my hair has been slowly falling out for months. but this morning i noticed that it has become a MUCH FASTER process. my doctor says all this is in my head. (he is new) and sent me to the psyciatrist who feels that my prob is mostly physical and NOT in my head. i used to have too much hair for two braids now i do not even have enough for one. this is really upsetting me, and i have no idea what i can do to stop this. i see the dr tomorrow but all he will do is ignore my concerns and tell me i need psyciatric meds. does ANYONE know anything that will help and that doesnt take much money. my husband has been cut back to less than 20hrs a week and so we have so little money we cant pay for the medicine to help me sleep. (the only med my doc will prescribe, although he did give me samples of alergy meds and a nasal spray at my last office visit--one of which caused a major headache and mild rash) thank you.
my email is KaitlinAnneBowerman@usa.net

Sailormoon:

I know that some medications can cause hair loss. I have always had thin hair, but it is much thinner since I was diagnosed with Systemic Lupus Erythematosis/Scleroderma Overlap. That big word causes big misery.
I take Methotrexate, Relafin, Folic Acid and Fosamax for my Lupus. Plus, I take Norvasc and Accupril, plus a baby aspirin for my high blood pressure. I also take non-prescription Citracal with vitamin D and vitamin E. I'm sure all these meds are what is making my hair so thin. I don't like taking medicine, but I sure don't want to get back in the shape I was when I was finally diagnosed with Lupus/Scleroderma.

If I were you I would quit taking the meds to make me sleep. Sleeping pills are very addictive and I, myself, never felt that they did me any good at all. I took them a few times when I had such bad joint pain that I couldn't sleep, but I really don't think they helped me at all. It would save you money to drop them. I found that a soothing tea made from a cup of distilled water with a teaspoon each of cider vinegar and honey would help me to sleep. Mix it and heat it and drink it like hot tea. NO, it does not help your arthritis, but it did make me sleepy so that I was able to drift off. The only thing you have to lose is a teaspoon of vinegar and honey!

I don't know of anything to do about the hair loss and don't know anything that will make it grow back. Worrying about it only makes things worse.

Sailormoon,
I haven't experienced any severe hair loss, but we're all different. Are you still seeing the Rheumatologist in June? If you can, I'd suggest you stick with him and don't go back to the internist. We'll all pray that the Rheumy is a good one, if you still get to see him. I'd also suggest that you get copies of all your lab tests and keep them for your own comparisons.
Take care, Ann

AnnS,
I do see the ruemy in june if i can find a ride. also the internist is handling my depo shots so i cant stop seeing him. he also tries to get my meds for me at low or no cost. so he does his best he is just a kid who doesnt want to go against another doc. unfortunately i am not on any meds for an autoimmune disease. so that could not be the problem. infact the meds i am on are mainly just to say they are trying.

Irish,
my meds are very few (although high cost) and none have the hair loss side effect. as to the sleeping meds, it is the only way i do sleep and also it is to help with an axiety problem that started about the time i realized how much hair was falling out. I know it is adictive, but at the low dosing i am on they feel that the risk is worth the benifit to my health. without the meds i sleep less than an hour a day with i sleep 5 maybe 6. i still wake up if i move due to pain, and i still suffer with severe pain all day anyway. i am not being treated for any autoimmune disease at this point becaus emy doc doesnt feel he can treat something that he has no clue what it is and also because he refuses to do any more tests. i take ulcer meds, vioxx, anti depressants, the anxiety/sleep med, and sometimes when i can afford it flexerol- which does nothing but the doc insists i keep trying. vioxx does little for the pain. the antidepressant is mainly because my internist insisted my physical probs are mental and the psyciatrist wants my physical probs treated and hoped this would get that done. nothing so far except an admitance that blaming the type of physical probs i have on my mind is silly.

