Reaction to Clob?

Posted , 14 users are following.

Hey Everyone, just a question that many of you have probably heard before. I've been on Clob for 8 days. Diagnosed with LS just recently. 1st couple days horrible burning. I know that is one side affect, but when you already have burning, more on top of it is unbearable! Day 5 I felt much better, than day 6 holy cow..... horrible burning and inflammation, redness, like before I was on it. I keep using it thinking maybe it will go away, but at this point I'm beside myself! Didn't call the doctor because

I was trying to stick it out go back in a week to see her. Should I stop using the Clob? I just want

something to work. Been on so many different things! Taking Tylenol around the clock because I'm miserable! Any thoughts?

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  • Posted

    I was diagnosed 32 days ago, hv not seen Dr since diagnosis so I hv not tried sreroids yet. However, I did order Emuaid maxx and regular  Emuaid and  put it on after every trip to the bathroom- 5-6 times a day at least. Itching gone, pain gone, inflammation gone, ulcers all healed and able to hv sex with my hubby for the first time in  6-7 weeks! 

    I know I will probably hv to use steroids to combat atrophy and soften fissures, but getting rid of  the burning gasoline pain and fire everytime I pee was totally worth it! 

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    • Posted

      Oh yes, good description, burning gasoline pain and fire is exactly how I feel! Unbearable 😰 I will look into that Eumaid. I heard pretty good things about that.

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  • Posted

    OH gosh, jpong, so sorry. 

    YOu may know that I have never taken the steroids so maybe I'm not the right one to answer this. .. except that when I was reading on here all the way back 4-6 years of messages wheN i first got on in December... I'd say I read just as many stories like yours - the burning etc ... I don't think it's for everyone...

    perhaps it's time to trust your own body.   it's screaming at you, honey. you've given it the old college try, 8 days is enough.

    Be sure to start the VItamin D3 protocol this whole deal really is an inside "job" and so a systemic (inside all over the body cells) is gonna be the most helpful. my opinion of course.  anyway it helped me rather quickly

    and when you hve the energy do ead the rest of hte things I discovered have science behnd them that help

    https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

    blessings,

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    • Posted

      Thanks Nancy, I will start to read all the information...there is a ton! I'm going gluten free now and hoping that will help with some of the inflammation!

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  • Posted

    Hi,  So sorry you experiencing so much discomfort and pain.  Emuaid Maxx has been a big help for me so far but do use the Clob when I have insane itching but just a dab.  I'm not having a reaction to the Clob.  perhaps there is another steroid you could get.  Also, When the itching and burning is bad I put very cold compresses on my crotch, then put the Emuaid and a drop of Clob together.  I am going to start using baking soda sitz baths shortly. That seems to help a lot of women too.  Hope all this helps.

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  • Posted

    Could you be over using? Need very little.
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    • Posted

      I don't think so. I use a very thin layer morning and night. I don't have any itching, but never have. Just extreme burning and I feel raw!

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    • Posted

      So I had that after my first weeks and it was fulliculitis as I over used my clobe. Thought I was using very little. Dr gave me antibiotic ointment and cleares it up.
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  • Posted

    Please keep using it. I had the same issue so much so I hated having to wee as I was in so much pain. I got a petti pot (for cleaning the nose out) and everytime I went to the loo I would use this to help neutralise the acid. It took weeks but lessened in pain. I have been to see a doc who specialises in this condition and he said not to use oils bicarb etc until it was normal and feeling better. Please keep using it as it is not well and the ointment will eventually help calm it down. Hope you feel better soon x
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  • Posted

    I can really sympathise with you because I had the same reaction with clob. First time I used it I was fine and it cleared up my symptoms.  Second flare up it did nothing to help at all. I was applying clob religiously every night too. I was desperate because I was bleeding, had a white patch and a lesion (dont know if thats the correct term) it was sooooo painful. I was poring through this wonderful forum and realised there were people out there using lots of wonderful things besides clob.

    I made a balm from castor oil, lavender and frankincense and its working! Not quickly but its working. Pain nearly gone, lesion healing and not bleeding now. I still have a white patch but its really not bothering me now.  I will continue to use the balm while its working for me. My doc approves too. She told me just to come back if/when I need to and to keep examining myself.

    I don't know if this will work for you, you just have to try things to see. Some of the girls/guys are trying aloe vera and turmeric with good reports.

    I hope you find something that works for you and keep looking in, we are all in this together!

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  • Posted

    I cannot use Clobetasol.  I used it for months without issue, and often was applying it daily... then suddenly, I started reacting to it.  I also cannot use Protopic(Tacrolimus) for the same reason.  I now use Diflorasone Diacetate, and only use it sparingly because I worry the same thing will happen with it someday if I over-use.  
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  • Posted

    So sorry you are having issues, not like there isn't enough already. I am on my second time of Clobetasol, have never had any side effects, hopefully someone will read this and have more advice. When I have side effects of any meds, I immediately call the nurse and let her know. You don't want to continue to be more miserable.

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