Dr. in Seattle or Denver?

[Jacquie]

I have LPP and would love to find a good Dr. in either Seattle or Denver... two of the cities where I travel on business. Or even Montana, where I live (I realize that's a less likely possibility!). Any suggestions? thanks so much!

[mopy]

Hello Jacquie,

I used to live in both Seattle and Denver so I can give you the names of my derms. I saw them for a hereditary skin disease; however, I was just diagnosed with LPP as well. My hereditary skin disease is very rare and tough to treat but I think LPP is even tougher to treat. It's like one person battling against an army. Treatment is so limited.

Here are the names of the doctors I saw when I was lived in both Seattle and Denver:

Re Seattle: Dr Philip Fleckman is the chief dermatologist at UW. He has done a lot of research for my disease; however, I'm not sure about LPP. His office no. is 206-543-5290. I would think UW dermatology would see everything.

Re Denver: Dr David A Norris is the chief dermatologist at the University of Colorado Denver. He is very good and knows a lot about hair loss disorders. He also specializes in immunology, which is what LPP is. He is the co-principal investigator for a major research program involving alopecia areata. Dr. Huff is very good as well. He is the director of dermatology. Their no is 720-848-0500.

Dr Fleckman in Seattle knows a lot about skin but I'm not sure about hair. I didn't have a hair problem when I saw him. He does a lot of research so he may not be available all 5 days of the week. I favor Dr Norris in Denver since he does a lot of research involving hair loss.

If you don't mind me asking, what is your current treatment for LPP? Also, what are your symptoms? How long have you had it? Do you know what caused your LPP?

[Jacquie]

Hello:

Wow, aren't you the same person recommending doctors in Atlanta? You're a wealth of information!

To answer your question, I have no idea what caused my LPP... It was just diagnosed in late 2008 after I'd noticed continued shedding, especially in the area on the back top of my skull, and tried Rogaine with no success. Obviously I would have seen a Dr. sooner if I'd known what it was!

I've wondered about the possibility of a medication being the cause -- almost 3 years ago, and then again a year ago, I was briefly on anti-malarial medication and I've read that there may be a connection. I was on the anti-malarial drugs for a trip to Africa and at the same time also was immunized for Hep A and B, typhoid and yellow fever, and had a tetanus shot. I noticed someone posting elsewhere on this site mentioned a tetanus shot as possibly being tied to hair loss, but I've seen no mention of that elsewhere... I also was on birth control for a number of years & don't know if that had any effect.

I've had several steroid injections in my scalp and had some topical medications prescribed, including betamethasone dipropionate lotion... and now Elidel cream. The drug info says the Elidel is sometimes used for dermatitis, which makes me wonder why I'm on it. No luck so far and the hair loss seems like it's spreading. I'll see the Dr. here again tomorrow and would like to talk with him about other medications and about whether I should get blood tests done to possibly rule out other auto-immune problems.

I have family in Denver and am always looking for an excuse to get there... so I really appreciate the Dr. names. Thank you so much.

[mopy]

Jacquie,

Yes, I do know a lot of doctors and that's due to many research projects, being on support groups, and monthly treatment for my hereditary disease, and now LPP and DLE. It frustrates me when I hear of people having medical issues and do not know where to turn or go for help. I guess God gave me my diseases so I can learn from them and teach others. Not the best result, but is rewarding which is what's important.

Yes, anti-milarias are known to cause LPP, along with drugs used to treat arthritis which is what Enbrel is and how I got it. I have not heard of birth control pills causing LPP, but I have heard they can cause hairloss. Viruses, long standing infections and penacillin is also known to cause LPP.

Did your doctor explain to you that even though you may not have a red/pink/brownish-orange scalp doesn't mean you don't have inflammation? The inflammation is underneath the skin as well so some doctors think that if your scalp is not other than white it's not inflammed. You need to get verious biopsies to see if/where there is inflammation so you know if the disease is active especially when your scalp is not other than white. LPP normally attacks the crown and vertex, and mine is in both areas with most of it in the vertex. The prednisone and plaquenil is working. Funny that plaquenil is used for LPP when it is an anti-milaria drug.

I use protopic and it works well. It takes at least 3 weeks to see any effect from it but it does work. It works with the Tcell which is what the malfunction is for LPP. The protopic works because it is applied on the surface and LPP is near the surface rather than deep, unlike other scalp problems that are deep. Elidel is like protopic so I would think it works the same. I would stick with it.

