i get extrememly blue fingers and nails when i am cold, my glands seem swollen always and my face get red/hot when i sit down. is that a symptom of lupus too(getting a hot face)? Also, i have numbness in my left leg
I thought it interesting that you are looking at these as possible symptoms of lupus. I was dx back about 1999 and nothing has been the same since. I do get numbness in my HANDS (especially after holding the phone sometimes) and yes I get a hot or burning sensation in my face. I have questioned whether or not I am losing more hair than normal, but my hairdresser, husband and doctor say no, so it must have been just the power of suggestion. I am also post menopausal which has been a complete nightmare for me. From the lupus, I get chest pains and inflammation (costrochondritis), I have developed mitral valve prolapse, various aches and pains, plenty of rashes, mouth and nose sores, and fatigue and most recently headaches. I have seen your posts on the acne board and I have that as well which complicates all of this. ...Are you dx with lupus or are you in the process of researching the possibilities? It took me a long time to convince the drs that there was anything at all going on with me, and its a hard illness to diagnose. I truely hope you don't have this. Not every symptom people have is textbook either as I'm sure the people who visit this board will tell you. I hope you find your answers soon. Ps. aren't you on tazorac?? I just can't seem to find an end to this problem in particular. Nothing works and I am always searching for the next treatment. I was very hopeful about the taz in the beginning, and thought of it as being topical accutane, but now I'm not so sure about it. I started using finacea, (azeleic acid) about 1 week ago, and the jury is still out.
Good luck and please post how you're doing, I visit both boards.
Remember, even if it isn't a "TESTBOOK" symptom, that doesn't mean it isn't lupus.
thank you so much for responding to my post....it is comforting to know people out there actually care. This past year (well, since oct. 2002) has been a real nightmare for me....where shall I begin....
I never had an acne problem but severely oily skin was what i suffered from so my derm. thought it would be great to put me on accutane to help with that. well, she put me on a dose for a 200lb man (i was a 100lb woman). The dose screwed my whole body up, especially my face. My face went from peaches and cream to sunken, pitted, scarred, red, cystic, etc. I haven't gotten through a day without crying. Needless to say I found a new derm who i love and respect more than anything for helping my poor face. But wait there's more. My hair started to fall out (i mean i am pulling chuncks out in the shower) and my hairline is receading rapidly (i think), but my mom and dad say i am crazy and it looks fine...well to me, i am losing my hair and it is now brittle and gross and it used to be beautiful and long and healthy. My eyes started to really bother me and I can't wear my contacts hardly without being inconvenienced by dry eyes and irritation. I have numbness in my leg which is getting worse to the point i can't feel the blow dryer on it (i did a little test to see) and I get hot flashes in my face every time i sit down. I have been to my doctor, my Obgyn, an endocronologist, and my new derm. and they have run tests and say everything is normal (i even had an mri of my pituitary gland and head). The only thing that they have found wrong is that i produce little to no estrogen on my own.( i should mention when i was in high school i was anorexic for a year and i was on HRT for that to keep me regular because my body weight was so low (83lbs. just sick looking). My body never fully kicked in from that but I recovered and have been my healthy weight for some time now with no eating problems (thank god), but I have all these new problems. the endocronologist said that all my levels of everything (thyroid, testesterone, etc) are all normal but my estorogen is the problem. I am on the birth control pill now but next week i stop and have to start having mega doses of estogen through injection (i am not looking forward to that) and i will start spiro and prometrium to balance out. So let's recap, i was beautiful less than a year ago with no problems. Now, i have all these problems with my eyes, skin, nails, hair, (i have psoriasis too) and nothing seems to be working right. my headaches are constant *probably from too much stress and i am so worried about my face and hair (my face is an absolute nightmare, i don't even want to look at it and when i do i cry in tons of tears. I am on tazorac now because my acne got so bad becuase of the accutane and continued when i stopped, but they had to wait becuase my skin is so super sensitive to anything becuase of what it has been through. I don't know if it is working becuase it hasn't done anything but make me look sunburned and chapped (i really just want to give up). I am so depressed (oh, that's another diagnosis that was made) and i don't know what to do. I used to be so bubbly and now i just sit at home all day because going outside for people to see me frightens me (i still live with my parents and i don't know what i would do without them. my dad is my rock and understands that my life is a living hell right now). So, i have gained 15 more lbs while sitting at home these past few months (i don't look horrible, but none of my clothes fit and i mean not a single pair of pants) so i wear sweats basically becuase i am too ashamed to go outside to buy clothes. I am miserable and just come to these boards for help and support...it makes it a little easier i think. I am in an out of doctor's offices and have so many bruises on my arms from blood tests (and i have strange ones on my legs too) I am not an ugly person and feel pretty when I look good (but i am just not feeling good right now) and I cry everyday and just pray that it will all be over soon. I can hopefully get treatments done soon for my face (at the end of the year becuase they have to wait becuase of my sensitivity now) and i just don't know what to do until then. Going to school was a nightmare and i just put my head down as i walked trhough campus, but it is summer now so i have a few months off. (i am in college). Also, i think i have more than just an estrogen deficiancy, why else would i have all these other problems? Maybe it is just stress to the extreme. I don't know. i hope tazorac helps me and the estrogen too and god know what else they plan on medicating me with....
please let me know how you are doing...i would love to coorespond. keep in touch and take care
i hope your life is more uplifting than mine.
