Alopecia World
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Using Enbrel, Humira, and other immunosuppressants
Good morning everyone,
I'm not one for usually contributing to this particular category of discussions, as I don't take any kind of treatments for my alopecia anymore, but as I've been watching TV I've had a question that I just had to ask -- and I really do wish we had some doctors on AW so we could get the benefit of their expertise for some of these questions!!
A lot of the immunosuppressant drugs out there, such as Humira and Enbrel, are proven remedies for treating rheumatoid arthritis and psoriasis, which are also autoimmune disorders. I'm just curious as to whether or not anyone has researched these drugs' effectiveness in treating alopecia, and if so, what was the success and failure rate? It never ceases to amaze me that nobody thinks to treat an autoimmune disorder with immunosuppressants; rather, the traditional protocol of steroids and inflammatories (which almost always yields little to no results) seems to be the status quo. I would subject myself to treatments again if I knew for certain that there was some research and success with something like these medications out there that REALLY work.
Any insight on this subject would be greatly appreciated.
I'm not one for usually contributing to this particular category of discussions, as I don't take any kind of treatments for my alopecia anymore, but as I've been watching TV I've had a question that I just had to ask -- and I really do wish we had some doctors on AW so we could get the benefit of their expertise for some of these questions!!
A lot of the immunosuppressant drugs out there, such as Humira and Enbrel, are proven remedies for treating rheumatoid arthritis and psoriasis, which are also autoimmune disorders. I'm just curious as to whether or not anyone has researched these drugs' effectiveness in treating alopecia, and if so, what was the success and failure rate? It never ceases to amaze me that nobody thinks to treat an autoimmune disorder with immunosuppressants; rather, the traditional protocol of steroids and inflammatories (which almost always yields little to no results) seems to be the status quo. I would subject myself to treatments again if I knew for certain that there was some research and success with something like these medications out there that REALLY work.
Any insight on this subject would be greatly appreciated.
Replies to This Discussion
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Permalink Reply by Rose Marie' on
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Hi Kasta
I'm not overly knowledgeable about this sort of thing either but Susan (with the strawberry blonde hairpieces) has a heap of information on this sort of thing.
Try having a wee chat to her, she very good and truly has a heap of knowledge.
Rosy
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My husband took Enbrel, now on Humira. I can tell you that insurers would fight us on this one. These drugs are expensive and my husband had to "fail" on many drugs for many months before the insurance carrier would pay for these. Your doctor may consider the side effects too dangerous (since unless you've walked in our AA shoes, why would you think we would be DESPERATE for help with just some little "hair loss problem!") and not even consider it.
I just posted a blog on my meds. I'll see if I can re-paste it here. I was googling my meds since I wondered if some might cause hair loss now that generally thinning is joinng in with my general patches! i take meds for high blood pressure, simvastatin or zocor for cholesterol and an antiinflamatory for shoulder pain. this is what I found (apaprently all mine may contribute to hair loss!): - I will try and bold the immuno parts.
A relatively large number of drugs can cause “telogen effluvium,” a condition where hair is shifted into a resting stage and then several months later shed. Fortunately, this shedding is reversible if the medication is stopped, but the reaction can be confused with genetic female hair loss if not properly diagnosed.
Here is a list of a few examples of prescription drugs that have been reported to cause hair loss:
1. Drugs to lower cholesterol
There are many cholesterol-lowering drugs that pose a danger to cause hair loss. A well know example is Lopid.
2. Blood Pressure medications
Some beta blockers have been reported to cause hair loss
3. Anti-inflammatory Medications
Anti-inflammatory Medications are drugs used to relieve inflammation and fight pain. Relafen, Clinoril, Voltaren, Nalfon, Rofecoxib, Celebrex, Lodine, Orudis, and Indocin have been reported to cause hair loss as a side effect.
Simvastatin - Immunologic side effects
Immunologic side effects of simvastatin have included a case of lupus-like syndrome which has been reported with other HMG-CoA reductase inhibitors. Other immunologic side effects reported with HMG-CoA reductase inhibitors have included positive ANA, ESR increase, polymyalgia rheumatica, and vasculitis.
The following additional adverse reactions have been identified during post approval use of Simvastatin: pruritus, alopecia, ………..http://www.drugs.com/pro/simvastatin.html#section-6
An apparent hypersensitivity syndrome has been reported rarely which has included some of the following features: anaphylaxis, angioedema, lupus erythematous-like syndrome, polymyalgia rheumatica,
Diovan: http://www.drugs.com/cons/diovan.html
Other side effects may occur that usually do not need medical attention.
Incidence not known: Hair loss; thinning of hair
Zocor http://www.druginfonet.com/pi_mfr/ppi/merck/zocor/zocor.htm
Side effect - Hair loss
Any drug such as a statin, which can cause up to 50% lowering of blood cholesterol, has to have an impact on hair growth and maintenance simply on the basis of less cholesterol to go around. The fewer building blocks the less stable the resulting structure, which in this case is hair.
