-long periods of remission. I've had two natural childbirths and lots of good sex (and also several years-long periods of celibacy which I think worked in my favor).

If you're young and you take care, you can go into remission.

Back in the saddle--yes, that's the impression I got with the Rx for Clob and reassurance that it didn't look like there had been any real architectural changes, and so glad that we had caught it in time.  Then the following or last time that I went just six weeks later, I was informed that the changes that I had would be permanent (I'm not sure what she saw, but maybe a diminishment in my labia minora).  

So, are there other people who are getting better and are able to resume sex.  I think that I've heard from women on this forum in the past who can and do have sex.  

And if I'm staying flared (with a sore clitorus, for example), then I have to ask WHY, and should I be backing off the clob with a sore clitorus and non-stretchy vulva (though the latter may slowly get better, it sounds like it did for you?).  Is the clob supposed to stop fusing?  I just don't know what to expect with all of this.  Thanks for writing and sharing, Morrell.  --Suzanne

Hi Morrell--Just found the info quoted below on wiki about LS.  Curious what you might know about WHICH antibodies are implicated in LS (has anybody on the forum ever been tested for antibodies?), and the association with infections as a trigger.

"Autoimmunity is a process in which the body fails to recognize itself and therefore attacks its own cells and tissue. Specific antibodies have been found in LS. Furthermore, there seems to be a higher prevalence of other autoimmune diseases such as diabetes mellitus type 1, vitiligo and thyroid disease...Both bacterial as well as viral pathogens have been implicated in the etiology of LS. A disease that is similar to LS, acrodermatitis chronica atrophicans is caused by the spirochete Borrelia burgdorferi. Viral involvement of HPV and hepatitis C are also suspected. A link with Lyme Disease is shown by the presence of Borrelia burgdorferi in LSA biopsy tissue."

Also, my understanding of the lack of remission in older women just meant that we'd have to keep using the clob twice a week to keep things under control.  But do the archetectural changes keep marching on regardless?  

In females, recent studies indicate that the injection of PRP (Platelet-rich plasma) and stem cells in site may reduce symptoms and improve lesions. The usefulness of this treatment in males is under study.[24]

Whoops, forgot to ask about the last paragraph that I copied above from wiki.  Anyone know about using platelet-plasma (PRP) or stem cell tx for LS???

That's the treatment Dr. Goldstein's study is looking at. He disagrees with that Italian team who are doing two treatments at once, so it's impossible to say which worked.

Suzanne, I don't have answers. I've gotten over the disappointment and I'm just happy I don't seem to have the really aggressive version of LS. I believe it will continue to progress slowly with clob, but some of us (not all) won't have terrible flare-ups and will be highly unlikely to get cancer. I'm satisfied with that.

I know a lot of people are getting tested for 'sub-clinical' manifestations of imperfections in their symptoms and if I were ravaged by a battery of disorders I'd be playing detective, too. But I'm just playing it cool, because the best thing I can do for me is stay calm.

Would be really nice if they discovered a treatment for LS! 

I am so hoping that this will happen - a cure!  But where are the research teams?  I kept up 'the good works' but was nevertheless rewarded with an agressive kind of LS.  Count your lucky stars, dear people, when you have a slow form of LS.    

I am, Hanny. I am!