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M,
I wish there was something that I could do for you. I feel so bad that you had to go through that visit. Honestly, remember I kept saying that I was breaking out more and more on the azelex and that they were constantly inflamed feeling? Well, maybe the azelex isn't for us. I'm seriously considering tazorac again or maybe even differin except maybe to leave it on overnight every other night or something. The theory of what azeleic acid can do is something I wanted to believe would help me. I know you did too. But I am wondering if my acne or whatever this is has not as much to do with bacteria as it does ( for me ) with my immune system. I have researched and found someone else with lupus that uses Elidel cream and would like to at least try it. If it doesn't help, I'll hush up about it, but I feel like this is something I have to try. To go to bed with nothing at all in one entire area and wake up with 5 - 10 tiny oil filled inflamed pimples is crazy. They have to be coming from somewhere. I know he has told me over and over that this needs to be treated like acne, but after all this time, I realize that nothing has touched it. Its like my body is smarter than the meds even. And I know accutane is what brought you to this place, and yet its all that keeps me from developing painful fluid filled cysts and stuff. I want off of it so bad, M. But I just can't stand the lupus rashes. They hurt so much.
This all feels overwhelming and I'm sure you're ready to deck that dermatologist for saying he wants to turn you into an experiment. I already feel like one myself. I consider myself well educated and able to research things and think on my own so I am no longer going to give my derm the right to assume I'm a guinea pig like he's done for 5 years now. Sometimes I don't think this will ever go away. I know exactly how you feel and I know your pain. You can always come here to vent if you need to. If the azelex doesn't work for you along with adjusting some diet things maybe and checking into (on your own) a little more about the hormone therapy they have you on, then YOU just have to keep looking with OUR help. I've never seen your face, but just know you have to be a beautiful person. I know right now those are hard words to hear, but the sun will shine again for you and you'll get this straightened out and get on with your life. For now, don't worry about the scars and what to do about them. Focus on the hormone issues and getting the acne a bit under control.
By the way M, how long were you on accutane? Is is at all possible that they stopped you TOO soon before the accutane could do its job for You? I realize this is a very sensistive subject for you. I wish I could give you a hug and tell you everything will be ok. Are you still going to use the azelex for now? Maybe the spiro will still kick in for you, but maybe you should check into hormones and acne , and estrogen DOMINANCE and what it all means. Truthfully, it sounds more to me like your acne is continuing as a result of the hormone problems. I'm not sure about bacteria really. Of course, I also don't want to give out advice that I can't support.
And M, we all go into the NEXT cream, or gel or antibiotic with the same high hopes. We all hear how it's worked for so many and have high expectations as a result. I took minocycline for 3 months and just got worse....others have cleared. I took spiro for 5 years and stayed completely clear, and now it won't do anything for it. I've tried, differin, tazorac, avita, triaz, klaron (I think), erythromycin, akne-mycin, accutane, claritin, valtrex, and a host of other things.......none have cleared me. I'm still here fighting the same battle. I have scars and red marks. I get painful pimples and my skin appears pitted. I try moisturizers and they break me out, The creams that are SUPPOSED to be moisturizing only DRY me out.....I feel like a lost cause. My choice has been and will remain......fight or give up . As much as I say that I should just give up, I know I have to keep searching for the answers. I guess your answer and mine won't ever be the same maybe, but we can help each other through the trial and error until we find it. I know how hard it is . I woke up one morning with this problem too. I have been told at every single appointment that this is the one that will do it....this will control it once and for all. And I'm still here searching with everyone else.

When I was getting sick with lupus and before I was diagnosed , I had drs literally (honestly) tell me that there was nothing wrong and nothing they could do. I was told by one dr that I should just go back to church and pray because there was nothing wrong with me. I've left the dr office crying soooo many times, I can't even remember, BUT I was persistant and researched things ON MY OWN and eventually was diagnosed with Lupus. Not the best thing to hear, but at least I had a name and could further research and begin my fight against it. That was 5 years ago. It's changed my entire life and yet all I can think of now is my poor face. I know though, If I don't try to FIX it, no one else will.
You need to get your fighting gloves on and spend the time researching everything you can and then YOU tell them what you want to try (within reason of course and not to interact with something else). Anyway, this is your fight, not the drs. Do you think those drs that told me I was a lost cause and there was nothing wrong with me cared one bit if I was having chest pains and couldn't sleep?? It was my pain and my fight. I'm now trying hard to do the same with this. I have felt this year like I'm losing the battle, but will keep coming here and researching and asking questions and maybe someday I will get this under control and without the accutane.

