Use of steroids and effects

Skin, nail and hair health
1

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.

2

Hi, Amy. Your situation sounds heartbreaking. I think your dietary changes are your best shot at keeping lichen planus at bay, but it will take time for your body to adjust. Probiotic regimen is a smart move too. You should try eliminating dairy, cheese in particular, from your diet. Over the holidays I ate cheese and am paying the price, both in my mouth and on my scalp. Some theorize that meds actually make things worse because LP likes to "win" so will pop up in different places to beat the meds' offense. 

My doc has never given me a steroid injection, only fluocininide and clobetasol solution. She said a steroid injection would help temporarily, but the LP would come back with a vengeance. Truth be told, I suspect the topical meds cause the same reaction on a smaller scale. 

Once I put heated olive oil and lime juice on my scalp for an hour, then washed it out. That helped, but who has time for that?

Dry climates also aggravate LP. 

Keep us informed of your progress, and I wish you the best of luck.

3

Did you have a biopsy that confirmed lichen Planus?  My hair has fallen out and grown back for at least 17 years. But I didn't have  LP/OLP until 2010. I did have other autoimmune symptoms over the years. I have psoriasis, which has been in remission most of my life --except for my scalp. I have flaking and bumps often. I usually use a coal tar shampoo. When I got lichen Planus, my doctor prescribed Ketoconazole 2%  shampoo. I used it but it never really controlled the bumps. I went back to coal tar shampoo which works better for me. I am on an immune suppressant for the LP/OLP (for about 1.5 years) and it is helping tremendously. A lot of people are hesitant to use the medication, but the doctor does bloodwork regularly to make sure it is working correctly. I don't want to be on it forever, but will stay on it a while longer. My hair still falls out but it grows back.  Then the process starts again. In the future I may opt for a very short haircut. I'm not ready to do that yet. 

I am am sorry you have this disease. I have learned what works for one person may not work for another. There are many theories and suggestions. It. An feel overwhelming.   Try one thing at a time. I wish there was a cure. Hugs. 

4

Oh My, thank you both for your replies. This crap is literally growing and falling out faster than one could treat for it! No, I have not had a biopsy to confirm, but I will be requesting one when the office re-opens after lunch today. That said, I'm fairly sure the diagnosis is accurate. I would hesitate to cut my hair short, because what would I cover this with?

I really like the analogy that lichen planus likes to "win" because that's exactly how it feels. Kill one spot, lichen planus has no problem- here are 20 more! I think if I lived like this 100 years ago, I'd be locked away in a straightjacket somewhere, probably scratching my head with toes! It feels like it cycles even throughout the day!

I don't know that I would take immuno-suppressents, but I can certainly empathize with anyone who does. I would put gasoline on it if I knew it would help and not kill me. I'm joking, I think...

I'm heading out to the naturopathic store for more probiotics. Does anyone have suggestions for additional purchases? I'll try the olive oil too. This disease is strange in that it drys, which heals it, then flares it right back up from being dry! I know this is going to be a battle from the inside out, but what are the best topical relief aids? Anything that might prohibit growth, slow it down, make it feel better...

Sorry for whining, I know all of you reading must have felt this way too at some point. I just feel like I can't stop touching and cleaning up hairballs long enough to research the needed info. Thank you both, and to anyone else that may have input.

5

I meant to mention that I also take Biotin, Folic Acid and Beta Caroltine.  I was taking Vitamin D twice a day for quite some time, but my face broke out all the time so I have stopped taking it.  I also take a multivitamin.  I am a vegetarian so I take Vitamin B, as well.  Make sure you are taking a multivitamin.  Vitamin D is good if your skin can tolerate it.  I am in US as well.  I'm 63 and I've had this diagnosed since 2013, though I know for a fact that I've had it since 2010.  Autoimmune disorders do not get the attention they need.  Many people are suffering from them, but because they are not always life threatening, I don't think they get the funds for research.  I hope you find an answer.  I think it is a good idea to get a biopsy to be absolutely sure it is what you have.  My hair does not fall out in clumps.  It falls out in strands all over my head.  I always have hair, but it is very thin.  Good luck and keep us up to date on your results.

