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Use of steroids and effects

Posted , 6 users are following.

amy22257
amy22257

Hi all, after nearly a year of trying to cure this mystery scalp condition, that I thought was severe dandruff, my hair began falling out. I saw a dermatologist and indeed it is lichen planus. That was 3 weeks ago. The doctor gave me a steroid shot, along with topical solution of fluocinonide .5%

Immediately, my hair began growing back. Layers upon layers of gunk came off, I thought I was getting better. I continued using the solution as directed, twice daily. Now, the affected area has nearly tripled in size! The original area, that stayed within itself for nearly a year, is improved greatly. All areas around it have erupted in the WORST I have ever seen of lichen planus.

I took 2 days off from using my medicine, and it seemed like the newly affected areas started to improve, but the original area began flaring up.

Does anyone have any idea or suggestion? Can the medicine be causing the LP to "move" on to other areas that are not yet affected? If that makes no sense, any ideas why this might be happening? I'm really disheartened right now, 3 weeks ago it seemed like the answer I had been waiting on, finally a solution. Now, I have more bumps than I can count and they are all active and crazy!

I'm just beginning to dig into research. I completely quit sugar and refined or processed food, and began a probiotic regimine. Is it merely coincidence that this is happening, or should I be trying to find the cause? I'm calling my dermatologist today, but wanted to ask here first. Any input, advise, words of wisdom, anything, would be very much appreciated. I'm 39 and located in the US, I'm also going bald from this, holding back tears while I type with one hand and try to soothe this crazy active stuff with my other. Really losing my mind and in tears. Thanks for any advice you may have.

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  • amy22257
    amy22257

    Posted

    I haven't logged in since my last post. The last 5 days have been much improved. In addition to a heavy daily dose of probiotics, fatty oils, multi-vitamin I am using biotin scalp shampoo, conditioner and a 3rd step scalp soother. Oh, and I haven't eaten any processed food, sugar, bread, only lean meat, fish, veggies, oatmeal for breakfast. I stopped the topical flucinonide.I must say the shampooing routine helps alot. The scalp soother is primarily aloe vera. My hair, what's left of it, if soft and silky too. It feels like heaven when I rub my scalp with it. I dry my hair with warm air and then use cool all over. I think I could do that for hours.

    Went back to dermatologist for visit 2. He's the kind of doctor that likes to not answer questions unless he is certain. Lots of "I don't know" or "I can't say without seeing it." Being the photographer I am, I compiled medical photos of all areas I suspect have been affected. I showed him and he still wouldn't comment. But, he did a scraping of my scalp and scheduled me for a biopsy on Friday. He won't tell me anything useful, but he is determined to find answers and solutions. When the results come back in about 2 weeks from now, I'll know more I guess.

    He was sensitive to how fast I'm losing my fine hair. I pointed to my ridiculous hat and expressed how much I don't like them on myself. It's very cold and snowy here. I have a photography business that doesn't thrive in Jan or Feb, so I work on marketing and plan my year. It occured to me that I can't do my job wearing big floppy hats, anything with a bill or bandanas. I think short hair would make it even worse. Oh well, enough pity party, at least it's improving.

    I do know this, for me, flucinonide makes things worse. When it's working, it works great and hair grows. Usually, it just causes my entire head to go crazy, while hair continues growing in the original spot. Then, it falls out elsewhere. Honestly, I think I'd rather lose my hair than deal with LP.

    • JayeKaye
      JayeKaye amy22257

      Posted

      I still think, Hon, that it could be the solution base and the not the actual steroid itself. That would explain why the one area got better -- there was nothing left for the solution base to kill! We all wish you well with this. You could start a creative floppy hat photography campaign and target women (and men & kids) on chemo. Then when you take your hat off, they will feel right at home !! I'd send advertising to your local Alopecia Support Group and run a promo in a Women's Magazine with a 15% discount. Also leave flyers at wig and hat salons. I'm just sayin' . . . sometimes we gotta make lemonade.
  • amy22257
    amy22257

    Posted

    You're very kind. I know I need to get out of self-pity mode when these things are happening. You make a good point about the steriod and one I hadn't thought of. Yes, it worked and worked great. Maybe there is something else going on too. I'll have my answers soon. I'd probably feel like smacking myself even comparing my hair loss to that of chemo. But, what a great reminder that it's not as bad as things could be. I sell beauty and confidence in my business. I more worried about my money than my hair, I think. Either way-onward. I'm not giving up on my steroid, just seeing what happens without it until biopsy.
    • JayeKaye
      JayeKaye amy22257

      Posted

      Smart girl. I'd give up on it too. There has to be something else going on or something better to use. Are you going to get discouraged if the Biopsy isn't helpful ?? Dumb question. I should have said, '"Dont get hopes up too high. Results may come back inconclusive.". But we will be here for you either way.
    • amy22257
      amy22257 JayeKaye

      Posted

      Biopsy is 6 hours, yay! I had a good 5+ days or so without anything new happening and now it's back. Sigh. It really does seem like I have two seperate and distinct conditions happening simultanously. However, what I think is secondary is active right by the original area. I'm going to ask if they can sample an area that includes both types or take two samples. I sincerely hope that results are not inconclusive, I hadn't considered that so I'll just have faith that it won't be.

      With everything going on, I really question why nobody seems concerned with blood work. Seems a bit backward to be testing from the outside in, but not the inside out. I had several blood tests done back In July, including tests to rule out some autoimmune disorders-not sure which ones other than RA and lupus, but all was normal. I have so many questions I can't remember what I'm here to ask. Lol, too much on my mind I guess. Thanks for the support, hope you're having a good day.

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