for everyone,
the hair loss is slowing somewhat, but has not stopped. my physical health continues to deteriorate. i get weaker the longer this goes on. i can no longer hold a pen or pencil. i am developing bruses and sore spots from the slightest touch. i am getting more and more frightened that i will never get treatment. i am at a loss as to what to do. the ruemy's receptionist said she usually just reads your med records talk to you and says go back to your internist. this sucks, but she is the only one i can see because i do not have insurance or much money. i will hope that someone will do something, as i watch my ability to walk slip away. my legs colapse under me if i walk less than 3 blocks. shopping has become impossible, and yet per the internist i am not sick. how bad does it have to get? is this normal? am i supposed to be this weak? shouldnt i be able to walk w/o my legs giving out? and why is it that no one believes me? i have the butterfly rash, have had for months now. i had pericarditis. i am getting worse. yet nothing is being done. i am getting very worried as to what is happening to my body. can anyone out there help me?

Sailormoon,
Here are some sites I ran across on another board that might help you. I haven't looked at them myself.
Free or reduced cost medication sites: http://www.nami.org/update/freemed.htm http://www.themedicineprogram.com/ http://www.windsofchange.com/meds.html http://www.phrma.org/patients/ http://neuro-www.mgh.harvard.edu/neurowebforum/ParkinsonsDiseaseArticles/ Freemedicationavailable.html

Also, here are a couple of articles I read yesterday that might help you determine you illness. Hair loss is mentioned. They're mainly on FM, but have some good overlapping stuff with other autoimmune diseases.
Hope this helps some, Ann

I have had problems with hair loss for the better part of five years. I recently made a few posts on this board, but I'm new to it. Let me say that I have not been diagnosed with clinical lupus because I have never met enough of the criteria, but my doc does feel that I have an immune system problem of some type. As for the hair loss, mine started when I developed a very itchy red inflammation in my scalp. I have used numerous prescription meds, and none of them ever mad the rash go away, and some of them aggravated the hair loss. Stress and different meds can make you lose more hair. I know that this sounds simple, but try to relax about the hair loss. There have been times where I was shedding so much hair that it was everywhere in my house--even in the food I would prepair. It's been five years and I still have hair. It's thinner than it used to be, but never the less I still have hair. I have found that shampoos that do not contain chemicals are less irritating to my hair problem. They can be purchased at a health food store. I buy one that is 80% aloe vera because its good for the skin. As for the sleep meds, I can relate because I've been taking meds to sleep everynight for months due to severe problems with itching, but I too think this is not a good idea and plan to stop. Melatonin (spelling?) is a natural sleep inducer that is not addicting and can be bought at a health food store. Ask your doctor if this would be a good alternantive to an addictive substance. Also keep in mind that antidepressants can cause insomnia. I don't know what you're taking, but ask your doctor. Your message sounded upset and a bit desperate. I can relate because I have had a number of very bad problems during the past year with no firm diagnosis except thyroid disease, and my problems go beyond that. Hold on for a good day, I usually have one eventually. Good luck. Susan

AnnS
thank you for the site info. my doctor tries very hard to get me the meds from the companies, but a few just aren't available that way. so i pay for those. bad thing having to pay for meds when you cant work. i am hoping that sometime soon i will see more of a difference in my hair loss. as to a diagnosis, we are fairly sure of my problem being sle/lupus, but there is a chance of mctd/mixed connective tissue disease and one other ai that i cant recall. and with blood work not showing us anything.... it doesnt help. also my lack of insurance limits the quality of doctors i get. i am hoping that soon my income level/insurance availablility will change for the better. i just hate feeling so poorly and being so weak. worse still the wedding is less than 2 mo away (i am married, but the actual family wedding dress and all had to be delayed) and my hair is supposed to hold up the veil. that scares me a lil.

