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Advice about cortisone injections??

Discussion in 'Women's Alopecia Areata' started by kjdenver, Jun 18, 2007.

  1. kjdenver

    kjdenver Guest

    Hi there:
    Since last February of 2006, I have been getting cortisone injections in my scalp every 6 weeks. I definitely notice regrowth after a few months of where I was injected, but I continue to just lose hair and I have diffuse thinning all over. A year (and then some) has passed, and I think it is time to just give it up. I know I read somewhere that if cortisone injections don't work after 6 months you should discontinue. Also, in this last round that were 6 weeks ago, I still have the indentations in my scalp where the injections were done and I don't think that that can be good, can it?
    I have no idea what I have. Every doctor says something different... I either have Diffuse Alopecia Areata, Androgenetic Alopecia or CTE. I think I have had 5 scalp biopsies done and none are conclusive. I guess my question is this.... I have a dermatology appt. on Friday of this week and I think after a year and then some, I think she should just give my scalp a miss and not do any cortisone injections. They have definitely helped my eyebrows, but I don't see that I should waste the time or money in my scalp anymore.
    Thanks for letting me ramble... I look forward to anyone's responses!!
  2. Chitown

    Chitown Guest

    I had cortisone injections about two years ago for about 8 months and they helped but the hair that grew in wasn't the same quality as regular hair, and if I didn't continue the injections it just fell out again. Plus, I didn't like the side effects (like getting my menstrual cycle every 12 days!). Like you, I also had significant "dents" in my head.

    Only you can decide how you want to approach. I chose to stop the injections and I have now tried changing my diet, taking herbal supplements prescribed by an "alternative" medicine doctor, and I occassionaly get accupuncture. Sometimes these things seem like they help, sometimes it seems like nothing helps!

    I'm proud of you for pursuing your care. Be sure to care of yourself on the inside too!
  3. kjdenver

    kjdenver Guest

    Thank you for your reply... I really appreciate it!!

    Yes, the dents in my head are troublesome and I can't help but think that it can't be good for you to do that for over a year (unless your hair is no longer falling out). I had no idea that cortisone could cause your cycle to get messed up? That's really interesting.

    Honestly, when this all started happening, I quit my job and did accupuncture twice a week and massage therapy three times a week. And guess what, my hair stopped shedding and all grew back. Now I have moved from Seattle to Denver and am really struggling to find a good accupuncturist. Plus, accupuncture and massage therapy were covered under my insurance plan in Seattle but no plans cover it here. And that gets really expensive after awhile!!

    I wondered, I saw under your regime that you do blue light frequency... what is that and where can you do that? Sounds intriguing...

    Best to you! thank you for your post!
  4. Chitown

    Chitown Guest

    Interesting that the accupuncture, etc. helped you. Yes, it's expensive which is why I don't go more often. I was trying to go every week, and that helped, but when I stopped due to the expense, the shedding started again.

    Anyway, about a month ago I started this blue light frequency. I don't know exactly how to describe it, but it's most often used for facials when the skin is irritated or acne (bacteria) is present. A woman (esthetician) whose son had alopecia (very mild, one spot I think) use blue light on him and his hair grew back. So I went to Sally Beauty Supply and purchased my own to try (about $260), and it's like a hand-held wand that I try to use about 15-20 minutes a day on my bald areas. It's supposed to reduce inflammation and stimulate cirulation. No signs of improvement yet though, but I guess these things take time. I'm sure you can find more detailed information on-line about that.

    I'm curious if anyone else has heard of this treatment or tried it?
  5. "Blue light" can give you the wallet blues

    What is the name of your product?

    If it consists of an ordinary, generic ultra violet lamp, that's just bad for you.

    If it's a plain old array of blue LED ( light emitting diode) then you've been scammed.
  6. To answer the query about real blue light therapy

    After the FDA gave approval for medical use of this equipment, there was a proliferation of fake blue light treatments. The blue in the FDA approved medical device is produced by a fluorescent light source that is specificly created to emit only a small fraction of the full light spectrum............hence the blue hue.

    FDA Approval of First Topical Photodynamic Therapy to Remove Actinic Keratoses

    New York (MedscapeWire) Oct 4 — Berlex Laboratories and DUSA Pharmaceuticals have announced that the US Food and Drug Administration (FDA) has granted approval of the commercial BLU-U Blue Light Photodynamic Therapy Illuminator, which is used exclusively in the Levulan Photodynamic Therapy System (PDT) for treatment of nonhyperkeratotic actinic keratoses of the face or scalp. The Levulan PDT System is the first to use light-activated drugs to treat these common skin lesions. Distribution of the system will begin immediately.