A second mechanism by which statins can contribute to hair loss is because cholesterol is the building block for the major hormones: aldosterone, cortisone, testosterone, estrogen and progesterone. Together, these hormones are responsible for a wide range of vital biological activities from carbohydrate metabolism to blood pressure control and sexuality. .
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speaking of meds i have been taking an antibiotic and spironolactone does any one have info if these would cause my hair to fall out. my hair is growing back and i quit taking both for the just in case reason.
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Permalink Reply by meg on
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Yup... I was immunosuppressed about 8 years ago to see if my hair would come back... not a good idea if you are around a lot of people... the side effects were worse than the treatment and it did slow-down the progression of hair loss (at the time I was AA). However, once off the medication the hair just went. When thinking about a treatment we all have to consider "benefit vs. risk". The more I live with Au, the easier it seems things are... I have been feeling the advantages as a female of having this condition, and its not so bad.
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Permalink Reply by kastababy on
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This is all good information. Thanks for all your input.
As far as spironolactone is concerned, I took it for about 7 years before finally coming off of it just a couple of months ago. I took it for acne control and and as an anti-androgen (I have PCOS, and my body produces just WAY too much testosterone!!) However, because I am trying to have a baby, I have to stop taking it because it apparently causes birth defects and makes it even harder for me to get pregnant. Please believe me, once I have my baby I will be back on it because I love not having ANY acne at all!!!
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Permalink Reply by Mel on
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Not quite a doctor but being a nurse hopefully I can help with the medical side of things.
From what I understand Immunosuppesents are not given to alopecians becauses of the risk vs benifits balance.
To be immunosuppressed causes many problems (ie you'd spend a lot of time sick ) and while alopecia is a distressing diease our health is not affected by it in the medical sense and therefore its taken into consideration as to whether these risks are worth it to grow our hair back.
steriods do supress the immune system slightly but once again doctors consider the patient when prescribing these for people with alopecia because they have some pretty narsty side affects. When considering using oral steriods, the doctor usually assesses the patients mental status and usually steriods are prescribed for patients who the doctor belives is having a hard time emotionally dealing with their hairloss.
hope this has given some insight
:)
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Permalink Reply by Diane on
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I'm a pharmacist by background. As Mel said, the risk vs benefice does'nt support the use of immunosuppressant to treat alopecia (AA, AT or AU) in 'pure' alopecian patient (no concomittant disease present).
Immunosuppressant drug are used to treat rheumatoid arthritis because 1) some of theses drugs would modify the course/progression of the disease 2) rhumatoid arthritis is an invalidant disaease.... as for psoriasis, if left untreated, the lesion on the skin could lead to systemic infection, among other problems....
Let's put our energy into acceptance!
Diane
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Permalink Reply by Maryann on
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I opted to try the steriod shots in my head...which did not work...and opted to not try the huge amount of oral steriods with low success rate.
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Just diagnosed last week with scarring alopecia. Waiting for biopsies to determine type. My doctor is planning on putting me on immusuppressant medications, it seems. I am meeting with her on Thursday so will know more. I have an inflamatory scarring alopecia that seems to be pretty aggressive.
Anyone one these medications?
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I appreciate everyone's input. I am a nurse also and clearly understand the adverse effects of immunosuppressant drugs. From what I am reading, however, in scarring alopecia, it may be effective in putting the patient into the burnout phase. Does anyone know if this is true or not. I am meeting with my Doctor tomorrow and she is going to write a script for me to start taking this meds. I really don't want to go on them if it is an ineffective treatment for scarring alopecia. Anyone know?
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I try to be as non-judgmental as I can be when I start discussions on AW. Having been here since the beginning, I have tried as hard as I can to let my own acceptance be not only an example, but an inspiration to others.
I have lived with this disorder since I was 4 years old. I have grown up in the midst of shame, intolerance, and downright cruelty from family and friends alike. While I have learned to live with alopecia, I have by no means accepted it, nor will I ever do so. I stopped treatments years ago because 1) they weren't working, and 2) I am not going to spend money I don't have on something that doesn't have a payoff. Now don't get it twisted - if a new treatment came on the market that showed significant success in regrowing hair without me losing it if I stop treatment, then I would jump on it in a New York minute. Until that time, I will save my copayments and insurance and stay out of the doctor's office.
I ask the questions about immunosuppressants because with alopecia being an autoimmune disorder, and more specifically having an overactive immune system, it would stand to reason logically that if you could shut off that part of the immune system that triggers alopecia in all its forms then an immunosuppressant would be the way to go. I'm just surprised that nobody has pursued this avenue of research further.
@Diane: please don't take this the wrong way, but I am sick and tired of being sick and tired of putting all my energy into acceptance. If every dermatologist, immunologist, geneticist, and researcher on the planet combined would put half the effort into finding not only a long-lasting, effective treatment but a cure for this damned disease that we alopecians put into begging and fighting for acceptance, then I wouldn't have to ask the difficult questions. I am DONE with acceptance. I want to research, and I want answers! You can focus all your energy on acceptance if you want to, but I'm done acquiescing to alopecia and society's stance on it.
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