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Is CLob safe? your experience

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OutInSpace
OutInSpace

Has anyone had any negative effects using clob? I still havent used it and my white spots and scarring is flaring up again, im kind of scared to used it as ive read its absorbed into the body and can cause other problems? Did anyone have any issues while using clob? I know i asked before how long it takes to work aswell, but things are getting ontop of me.

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  • deethebee
    deethebee OutInSpace

    Posted

    I have not had any negatives effects from it.  When I first started using it, it was such a relief and I saw improvements fairly quickly.  I now only use it to stop flare ups but its good to get things before they get out of control.  My gyni said there are alot of scare stories out there about steroids and my naturopath would say otherwise and that is bad but we have to do what we feel will assist us in our day to day control of the disease and this is very different for everyone.
  • j02359
    j02359 OutInSpace

    Posted

    Please don't be scared to use it: it will get your LS under control and get rid of those white patches.  I trust my doctor about this and have had no ill effects.  Every best wish. 

    • OutInSpace
      OutInSpace j02359

      Posted

      Hi, i also have raised white scarring, will clob help clear this also? Thanks
  • lynn_78641
    lynn_78641 OutInSpace

    Posted

    From my experience I can say it’s the strongest possible steroid ointment you can get so use Sooooo sparingly and don’t listen to anyone who tells you to lather it in. It’s dangerously addictive to the body, so just be aware of this. That means don’t use much and don’t use for too many days in a row. if you are given the prescription to use a couple times per week that’s ok but if used daily stop after one week and work your way down. Always always always wash hands carefully with soap after application as it gets into the blood stream. And only use when you need it. I use it now twice a week. I tried going off completely for two months but the white patches came back. It does slow down fusing and atrophy too but I suggest using in conjunction with a skin moisturizer like coconut oil, olive oil or emu oil. Hope this helps 
  • brenda12750
    brenda12750 OutInSpace

    Posted

    I'm using clob 2 times a day morning and night and I just had a gun appt Monday for me to have a vulva byopsi and she told me I was 60% better than i was 3 weeks ago using clob. Plus I told her a night I use 1 tsp baking soda and 1 tsp of Epsom salt and 1 tsp of Aveeno in warm water mix it all up and put in a plastic squirt bottle and while I'm on the toilet I let the water run down you and it really helps with t JFK e itching plus I have no blisters now.

    • brenda12750
      brenda12750

      Posted

      Gun appt I don't know why this crazy I pad getswere it don't copy my words right

    • beverly52803
      beverly52803 brenda12750

      Posted

      What does the JFK refer to? Assume that was also a bizarre autocorrect. Have you been using the steroid twice a day for three weeks? Do you know how much longer your doctor thinks you should use it?
  • always_somethin
    always_somethin OutInSpace

    Posted

    i just used it for 10 days and i had to ween off of it for several reasons.

    1. it was doing NOTHING for my white spots and itching.

    2. it is an imunosuppressant and i have herpes and it created a TERRIBLE outbreak which i have NEVER had this bad. Ive also been outbreak free for years so.... i know it has to do with the clobetasol.

    after weening off... the itching i have now is way worse than it was before.

    maybe it works, but i wasnt able to give it the full run time to see any benefit because it created a different problem for me.

    My doctor says its safe, and if i didnt have a H-outbreak, i wouldve kept the medication going.

  • hanny32508
    hanny32508 OutInSpace

    Posted

    I would sure encourage you to use the clob in first instance to get LS under control.  But make sure you use just a very thin layer.  Once under control I would also look at other options.

    For instance:  I rarely use clob anymore since the time I started to do baking soda or borax baths. (1/3 cup for the baking soda in a full bath, less for the borax)  Next is: your diet.  Very helpful to me was the cutting out of all added sugar, no more gluten, no alcohol, no caffeine and limited dairy. (cheese was also a trigger)  The list might look different for you, but well worth testing things out one by one.  

    Another:  I rinse after most bathroom visits with a few pinches of borax in my Perin bottle.  Helps 'refresh'.  

    Hope this is of help.

     

  • karen23320
    karen23320 OutInSpace

    Posted

    I too was resistant to using steroids and had my sumptoms under control with homeopathis ointment and dietary changes- BUT, Dr Goldstein , leading LS specialist, has a webinar that explains that if you don’t use steroids and rub it in for at least 90 seconds to penetrate the dermis and attack out T- cells that are attacking us! I ysed Clob 2x a day for 2 weeks and white patches are gone, I am in remission now and I continue to research my diet, gut health and anythi g that will help me keep this disease and all disease at bay! 

    So I say yes, it is important to use, for the time prescribed, in a major flare, but I DO NOT agree for maintenance- too strong! 

  • beverly52803
    beverly52803 OutInSpace

    Posted

    OiS, I use a weaker steroid,Triamcinolone Acetonide 0.1% and was using a small amount on the figure 8 area every night for 2 1/2 months then had a reaction. That  may have been due to having diarrhea that day which caused some fissures or by my using too much that night. I stopped using it as my gyn was away. Since that time I have spoken with her and she suggested I try again since I've had weeks of not using it.

