Alopecia World
www.alopeciaworld.com
Has anyone tried distracting this disease with another?
Replies to This Discussion
-
Permalink Reply by Dollhead on
-
Maybe, but it's not going to potentially shorten my lifespan through reckless experimentation. Good luck in your search.
-
-
-
That's an interesting idea, I would definitely be willing to try this out if I had the chance.
Whether it would work or not is an interesting question. I think it depends on multiple factors, such as how efficient those types of cells in your body are at fighting multiple diseases at once, how severe one's alopecia is (patches versus universalis) etc. There are also dangers in that the white blood cells may still prefer to attack hair follicles instead of addressing the new disease, leaving your body open to attack.
Maybe you can discuss this with your dermatologist?
--------------------------------------------------------------------------------
Furthermore, there is actually research going on right now on ways to 'retrain' the immune system by trying to do similarly to what you have suggested. However, instead of distracting white blood cells, scientists are giving controlled doses of a modified version of the protein an immune disorder is targeting in the body to desensitize the cells to that protein and stop the attack.
Currently they are in the early stages of research and are focusing on life-threatening autoimmune diseases like Type 1 Diabetes and Multiple Sclerosis, but the results of their trials have been pretty good so far. Plus if this is tested on and ends up working for alopecia, unlike JAK inhibitors, this will be a permanent alopecia cure with no dangerous drawbacks.
Here are some links if you're interested in finding out more about their research:
-
-
Man thank you so much for your feedback. Thats the information i was looking for. Retraining the immune system, i never even thought of that. Also my dermatologist are not up on alopecia and dont act is if they care. Their response is to go off post to ask someone else. Im in the military, but civilIans only want to charge me just for walk in to talk.
-
-
No worries at all.
Yeah I can relate to what you say about dermatologists, mine have said something similar to me (eg "you just have to accept it, there's not much we can do , etc").
Have they tried any type of treatments on you at all?
-
-
It's been my experience, Saitama, that most dermatologists are clueless when it comes to alopecia. The treatments that I had (steroid shots and oral prednisone) only made the alopecia worse. After they were stopped, I quickly went from alopecia areata to alopecia universalis. To make matters worse, I also developed prednisone-related cataracts and high-eye pressure. Never did my dermatologists mention anything about side effects from prednisone to me. Prior to that, I had always been a very healthy person and had never even heard of prednisone. I did not know it suppresses the immune system. That is why I am wary still of Xjelan (or however you spell it)--too many unknowns at this point.
-
-
I am very sorry to hear about your suffering the horrible side effects of your alopecia treatments. I can't imagine how horrible it must be to lose your good health like that on top of having alopecia universalis.
I am with you on being wary about Xeljanz and other strong immunosuppressants. Anything that compromises your body's ability to defend itself from diseases is a red flag in my book. However there are companies who are running (or planning to run) clinical trials on oral and topical versions of JAK inhibitors for alopecia (such as Aclaris and their ATI-50001/ATI-50002 drugs - they are at the pre-clinical stage currently). Hopefully they can find a way to minimise the side-effects of immunosuppression during the process.
I also agree with you when you say dermatologists are clueless when it comes to alopecia. I would even go as far as applying that to all doctors with regard to autoimmune diseases in general. Alopecia, rheumatoid arthritis, MS and other autoimmune diseases are symptoms of a much larger problem (the immune system malfunctioning) and until we fix that problem we will NEVER be rid of these diseases.
-
-
This is response is late, but ive tried the painful shots for 2 yrs and saw progress in one area and new spots in others. Did the creme and foam. And even acupuncture. I also changed my diet and stared eating lots of fruits and veggies including no inflammatory foods for a year and nothing changed. The last thing i did was drink irish sea moss.
-
Permalink Reply by Niece on
-
such reassuring information. I am waiting for a cure/treatment without side effects. I love good health...I hate no hair! I am hopeful to have both in the years ahead!
-
-
Im right with you.Health is important but its hard to deny hair is almost just as good. Im in the army and have great health. But thats only physical. My emotional health feels like walking on glass. People dont get that. I feel good overall but dont like how i look and when i get depressed i dont feel so healthy. Health is not a one way street for me.
-
-
idc, I should have guessed you were in the military. By that I mean, NO BULLS**T! I appreciate and respect your candor about this horrible condition. Don't worry about getting depressed (as long as it is not really severe). That is the way you are supposed to feel. I am sorry but I cannot agree with people who say "embrace your alopecia." My other pet peeve is people who say, "Well, at least it's not life-threatening." Yes, I know that, and I am not so stupid that I do not appreciate that fact. I, personally, am not willing to go with treatments that compromise my immune system. You would not believe the number of healthcare "experts" who have told me, "20 milligrams a day for two months? No, that is not long enough or strong enough to have side effects such as cataracts and high-eye pressure." They fail to recognize that we are all different and not everyone falls within the average range. Furthermore, from what I have heard, there is only one way to get the type of cataracts that I have (sub-encapsulated posterior), and that is prednisone. Unfortunately, this particular type of cataract tends to be more aggressive than the other types. However, we all have to make our own decisions as to what we are willing to risk and not risk. I only ask that we get all the facts BEFORE making that decision. Best of luck to you and the others here.
-
-
this is essentially how topical immunotherapy works. you rub an irritant onto your scalp so that your immune system will target that instead of your hair. usually its done with chemicals, but anything like poison ivy or nettles would work as long as it irritates the skin. problem is if you ever stop treatment, your immune system will be so built up from constantly fighting a rash that it will basically go ballistic on your hair
- ‹ Previous
- 1
- 2
- 3
- Next ›
© 2024 Created by Alopecia World.
Powered by