6

I empathize with you as the scalp is horrible. Only thing worse is ear canal (and eye lid only because of sweat and tears.) Sounds like a Catch 22. I really feel bad for you. No clue what is causing the adverse reaction in New areas. Get into MD ASAP. Tell them it can't wait. Is the Fluocinonide .5% an NSAID ?? I can't remember. For relief, have pharmacy order in ST-37 from Norvax Laboratory. You don't need prescription. It's about $9 a bottle. Get two. Wash your head/hair in it. I'm wondering if the shot started curing the effected area and the medicine caused the new areas. Another shot might help all areas. Definitely lay off any NSAIDS. Cortisone okay though. I have no luck with diet changes. Let us know how this turns out. I

7

Thank you for the new replies, much appreciated. I have seen two MD's and a CNP just this weekend, because I THINK I had a very minor outbreak on my vagina. Prior to even seeing it, I got an infection and went to the ER. I did not suspect lichen planus at that time, I thought it was non-pregnant group B strep in my blood. I was nearly hospitalized from infection, was in extreme pain constantly, and had identical symptoms, but on a lesser scale. This presented on New Year's Eve-so 4 day weekend around the corner. I called my doctor immediately, who advised getting bloodwork done immediately to see if my blood contained active GB Strep. She and I even debated how many HOURS this could wait.

I am a sexual assault survivor of 4.5 years. I was assaulted by a stranger who was never found. I was tested and re-tested on several occasions for over one year. During that time, I met my future husband. Finally feeling like I was "safe" from STDs, I insisted he be tested. Since then, we have both been tested one more time. I believe with my entire being that he is monogamous, I know he is-he rarely leaves my side.

The CNP at the ER did a visual exam for about 10 seconds and declared I have herpes! She had also never heard of lichen planus, and could not understand that when I was talking about non-prego GBS in my blood, that I meant an infection and not the dormant kind that flares up in pregnant women. I asked for a doctor, who peeked and agreed with herpes. I know this is not true, but they refused to test my blood for GBS or anything at all. Almost verbatium, upon my insistance to test my blood, the doctor said: This is an emergency dept, where people come to have their lives saved from heart attacks and missing limbs. We treat life-threatening situations, you don't have one, no further testing is warranted. Here's an Rx for herpes meds, you should see your doctor about your elevated white count. Literally, that is what they said. Yesterday, I found out that the only tests they even ran were a urinalysis and an STD panel. They did NOT test for herpes, just whatever is in a standard swab panel.

Yesterday, (the next day) I went to a walk-in clinic and repeated everything I said at the ER-but didn't immediately tell them I had just been released from ER 16 hours prior. The doctor was an older man in his 70's. He knew all about LP and GBS. He said my vaginal problem could very well be lichen planus, but they cannot confirm that at a walk-in clinic. That is when I showed him all my paperwork from the ER. He was appauled that they diagnosed me with something they never even tested for. He did the test, results will be back this week. They don't do blood testing at this clinic, so I'm awaiting my other test results before scheduling with my regular, super-awesome doctor-who is also appauled at the ER and the way I was neglected. I am very thick-skinned, and I was a little upset. I can only imagine a sensitive person with that history... She would probably be at a psychologist right now.

On to today-I consulted with a naturopathic doctor. He gave me a reduced paleo diet and told me to do a candida cleanse and continue on with probiotics. The probiotics are 50 billion active cultures. I was also advised to use bioten scalp shampoo and conditioner, with magnesium spray on affected scalp and skin, zinc spray too-a whole 4 day routine. I'm also taking multi-vitamin, Omega fatty oil, coconut oil and olive oil. He stressed the importance of the body returning to homeostasis (normal/stable health) and then re-building the immune system. I cut out sugar, gluten, processed food and starch. I bought and began this routine today.

Have not heard back from the dermatologist, but I called late. The cleanse has many of the things named above by Sasr, and is taken alongside mega-doses of probiotics. Fluocinonide .5% is a steroid topical, not an NSAID, but thanks for that info bc I didn't know. JayeKaye-I can't imagine my tear duct-my gosh that is horrid. I did have a suspected outbreak-99.9% sure-on my nose...the entire right side and it made my eyeball throb. VERY lucky, that came and went in 5 days. I never saw a doctor because I was on vacation.

