Hello again from Aberdeen thought i would let you know Isaw the derm yesterday and he is very surprized at how good my scalp is looking I have been using protopic for 6 weeks every night and it seem to be working not a lot of hair loss when i wash it in the morning maybe about 30/40 . Its just that its very messy but i can put up with that if its going to work .
i spoke to him about ACTOS AND LOVENOX and he was very interested in it and is going to look further into it for me , but i don,t go back to him untill December as i am going on holiday in October. so hope it continues to improve
its great to be able to go onto this forum and spek to people with the same issue and any advice is wellcome . I am still going to look this week for a hair peice just in case , but at the moment i can cover it quite good anyway bye for now and keep posting any news

GRANNYont=Andalus] [/font][color=#] [/color]

Any doctors who will treat with Lovenox?

Does anyone know of any doctors who will treat with Lovenox (or heparin) on the east coast? Or anywhere, for that matter? I have asked a few dermatologists and they have all looked at me like I was crazy. Apparently it can cause brain hemorrhaging (Ariel Sharon, former prime minister of Israel, was taking heparin when he suffered a massive stroke in 2006). I saw there was a study in Israel where Lovenox was used for lichen planus. However, I have asked a number of physicians and the reaction is generally the same. I have seen a few postings on here where people seem to indicate they've tried it and I'd be curious to get a second opinion. But if so many doctors feel it's not justified, do you think it's wise to try? Has anyone else received this reaction?

I tried Actos for about 6 months with no success. According to my dermatologist, who has a number of patients taking Actos, no one has responded positively.

Any doctors who will treat with Lovenox?

I was at my Derm today and asked him about taking blood thinners. He didn't look at me like I was crazy but he did tell me he looked into it and currently there are no active studies to join. We are in CT.

I'm not sure if I would join even if he offered. Seems to me that many people keep going from one med to another with very little success. Currently I am on Plaqunil (sp), it's been 9 months and my Derm wants me to stay on for 12. Can't say it is helping. Right now the LPP is less active....but that could mean I'm in a slow cycle or maybe it is burning out. Too early to know.

Etta

Thanks Etta. You mentioned you asked your dermatologist about Lovenox and is he willing to let you try it or is he still looking into it? Has anyone actually tried this and if not, is your dermatologist willing to use it?

Because it is a blood thinner and can cause "hemorrhagic stroke" I wonder how doctors and patients are evaluating the risk.

Thanks,

Any doctors who will treat with Lovenox?

He was only willing to have me try it if I was enrolled in an active study. According to him there is no study.

Etta

Thanks Etta. So is your dermatologist saying he would put you on Lovenox, if there is a study going on? Or that he wouldn't be wiling to try Lovenox, but if there is a study you can participate and that physician (other than him) can prescribe it for you?

Well, either way, I guess your dermatologist refused to put you on Lovenox? I have had the same experience as I mentioned - I can't find a derm who would try it. Well, if anyone knows of a dermatologist who uses Lovenox I would really appreciate if you could email me. Thanks so much.

Any doctors who will treat with Lovenox?

You are correct. Basically, he will not take personal responsibility for putting me on a trial medication I would have to join a study.

Etta

LLP

HELLO Emily i too have thought of using regaine ,but my loss is also at the front of the crown and spreading and they are only treating me with protopic cream .i have not to see the derm agin untill December and think there won,t be much left by then , This is an awful worry and gets you down every day
The docs don,t seem to know and are just trying anything.
i am interested in trying the actos , if anyone has any good results please post them
does anyone ever recover from this i mean could it stop in its tracks
any info is wellcome
GRANNY

FACEBOOK

FACEBOOK

Hi Everyone
I just open a facebook page for patient with LPP if you like to share your info,experiences and any related subject and you are a patient of LPP please search for " LPP Let's put out the fire " to join the group...
I am also a patient with LPP for the last 9 years.

Thanks
Hatcho

Hello All,

It's been a while since I've last been on the site. I've been busy dealing with new medical issues along with my hereditary disease, discoid lupus and LPP. I thought I had side effects from all the meds I'm on but it ended up being symptoms from a golf ball size tumor in my upper large intestine and possibly growths on one ovary and liver. The pathology report for the tumor should be available next week and I also have my other tests next week to check for tumors on the ovary and liver. So, hair has been my last thoughts.

Tristate, Doctors Cotsarelis and Kurt Stenn are very good specialists from University of Pennsylvania. Dr Cotsarelis mainly does research. He made a comment about the discovery of the cause of scaring alopecia helping discovery many other skin disorders. I truly believe he is right. I've been on Actos for the LPP & DLE and it is also helping my hereditary skin disease. He is conducting research on hair stem cell so he knows a lot about hair disorders. Dr Stenn has been around for a long time. Dr Jerry Shapiro is from NY Univ School of Med. He is very good but I've heard he has a bad bed side manner. Those are the only doctors I know in the East Coast.

For those of you that had questions about Lovenox (blood thinner). Most derms will fear of putting someone on a blood thinner since it's not a dermatological drug. Dr Francisco Kerdel from Miami University is the one that treated his LPP patients with Lovenox. Dr Kerdel can be reached at 305-324-2110. He also specializes in research and immunology so he knows a lot. If anyone is truly interested in trying Lovenox and have tried all avenues to convince his/her derm to let him/her try Lovenox with no success, then maybe you can convince your doctor to contact Mr Kerdel to discuss the use of Lovenox for LPP.

Enbrel, an immunosuppressant like cyclosporine and cell-cept used for LPP, is what caused my drug induced lupus leading to discoid lupus and LPP. I also think it may be a contributing factor to the tumors since my immune system was suppressed for so long which put me at risk for cancer development. My good friend works in Risk Management as a * for the FDA and is conducting a study on Enbrel and it's side effects. She said there are odd diseases caused by Enbrel and other immunosuppressant drugs with cancer being one of the major diseases. Most derms do not think twice about the side effects of cyclosporine and cell-cept when used for LPP but they freak out when you mention Lovenox. I personally think it's because they are not familiar with Lovenox. I personally think the side effects of Lovenox are less than the immunosupressants.

Boy, I have rambled and apologize. I hope I have answered all the questions.

Take care, and try not to let your hair take over your life.

Not everyone develops side effects from meds. It all depends on your genetic makeup and overall health. I've been dealt with bad genes so I'm a magnet for developing side effects.