I know this has been a long post......and they are probably right about us getting email!! LOL.....but I'm here for you and you are in my thoughts and prayers. Do what you need to do for YOU.

L
thanks all

tigger:
what the derm. meant by normal, was what i looked like 6 months ago. i showed him a picture of me at halloween when i was fine and no acne, and i showed him a picture of me in december (1 month on accutane with no problem yet) and normal to me is nice skin, not perfect, but pretty even toned, and i had one pock mark which i liked, it gave me character, it is to the left of my left eye. it was my character flaw and i embraced that sucker. now i struggle to find a spot on my face that doesn't have a pock mark or keloid or huge pores, etc. i couldn't see my pores before this, well maybe the ones on my nose, but now my right cheek looks like an orange, it is so pitted with large pores. the accutane caused problems in january (the whole month) and it was so bizarre that it just happened over night. i had no acne, no cysts, no blackheads at this time, just oily skin, and my dose just messed my face up so bad. so normal is just my skin, the skin i see in all my pictures, all the photos in the house, my drivers license, my school id, etc. no it's not perfect but i didn't hesitate to smile at myself (especially with makeup on lol)


Laur,
i know you have been struggling too, and i know i could be a lot worse off than i am. i feel your pain about your lupus and your rashes and wish there was something i could do or say to make it better. the elidale is a good product and i think you might like it. although it is a little tacky it did help my face when i used it (although for a short period of time). have you thought about psoriasis creams as well??? what about Lactonal-E. i love that cream. it is a perscription and i put it on my scaly fingers when my psoriasis flares and it is so moisturizing and fixes the problem. trust me, it is not a moisturizer that will dry you out. maybe ask the derm. about it??? my psoriasis sucks and i have had it since i was 12 and it started on 1 finger then spread to all of them, then my knees, my ears, chest, etc. and i tried every cream and steroid and it wasn't until i gave up and did nothing that it got better (go figure). i still have it all over but now only my fingers are chronically dry (you would never know by looking at them though). i just use the lactonel-e and sometimes the tazorac gel on them and it gets better. have you tried calamine for your rashes or a soothing oatmeal bath/milk bath?? i don't know if those would help because i really am unfamiliar with the rashes and lupus, but i thought i would give it a shot with some suggestions. as for me and my face, i know some of my acne is still hormonal and that is not taken care of yet. and i know some of it is bacterial because i have clogged pores and if i look at them one day they are white, the next day they are very much inflamed and ready to leave their mark. so, i have both and i am sure my stress doesn't help. i am so greatful that you are here and i can talk to you as well as all the others and get support. i have been doing so much research (why i posted in the lupus board when we first met) and a lot of my symptoms (hair, numb leg, etc) have to do with the thyroid too (and it is abnormally shaped) but everything just keeps checking out ok. my ovaries are ok, i just can't figure it out. i had more blood drawn on monday to check my lipids, ldl and hdl, and cholesterol and all that was ok too. so i am stumped. i don't know what i am using that is irritating my skin. the neostrata is very creamy and gentle (doesn't sting) the azelex kind of tigles for 5 minutes (only in certain areas) then i am fine and i use it twice a day and my scaly skin has decreased to almost null. The lotion i have used since day 1 of accutane and it hasn't caused me problems. so, i will keep searching and i hope this facial doesn't screw me up too much. i know what to expect because i have had many of them, but my skin is so different i am afraid that it will be harsh (because extractions always hurt before) and then there is the microderm. i don't know about that. everyone here seems to agree that it is a waste of money. i am supposed to get a series of treatments, so who knows???? my dad called and i told him what the derm. said and he is going to call and schedule an appointment with him so he and my mom can talk to the derm. and really see what's going on (because my words are just tears right now). also, my mom is going to see the endo. to help me out there too. i love my parents for caring, but i don't want them to be too pushy and my dad has already proven that he can be. but he said he is always here for me!! i wish i coul just sit down for a cup of tea or something with you and just have both of us spill our guts out and cry and hug and then feel a little better because we know we are not alone! but i know that isn't possible, and the computer is what we have. my derm. says he knows that my frustration and anger is valid, as my problem was so sudden, but he says that time is what i need. i am 20 years old and haven't been happy with my life since i was 16. anorexia, depression, now this. happy 21st to me huh? alright, well i need to stop venting now and go eat some ice cream (lol). i know i think i should work on the diet, especially since i don't exercise right now because i don't leave my house. i just feel like a fat pig, though my parents tell me i;m not. i am 5 pounds overweight probably, but better than 30lbs underweight!!! ok, i am here for you L. and anything you need. please just vent and i will give you all the attention i can because i know your pain as you know mine and don't ever forget that you are in my prayers :)
-M





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