I am going to be completely proactive in doing any and every single thing I can do. The dermatologist is very Western traditional, never mentioned diet or anything besides "here's your medicine." We ALL must be proactive. I'm sure that fades a bit down the road, but for now this is a level one emergency for me. My heart is with anyone reading this. I had NO idea it could get this bad, and finding out that "this bad" is actually somewhat mild... I feel like a whining whiner knowing how bad it is NOT right now. Trying to have faith that this will improve!

Thank you all so very much, what a great forum of people!

Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

8

I am so sorry you have had such a rough time since the New Year.  I deeply feel for you being a sexual assault victim.  You seem to be very positive and in control of your life, which is awesome.  If it makes you feel any better, when I consulted medical professionals about the vaginal sores, I was also diagnosed herpes.  Not by one doctor, but by several, even though the herpes tests kept coming back negative for genital herpes.  I told them this was not possible.  I am in a monogamous relationship (45 years).  My husband is bipolar and has a littany of illnesses including dementia.  He can't even drive and depends on me for everything.  Only when diagnosed with LP/OLP did everything click into place.  Currently, my condition seems to be heading into remission.  I will know for sure in the next month or so.  It is the best it has been since I was diagnosed.  I pray something works for you.  It's also a blessing you have someone who cares about you. 

9

FYI, my daughter was told that herpes can only be identified when it's active, so if you test negative when you don't have an active lesion, it doesn't mean you don't have herpes. 

10

carolyn81368-Thank you for responding.  I had active lesions both times I was tested.  It was NEVER herpes.  I think some doctors confuse OLP lesions for herpes because they resemble it or they are totally unfamiliar with OLP.  A third doctor said I may have Bechets, which is at least closer to OLP because it is an autoimmune disorder. I  give her credit for that. 

11

Will we ever know the answers to these problems? Autoimmune disorders are so very nebulous and under-researched.

12

Hey amy, my name is rachel and I have olp/LP as well. I've tried just about everything and it's a daily struggle. I'm currently taking raw organic coconut oil pills 2x a day and I'm using elidel from my dermatologist also I got dmso gel from the natural foods store. I put aloe on it too the aloe really helps with the itching. I feel for you, I've been a roller coaster of emotions. I hope you can find some relief from it all!

13

My sister and I share autoimmune issues so communicate regularly on what works for each of us. Recently she had a bad flare-up of OLP and began brushing her teeth with baking soda ... NO toothpaste, just baking soda. After a couple of weeks, her mouth was back to normal. I was having a flare-up as well so decided to try this. Well, it made my mouth VERY unhappy. So ... what works for one does not work for another. Keep trying and see what works for YOU.

14

Hi, I have both the cutaneous (skin & nails) and erosive oral form of LP.

Had the skin/nails for years, oral for about 3 years now.  The best thing I found for my scalp was coal tar based psoriasis shampoo and lotion/gel.  I used 2% miconazole for months and that never helped (well, maybe helped the itching 10% but and the rash hardly).  The coal tar/psoiasis shampoo and lotion/gel cleared it up after about 3 weeks every time (that may be too much to hope for for everyone -- and I'm still battling the oral erosions and ulcers).  So great for the itching and burning to stop too.

Mouth ulcers and regrowth of nails were greatly helped by oral prednisone, not at all by plaquinel.  However, I got cataracts and esophogeal erosions from the pred.

Best wishes.

15

Interesting about the Plaquenil. Supposedly that works for my other autoimmune illness (I have several). I will let you all know what happens with the LP if I end up taking it. The Uceris (not as bad as Prednisone) kicked the LP and OLP out of my system so far. It's been 10 weeks for OLP and 5.5 mos. for LP. I don't have it as bad as some of you based on what I've read. I make up for that with the Lymphocytic Colitis however. : )

16

This true if they use a swab test. Blood tests will reveal dormant herpes, also. I've been tested both ways, yet again, and my condition was not herpes. The swab test can produce false negative results, but not false positive. Thanks for your input.

17

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.

18

Julia, are you the person on this site that lives in South London ?

19

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.

20

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.