    The active ingredient in the Levulan PDT System is aminolevulinic acid (ALA). This new photodynamic therapy system for treating actinic keratoses is the first to deliver ALA topically; the solution is applied directly to the lesion, followed by exposure to the BLU-U.

    Approximately 40% of squamous cell carcinomas, the second leading cause of skin cancer deaths in the United States, begin as actinic keratoses. Actinic keratoses are the third most frequent reason for visiting a dermatologist. Actinic keratoses appear on the skin as rough, scaly, discolored patches and are most often seen on the face and scalp.

    "Actinic keratoses can develop into skin cancer and should be treated," says Dr. J. Richard Taylor, Chief of Dermatology at Miami VA Medical Center. "Photodynamic therapy combining visible blue light with a topical solution is a major innovation in treating this potentially serious condition."

    Three major medical groups — the American Cancer Society, the Skin Cancer Foundation, and the American Academy of Dermatology — recommend that people with AKs seek treatment for them immediately.

    The Levulan system combines the application of a topical solution (aminolevulinic acid HCl) with BLU-U to target and destroy actinic keratoses while leaving healthy skin unharmed. A typical candidate for this type of photodynamic therapy is a patient at least 40 years old, fair skinned, with more than 7 lesions.

    In clinical trials, the Levulan PDT System achieved complete clearing of all actinic keratoses lesions with 1 treatment in more than 70% of patients at 12 weeks. A second treatment, if necessary, was done at 8 weeks. With 1 or 2 treatments, 88% of patients had 75% or more of their actinic keratoses lesions cleared.

    "One of the greatest benefits to using the Levulan PDT System is that it causes few side effects and minimizes disruption of daily activities," says Dr. Taylor. "This is particularly important to patients, many of whom have experienced painful redness and scarring from other topical or surgical treatments."

    Transient local symptoms of stinging and/or burning, itching, erythema, and edema may occur during treatment with the Levulan PDT System. However, during clinical trials, less than 3% of patients discontinued light treatment due to stinging and/or burning.
  7. byardley0

    byardley0 Guest

    My 11 year old daughter has similar symptoms, bad diffuse shedding for over 10 months. Doctors are not able to tell me what it is. Initially they said, TE and then no it is not. We tried acupuncture, but no response. kjdenver, what kind of acupuncture did you try? Did they put needles on the scalp. My acupuncturist did not have experience in scalp acupuncture. We are now trying homeopathy for the past 3 months, have not seen any results.

    My derms tell me that diffuse Alopecia Areata, the hair loss is rapid, within 6 months most of the hair is shed. But I see here that some of you talk about diffuse Alopecia Areata for over 1 and half years. I am confused. My doctors don't want to do a biopsybecause my daughter is so young. Could someone pl. tell me the prognosis for diffuse Alopecia Areata? Will the shedding keep going and not stop? I have requested prednisone or cotisone lotions, but none of the derms we have seen have prescribed it. I am very concerned now and feel so helpless. I feel like I am letting my daughter down. All the doctors are asking us to do is wait and watch. Sorry for rambling and thanks for reading.

  8. kjdenver

    kjdenver Guest

    I am so sorry to hear that your daughter is going through this !! 10 months of shedding may be Diffuse Alopecia Areata and from what I have read, it could resolve completely. What kinds of test has she had done?? I am surprised they won't do a scalp biopsy but understand about not putting her on prednisone or doing cortisone injections. Those can really mess up your body overall. I don't know exactly what kind of acupuncturist she was.... she didn't do the 5 point acupuncture where they stick the needles in and then pull them out right away. She would put the needles in (and put them in my scalp too) and leave them in for an hour to an hour and 1/2). And my hair all grew back. Hard to say if it was the acupuncture but I think it was !!

    I would do all the blood tests necessary and also find someone who will do a scalp biopsy. Also, have allergy tests run. Could be a number of things causing this for her. I believe in the power of positive thinking... and hopefully with this happening at such a young age, it will just resolve itself !
    Best to you and your daughter... KJ
  9. rayneStormRN

    rayneStormRN Guest

    cortisone injections can cause regrowth, but they will not prevent new bald spots from developing, they only treat the specific area treated. at one point my hair loss was so severe that i got an injection in my arm, but a month later had enough regrowth that spot treatment could resume. good luck

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