My LS is getting worse what more can i try

no no steriods only cortisone.

no oral medication.

im worried as it looks as my vulva does not look normal anymore.

Ann, your cortisone is a steroid, but probably milder than Triamcinilone (which is what I was put on initially) or Clobetasol, the strongest (which I use now). You should see a specialist if you can if you are noticing obvious changes. GPs do not have enough experience with LS. Good luck.

what kind of specialist if not the Gyni

Ann, I assumed when you said doctor you meant a GP rather than a gyn, although not all gyn's specialize in skin problems. You want someone who treats LS and knows about the disease. I happened upon one quite by accident and she was great, but she has left the group practice and has not resurfaced. I did go to see a dermatologist recently who treats gyn skin issues (based on comments here) to try a different approach.

Did your doctor go into detail re using the steroid?

Hi Beverley its my gyni that does not know the way forward. he has not referred me to anybody else and im desperate. i live in cape town. not sure where u are. its terrible at the moment and i have put premarin on this morning. i have a gyni app on the 16th and will ask to be referred to a derm but i fell so shy about this. definately not a nice pic to look at

Ann, are you saying he has not prescribed clobetasol yet? If that's the case I would get on the internet and print out every article you can find on steroids to control LS and bring them to the doctor. Also search for any doctors in your area that specialize in vulval skin diseases (either gyn or dermatologist). You don't want to stay with an inexperienced one. Re feeling shy, your health and well being should far surpass any embarrassment at this point.

Don't know if Tacrolimus was mentioned in this thread, but those who have used it have had success with stopping the progression of the disease. This is what the dermatologist recently prescribed for me and today my health insurance finally approved it. Do some research on that as well, print it up and bring it to the doctor. Sometimes, odd as it may seem, you have to fight the medical establishment for proper care. Good luck.

Bev, Hey...that's great news. good luck with it.

one more thing about the Tacro. while the steroid gives relief.. the tacro is a long-term thing. you dont feel better after you use it...but then one day, your skin is better. so dont be disappointed that it doest work on contact.

By long term do you mean it takes a long time to take effect or that I'll always have to use it? It occurs to me all the doctor said was to use it 5 nights, then the steroid for 2, but she did not clarify if it would tamp down the AI reaction only if it were constantly applied or if once the AI reaction calmed down I would ease off the Tac. I assumed the latter. Maybe directions will come with the tube which I'll pick up tomorrow.

It'll take about a month before you realize it's having an impact.

I'm not sure if you have to/should use it forever. I use Tac 4 nights and steroid 3 for 3 mos. But have just started to taper. I'm using Tac 4 and steroid 2 (we decided don't reduce both at the same time) Then in about a week will go to Tac 3 nights and Steroid 2. Then down to 2 and 1...then recheck.

As I understand it, the goal is to only use it "as needed". Tacrolimus is the only thing that has shown, in some cases, to actually change the cellular structure of the LS back to normal cells. If this occurs, you won't want to apply steroids to it routinely.

Finally met with the FM doc today. If we were all able to talk with our doctors for an hour and a half it would be SO beneficial. He wrote down what he felt was most important but I haven't looked over the notes yet. Recording it would have been ideal as there was a LOT of info. When I pulled out the printed info on tacrolimus he laughed, said I stole his thunder as this was what he was going to recommend for LS. He was concerned to learn I didn't have a follow up appt with the derm in 4 weeks. Will call to make one or at least to set up a phone conversation. I head south in the winter so follow up with this kind of thing isn't easy.

Sounds wonderful.

I had just such a doc in my Military base, but they're not seeing retirees right now, so I have a commercial Derm. She seems "on board", but not the same...but I've got a Derm, GP and GYN who are willing to maintain the treatment plan that she laid out for me.

Let me know how you're doing with the Tacro...

It took me all summer to find this doctor and to arrange an appointment as he was just getting into (or back into) FM and was getting set up. (Had to wait for the dermatology appt also, but not as long). The FM doc is now working with another MD at a concierge medicine office, but is also available for consultations which is what I opted for.

I'm now wondering if I should start the Tac as the symptoms that were causing me to use the clob every day for months stopped two weeks now. I should have asked him, but there was so much to ask and listen to I actually forgot!

Another LS quandary...among many!

I would. Tac is the only thing we know of that has ever changed LS at the cellular level. Why wait? And, as I said, it does have its own set of side effects for the first few weeks. Get that going while everything else is stable. That's me.

no just ointments which is not helping