    However, I have since purchased an essential oil blend (lifeway) formulated by a woman with LS who claims it has worked for her. The oil initially burned a LOT, but was advised by a poster here to mix it well. I now use some coconut oil as a base before applying the essential oils. Have used it for 1 1/2 weeks. I have no idea if it's working. The most difference I feel is possibly more of a tightening feeling on the clitoral hood. That may just be  paranoia on my part. I never knew I had a problem other than an internal itch which was not an LS issue. The only thing I could see was a faint white line on the inner buttocks. The gyn said there was some white area inside the labia majora, but I can't really see it.

    I may try alternating the oil with the steroid just to avoid using the steroid or oils for  a long period. My doctor's opinion is that steroids are good for unhealthy skin and harmful to healthy skin. It all seems like trial and error and differs from one person to another. I have seen my gyn twice since the end of May; next appt is in October. I may ask to see her sooner just to be assured things are improving or maybe improved enough that I should stop the steroid. I am also using a small amount of estradiol nightly for atrophy. Have you been diagnosed with atrophy as well?

  • helen34256
    helen34256 OutInSpace

    Posted

    It really all comes down to start with clob until you notice improvement.

    That means your white spots and itching has improved.

    Don't use clob for a long period of time. Regardless of what Dr. tells you that it's ok to keep using it, no it's not. It

    thins the already delicate skin in the vaginal are. You don't want it thinning any more.

    See website :An Experiment with Borax" I think thats it. But change to borax solution once you notice an improvement.  (20 Mule Team Borax, in laundry isle) use 2 tsps. in 4 cups warm water, stir to dissolve, put in a bottle & use it when you go to the washroom. Spray it or just get it on the area however you choose. I can't say it works for everyone, but a lot of comments here say it works wonders. Use Organic Coconut Oil as a moisturizer. Or other oil. I haven't used anything now for a lot of months. I thank God for the no itching. Such a relief. Now I just use warm water when I go to the bathroom to keep things clean.

    I hope you find relief soon, it's a horrible disease. P.S I also changed my diet drastically. I do Keto and I know it helped with avoiding all sugars, all grains (no bread, pasta, anything with grains.) And sugar is the worst culprit.

    Use MCT oil organic naturally.

    You really have to be your own advocate.

    Good luck

    • lynn_78641
      lynn_78641 helen34256

      Posted

      Yep i agree fully with Helen on everything. Especially the steroids comment. Steroids are great for unhealthy skin if used extremely sparingly. I know many people suffering from topical steroid withdrawals and the main sign is severe itching and the loss of ones ability to produce their own natural cortisol - so yes, use only when needed and then stop. My only challenge is that although the “experiment with borax” article was helpful and has worked for so many, and I now use it in my daily resume- it does not restore my white patches back to flesh tone nor has it done anything for my atrophy and fusing. It simply relieves itching and keeps the area more ph balanced. I tried it for a month and after one month the area was still the same. I also tried the product that someone has posted about (but her posting was removed because she mentioned the name- thanks admin!) and I also use it daily but it alone or borax alone (at least for me) are not enough 
    • helen34256
      helen34256 lynn_78641

      Posted

      All true. But it took me 3 months of using borax before I got to this point. A lot of ladies say it helped with fusing etc.

      So, one really has to persevere. I agree, it doesn't work fully for everyone, but it does help. Using for a month isn't enough. It took years to develop LS. It takes months to show improvement.

      The thing is, you can't give up. Just keep trying.

    • beverly52803
      beverly52803 lynn_78641

      Posted

      Try using no caps when mentioning a product. The moderator is totally inconsistent. For instance Aveeno is the name of a product but that post was not blocked. There are many, many posts with brand names in them that get through. You would think we were trying to trade state secrets rather than trying to help each other out by sharing names of products that may have worked for some of us. 
    • helen34256
      helen34256

      Posted

      Anyone try Perrins Crème Complete? They say it helps, but stinks to high heaven.

    • beverly52803
      beverly52803 helen34256

      Posted

      I tried washing with a bit of baking soda in water, It felt fine initially, but then started to feel very drying so I stopped. Have switched to a bit of salt in the water, That seems to work better for me. I use it more for the BV that pops up once or twice a week (due to hormone fluctuations affecting PH according to my gyn). 

      ?I am lucky in that I don't have the extreme discomfort or symptoms some report from the LS. What I did feel I attributed to the AV until the gyn diagnosed me with LS. I searched for that white line today, but no longer see it. Never saw any other whiteness, though the gyn said she saw some. I think the light she used would have lit up outer space!

      After menopause I developed a severe frozen shoulder that lasted for 3 years. That is also thought to be an autoimmune disease and no one understands it. I have read it affects women primarily after menopause so we can add that to our list of mysteries and miseries! 

    • karen23320
      karen23320 helen34256

      Posted

      Hi Gelen- Right after the biopsies, when I was still very raw, the aperrins stung a bit. After a few days, the sores were healing and it did help with pain and itch- but it DOES STINK! All the grapeseed oil made me feel like a merlot- marinated steak. If you can get past the smell it is good. I prefer Emuaid Regular. Emuaid maxx has 10x the tea tree oil and is very strong! 
    • karen23320
      karen23320 beverly52803

      Posted

      Beverly- i cleanse that area with only three things- plain water, cetaphil gentle cleanser or emuaid moisturizing bar. Hv never had any problems wth either of them . If I do take a bath, I make sure the tub is completely clean and add 1/2 cup baking soda to bath water- very infrequent, then moisturize as usual with coconut oil or emuaid or Yes. 

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