SusanM
thanks for the suggestions. right now we are being careful with natural suppliments because i am allergic to everything, including every antibiotic i have ever taken. this makes life difficult as to what can be used. the hope is that the sleep meds i am on now will not prove addictive at the dossage i take- which is less than 1/2mg and usual dosage is at least 1 1/2mg. so maybe i will get lucky. if i can get effective pain relief the sleep meds will stop. because effective pain relief would end my sleep problem. the antidepressant i am on has the side effect of drowsiness because i am allergic to the insomnia ones (like prozac effexor and paxil). sometimes being allergic to everything is benificial.

for everyone
i am still trying to convince some people i am ill. but may have something on my side. the really bad part is it took my son dying for anyone to realize that maybe i was telling the truth. i saw a geneticist yesterday because i have had two children die for no apparent reason. i was told that a couple things were possible but what the geneticist suspected was that my illness had affected the baby while i was pregnant and caused a problem that led to death. the other possibility is a metabolic problem that was not tested for (unlikely but possible). another unlikely but possibly cause is some type of genetic defect that has not shown itself in any other family member and that is recessive- very unlikely because the two babies had different father's. so basically i have a doctor telling me that by not treating my illness my former doctor may have killed my son. odd thought. and i have to question why it takes two children dying to get someone to listen to what is wrong.

------------------

Dear Sailor-

Hello, i have had Lupus since i was 19...i have taken everything from Immuran to Methotrexate and Lodine...none of them worked for my extreme joint pain. It was so bad that i could not really get out of bed,or walk to the bathroom without much assistance. My dr tried Arava...and i will tell you that now i can walk and clean my house again! It had been the only salvation. I would ask your dr about it. It is a DMARD a Disease Modifying Anti-rhuematic Drug...and it is usually used to treat rhematic arthritis...but in my case it kicked my lupus's booty! I still take a low dosage of prednisone..5mg. And i also take Celebrex, the Viox did somethig wierd to my gallbladder so i could not take it,and i take Prevacid for stomach ulcers and sometimes i take Ambien to sleep..very low dosage 5 mg and usually i take only half.
The only bad thing is that Arava is rather pricey...but i would highly recommend trying it. I think once you get your lupus under control your hair loss will slow down. I lost alot of hair while my disease was running rampant with the fevers and not eating very well cause all i did was sleep...but now that it is more under control the hair loss stopped and it has grown more and is like it was before all that happend. I still have some bad days, but not nearly as bad as before. I hope this helps you out. Let me know.

unfortunately my internist refuses to treat me as an AI patient, let alone a lupus patient. he acts like i am insane and says take my antidepressants longer and i will feel better. the psyciatrist who prescribed them only did so in an attempt to get me treated for the lupus. i have the butterfly rash and have since january but noooo that is caused by my mind. at least that is what my doctor thinks. when my ANA turns positive he will treat me, but he sees no reason to run the test again. i begged for something for the pain or hair loss, but nooooo i am imagining it all even though he saw handfuls come out in his office just by my running my hands around my hair gently. i am frustrated, and the skin behind one of my ears is falling off and i have developed another sore in my mouth. i am so tired and weak lately. and i have collage classes and a wedding coming up, and two children.

Dear Sailor-
Well in my opinion you should see a different dr. Because lupus left untreated only causes worse problems later on. If your dr. does not respect your ability to know that you have something wrong with you, then what good is it for you to continue seeing him/her. Is there another dr. you can see? A second opinion sounds like a good thing to me right now. I have had some cruddy drs in the past...and they did me more harm than good. If there is someone else you can see, i would highly recommend it. But that is up to you and i don't know all the circumstances. But if you feel you are not being treated properly, well you probably are not. Good luck to you and take care.

i am, seeing a ruemy in june, i actually was able to find a way to have my husband drive me to the medical center (over 4hrs away) so that i can keep my apointment. so i will have a second opinion. funny thing i went in for a refill on my allergy meds and my internist informs me that the butterfly rash i have had off and on for months is only acne (i do not have pimples in this area just redness) and that if i pretend i am okay i will be okay and all the problems will go away. i have decided he is worthless, too young and cocky for his own good. thinks that if he says there is nothing wrong it is impossible for him to be proven wrong even though i was able to prove i get the mouth ulcers. all he is good for is my allergy meds and i am looking for a better way to get those as well. i am so sick of incompetent fools, it was a doctor like him that let my son die in december. i finally realized that i do not need to listen to him say it is all in my head when i have two people in the mental health profession that i am seeing telling me this is not in my head i have a physical problem. i plan to ask around to see what i can do about getting a new internist, i just hate to have to drive 4-5 hrs everytime something goes wrong with my health.