I had a tone of tests done to rule out Lupus & other auto-immune disorders but that's because I was diagnosed with both Discoid Lupus and LPP. Auto-immune tests are almost always done when someone has DLE and it's to rule out systemic lupus or any other auto-immune disorder. I had all the blood test and 24 hr urine collection done. The urine test is to check for protiene levels. My white blood count is normal but my lymphocites are low and neutrophils are high. Because the overall white blood count is normal the low lymphocites and high neutrophils are not a concern.

Good luck with your appointment. Feel free to write anytime. Take care, and good luck!

[Jacquie]

Just a note to let you know I've finally made an appointment with Dr. Norris in Denver. Can't get in to see him until December... which is a little disappointing as a I watch my bald patches grow. But it's understandable, I guess. I'll keep calling to see if anyone cancels in the meantime.

Thanks for messages. I need to take the last one to my Dr. here to show him what you said was working for you.

I'm 47 years old and was finally getting comfortable in my own skin -- with my looks, my body, my sense of self -- and then this happened. My hair loss isn't extreme yet, but I don't want to have hair loss AND a red, scaly rash on top. It would at least be nice to have a smooth head.

Anyway, fingers crossed that Dr. Norris can help. I had a tumor removed once at the Univ. of Colorado hospital and have been really impressed with everyone there. May this round be as successful.

[mopy]

Hi Jacquie,

I spoke with Dr Norris's staff. I couldn't make u an earlier appt since I didn't have your last name. What u need to do is call the office & ask to talk to Dr Norris' nurse. You need to tell her you have a form of scarrring alopecia & have just relocated to the area and are establishing dermatology care. Tell her that there is an urgency for immediate treatment to prevent permanent scarring/hair loss. Tell her that the disease process moves quickly and scarring can begin within 1-2 months from onset of symptoms. Tell her yours has been active for quite sometime. You will be assigned to a resident since it's a teaching facility; however, the resident will be required to get an attending to verify his/her diagnosis & treatment. Make sure you stress that the appt needs tonbd on a day that Dr Norris is there. The reason you should see him is because he is a leading hair specialist. He leads a study, with Dr Vera Price, in AA research. Dr Price is the founder of CARF so hopefully Dr Norris will get in contact with her to inquire about the most recent studies and treatment protocol. He probably already know about the recent discovery & treatment protocol. My hereditary disease is very rare & very few specialists r knowledgable enough to treat it so that's why i never saw a resident and was assigned permanently to Dr Norris & when he was out I saw the chief, Dr Huff.
LPP is not common and because. Dr Norris specializes in hairloss research you may be permanently assigned to him but sill be willing to let residents look and learn from you.

[Jacquie]

Wow, thank you. My last name is Burchard, in case that helps in some way to get me in. I didn't see this until Friday night, but I can call them Monday morning. I appreciate the inside knowledge... As you can imagine, I wanted to cry when I heard the appointment wouldn't be until December. In fact, I've been kind of upset since then, especially since I realized the LPP seems to be advancing onto my forehead and the hair loss seems to be speeding up. I'm tall enough and have enough left on top so it's not visible much, but the big change in looks is coming fast.

I've been on the CARF web site, so I know who Dr. Vera Price is and was really pleased to see you mention her in connection with Norris.

Anyway, I can't thank you enough. My Mom and brothers live in Denver, so it's easier for me to get there and hang out than some places. My local derm has been super helpful but admits that he's a generalist and just doesn't have all the tools/knowledge/updated research.

Will keep you updated. Thank you.

[Jacquie]

And I've been so preoccupied with my own situation that I haven't asked about you. You doing OK? You must have an ongoing LPP issue or you probably wouldn't be on this forum... And it sounds as if you have some other health problems besides.

Wish I could be as much help to you as you have been to me. Many thanks and best wishes to you!

[Debs]

Dr. Russell Caldwell in Bellevue (Seattle area). He's a derm who specializes in hair loss.

[sister1]

I want to thank folks who are recommending doctors. I can not get into to Dr. Norris until June, so I went to one of his colleagues who did not take a biopsy. I had severe hair loss after a perm and I STILL have BURNING on my scalp and significant hair loss 9 months later. Will Dr. Norris take a sample. I can not get anyone to take me seriously as I do not have bald patches. I keep being told it's hormonal because I am 45 but I have always had too much hair. I can't make any sense of this...will Dr. Norris take me seriously even though I am not presenting with bald patches?

