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Allergy to Clob perhaps?

Posted , 7 users are following.

lynne1945
lynne1945

I think somewhere there is a thread about the possibility of an allergic reaction to clob, was it Morrel? Anyway, I am thinking I may be ... Have only been on it six weeks after taking Mometasone for a year. The gynae changed me to the stronger drug  as a flare I have been going through just never seemed to get better after three months. Right from the start I had such bad burning with the clob that I couldn't do the regime she recommended which was twice a day for two weeks then once for two weeks etc tapering down to every two days till I saw her again. It seemed to burn for hours afterwards. Recently I have been just applying it twice a week, but two days ago the minute I applied it after 4 days I got intense burning and in a lot of pain since. Very red all around vulva and clitorus and my urethra is bright red and of course urine stinging.  It's so frustrating as the last week I have been improving and able to go out and even swimming in a salt pool. 

I will need to go back to my GP, who won't know what to do with me 😒 But am waiting another three weeks for dermatologist in another city.

Anyone out there who can't use the Clob and is there anything else? I am rather desperate and have taken a antihistamine and of course using soothing tactics like b.soda baths and creams although even the emu oil isn't helping right now. 

Thanks in advance. 

Lynne

 

1 like, 15 replies

15 Replies

  • bennetta
    bennetta lynne1945

    Posted

    I was prescribed protopic along with clob and had a reaction to the protopic. It just made my itching 100x worse. It was awful. I use Elidel now and clob. The elidel works by itself so that's my main course.
    • lynne1945
      lynne1945 bennetta

      Posted

      Thanks Bennetta ... I will do some research on these two as not sure what elidel is... If its not a steroid I guess I need to find another steroid though, to keep things under control for the duration. 

      What a horrid condition this is! Grrrr 

    • bennetta
      bennetta lynne1945

      Posted

      It isn't a steroid but I have had success using it without the steroid at all! I'm trying to not use the steroid though, because I worry about using it for 30+ years is going to do.
    • bindey
      bindey bennetta

      Posted

      i agree benetta. Gave up after 3 years!
  • mborr
    mborr lynne1945

    Posted

    Hello

    I couldn't use the clob... It was giving me a non- stop burning sensation... My gynno doctor change it to Triamcinolone a less strong steroids and I have been using it 2x a week for more than a year now with no problem... As a matter of fact my LS is under control and if it was not for the fact that I am still using the meds I wouldn't even noticed that I have it. I also use Estrace 2x week and I rub Vaseline daily. Any "oily" product would give me the burning feeling.

    If I feel like a "flare" symptoms is coming I just increase the use of the steroids for a day or two... And the feelings subsides.

    You have to find what works for you, your unique body... I have tried a lot comfort measures until I found what is working for me... At least for now..

    • lynne1945
      lynne1945 mborr

      Posted

      Thanks a lot mborr, that gives me hope knowing there's an alternative.  I also use oestrogen cream twice a week. Maybe I will try the Vaseline too as I am somewhat tired of the constant oily inner thigh feeling I get with Emu oil. 

      Oh what envy I feel for you with your symptoms under control for now.  It's been almost four months for me with ups and downs but mostly downs. 

      The Clob definitely doesn't help me in the short term, no matter what the long term effects. If I have to spend two or three days out of seven burning my nether regions off even more than the LS causes the same I'd be better off with with nothing.  It's a puzzle and a constant daily worry trying to do the 'right ' thing and not cause a flare. I worry about my soap, my knickers (is the 5% elestane in the cotton causing problems?) I think far too much about it all the time but it's ever present right now. 

      Thanks again and good health 

       

    • mborr
      mborr lynne1945

      Posted

      It took me awhile until I got the right course of treatment... you are going to find yours... give time some time...

       

  • Morrell1951
    Morrell1951 lynne1945

    Posted

    The easy thing to try first if you've been using clobetasol cream is to ask the pharmacist for a refill, but the ointment rather than cream. Mine did that.The extra stuff they add to make it cream seems to bother some people. But then my gynaecologist switched me to Protopic. I'm happy with the results of six months on Protopic.
    • lynne1945
      lynne1945 Morrell1951

      Posted

      Thanks Morrell,  I just rang the chemist and it actually is an ointment I am using (silly me thought because it came out of a tube it was a cream, but it is quite solidish and clear) 

      She told me not to use any more, which I had already decided, and see doctor which I will do tomorrow. 

      Protopic, another thing to look up. rolleyes

       

  • kimmiesue
    kimmiesue lynne1945

    Posted

    So I can't use the Clib but for me it makes my itching 100x worse and there is no relief for about 2 days. It's awful and so I stopped using it. My main LS symptom is itching though. After reading several discussions on here though I'm thinking I need to see a diff Doctor. My GYN just told me that the best treatment is the Clob and to keep using it. I don't think she believed me when I told her how much worse it made things. Oh and I was using the ointment. I think I want to try something not quite as strong.
    • lynne1945
      lynne1945 kimmiesue

      Posted

      Kimmiesue, LS is a strange condition for sure, with nobody seeming to have quite the same symptoms as anyone else. For instance I have no itch, nor ever did I don't think, hard to say for definite, as my LS was confused with thrush and self treated quite a few times! And several doctors and gynaecologists missed it and told me atrophy with age. 

      But I agree with you that you need to see a different doctor, and if you can a dermatologist specialising in vulval health. We haven't one in my city so I will travel to another an hour away in a few weeks time. It can't come soon enough.  

      I did get hold of the gynaecologist today as my burning and swelling continues and told her about the Clob and my reaction. She said oh dear! and said to stop using it but made no further suggestion. I asked her if an antihistamine would help and she said no. It's really only helpful for itching. So that's it and boy am I glad I am going to the dermatologist soon. Do you use antihistamine KS? You sound as though it would be helpful for you. You evidently need the ones that make you drowsy as they have the ingredients required for LS relief. That's what I read her anyway. 

      Good luck with it KimmieSue X 

    • kimmiesue
      kimmiesue lynne1945

      Posted

      It is strange how one disease can present itself so differently for everyone! I have been taking Benadryl at night only and it does help. I'd like to find another one that doesn't make me quite as drowsy though so that if I need to take another dose in the early morning hours I can do so without worrying that I won't wake up to my alarm! (That has happened to me three times now!) I seem to be able to control things much better during the day. I will look for a dermatologist specializing in vulva care. I hope we have them in the US as I had never heard of that until joining this site. I also have started to think that a less potent steroid is the way to go.
    • bennetta
      bennetta kimmiesue

      Posted

      Where are you located? I'm currently in Hawaii and we have nothing. We are moving back to the mainland soon though, in Wisconsin. A couple other ladies here said there is a clinic in Missouri.
    • bennetta
      bennetta lynne1945

      Posted

      I use one called Atarax. I use it when the itching is uncontrollable and at night so I can get to bed. Benadryl doesn't work for me and neither does Zyrtec.
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