[mopy]

Hi Sister1,

I am sorry you are having a hard time finding someone who will listen to you and/or take a scalp biopsy.

Dr. Norris is an older doctor and knows a lot about hairloss. He was my doctor for treatment of my hereditary disease which has nothing to do with hairloss. I was having hairloss from my medication and he knew it by just looking at my head and asking questions. That's when I found out he was in charge of a national study for alopecia areata. He's a very nice doctor and actually spends time with you. Dr Huff is also a good doctor that works with Dr Norris but I cannot tell you if he knows more about hairloss than Dr Norris.

For your sake, I hope you do not have cicatricial alopecia and that your hairloss is from a bad perm burn. Cicatricial alopecia is a bad disease. It strips the self esteem from you.

Keep trying to get into someone that will give you a biopsy so you can at least have closure to the hairloss.

If you have no luck getting in to see Dr Norris, you can always try Dr Megan Weber. She was my derm resident at Mayo in Scottsdale AZ. She's the one that did my biopsies. When she finished her residency at Mayo she moved back to Colorado and now works with a team of Drs at Advanced Dermatology. If she doesn't pan out you can always try the dermpathologist
that works with her. His name is Dr Amsbaugh. Their address is 1390 South Potomac St, Ste 124, Aurora CO 80012, and they can be reached at 303-368-8611. They have other locations but I thought you'd like the Aurora location since that's where Dr Norris' office is.

I hope this helps you. Please feel free to ask more questions.

[sister1]

Mopy,

Thank you for your thouhtful post, this is heartbreaking and frustrating. I asked the colleague of Dr Norris if I had that type of alopecia. He felt that I did not based on an exam. I do have slight signs of irritation which he gave me a topical steroid for. I see Dr. Norris in June which seems like a life time away...unless you feel the doctors that you mentioned could give me an equally good exam, I must just wait. I have been going through this for 9 months now. My hair dresser saw me the other day and asked about my appt and I said he felt nothing was wrong and she laughed and said, "Obviously he didn't know you before!" I brought pictures but again I freqeuntly get the age lecture. My sisters all have very think heads of hair. I also read that the type of alopecia that you mentioned can lurk underneath the skin. The derm said that I didn't have the shiny patches of skin left. I hope he's right. It is my worst fear. Thanks for writing, it's good to know that there is another person on the other end of the world that will listen.

If you don't mind sharing, what type of medication gave you your hair loss?

Thanks for writing! It gives me hope. This sux.

Sister1

[sister1]

Mopy,

How important is it to get the offical word on the type of hair loss that you have? I have had 2 derms say it is hormonal however they did not do a biopsy. I have read that some folks have seen Dr. Redmond and have had very good results. I understand that Dr. Norris may or may not take a biopsy. I have seen one of his previous residents who said hormonal. I have to tell you I find this odd as my scalp is so red and irritated. As I explained earlier I had the perm and my hair fell out. I understand that this is a common occurence. Dr. Norris's previous resident indicated that he did not think it was a scarring alopecia. He gave me an antifungal shampoo.

I also have hypothyroid and they are ruling out adrenal fatigue. I know that inspite of treatment with Armour my T3s and T4s are still very low. Has anyone else had this experience? Or can offer any advice? I have just started an extremely low dose of estrog/prog. which has slowed the hair loss but not stopped the burning scalp. I have just been wondering if I should see Dr. REdmond although the costs is quite high. OIf anyone has any advice, I am open to listening.

Thanks!

Sis

[sister1]

Mopy,

I have two weeks to go and I will see Dr. Norris. I bet he will tell me that it is AGA. My hair is getting super skinny now. I booked the appt. in April....so I am anxious to hear what he has to say.

Thanks for your help!

Sister1

[thinhair1]

Dr. Claire Haycox (Sequim)
Olympic Peninsula, Seattle area

[sister1]

Mopy,

Thank you for your post recommending Dr. Norris. I just got a diagnosis. I have a strange diagnosis. It is alopecia areata -diffuse. I don't know about my spelling. I don't have the round patches but I have a diffuse loss all over my head. The burning was the inflammation from the body attacking the hair folicle. This was my fourth derm so I really thank you for the recommendation. It helped me so much! :)) Now I can move forward with some treatment that is appropriate.

Sister1