Let me start by saying I don't know everything, but I will try to help by telling you my experiences along with what I have found out through research etc...
First of all, when did your hair start falling out? This can be a side effect of accutane. I've remained lucky on that one. I thought mine was thinning a bit, but I realize now it only really comes out when combing or washing my hair. And then it is in strands, not clumps or handfuls. This can also be related to lupus......Are you finding it on your pillows in the morning? Have you tried to cut down on washing your hair ..providing you are now washing every time you take a shower....and have you tried to comb only over the sink or somewhere that you can get a "count" ? I know that having 50 - 100 - 150 hairs fall out per day can be normal....
Regarding the Hot Face/ Hot flashes....Low estrogen will do this. This is what happens in menopause when estrogen levels drop. I am now on Birth control which has helped that tremendously. Can you take birth control? I am on yasmin which provides me the benefits of estrogen as well as a progestin that "blocks" male hormones. Also the spiro you will be taking will also block the male hormones and should help to clear acne and provide a solution to some of the hair loss.
As far as the tazorac, I have used for 5 - 10 minutes prior to washing face every night since March 11 and I have still broken out. I like the fact that it dries out my skin but it almost certainly over dries it if I try to leave it on longer. It is topical accutane and I am surprised that if you couldn't tolerate the accutane that they would have put you on this, but maybe it was just the oral form that you didn't do well with. What is your skin care regemine?? Here is mine for what its worth.
AM wash face with water only and apply jojoba oil for the white flakiness. This does seem to keep the flakiness at bay and without it I think my skin would be sooo dry that I would breakout from just that!!
PM apply tazorac for approx 5 minutes or so, wash face with MD Forte glycolic cleanser I, apply jojoba oil, and before bed I now apply FINACEA (15% azeleic acid gel). My skin gets dry so I don't apply the finacea every single night. It has helped to dry things out and flatten some things I guess , but the Jury's still out on this product. I am afraid to get my hopes up.
I also take accutane 40 mg 2 times per week
I was taking spiro since last September, but stopped last week. It was just too drying along with everything else and after 9 months, I should have been mostly clear from it. (I took it 10 years ago 1992 - 1997 at 125 mg and had beautiful clear skin, but this time it just didn't help)
Anyway, that is it. I have had a long road and wish this would all end. I have cried a lot too.. It just seems like someone should be able to clear this. I am meeting a new derm today and am nervous. I am sure when He hears about taking accutane twice a week he will freak, but it also helps with the lupus rashes. He apparently also treats lupus patients. I hope it is a good experience.
I don't know when you are starting the estrogen and spiro, but hopefully these alone will help. If your estrogen is low then it stands to reason that your testosterone would be the "dominating hormone" right now....even though it may not show high levels. Hopefully the extra estrogen will help along with blocking some of the male hormone with the spiro. If you research hair loss, spiro is mentioned a lot as a treatment. Also research Hormones and acne/hair loss. A lack of estrogen can do many things to a womans body. Maybe this is your whole problem?
I am also depressed and want a solution to all of this. We have to keep fighting.....because not everything is textbook. No ones symptoms are the same for anything. My sister in law had a hysterectomy 3 years ago and she looks and feels wonderful...Not me...It has been a 5 year nightmare.
I read on one of these boards that someone was taking a pill similar to yasmin birth control and when she added spiro, she broke out terribly....when she stopped the spiro she began to clear. I am wondering if the spiro reacted negatively with my yasmin? I am hoping I made the right decision to stop taking it. I contemplate everything these days!!!
Please let me know your regimine and how you are doing. I visit here and the acne board.
today is just another lonely day for me....
here is my regime as of now. I wash with neutrogena fresh foaming cleanser morning/night and put tazorac cream on all night and put clindagel and neostrata oil free lotion/spf15 on in the morning. I am dry and flaky yet i am sooooooo oily during the day i blot every 10minutes (no joke). At night I am not oily and wakeup with just the shine from the cream. I don't get that at all. How come I am so oily during the day but when i sleep i don't get oily? Also, my hair falls out in clumps in the shower, i am not talking about strands (100) i am talking clumps (500). Who knows what is wrong with me. I hope the spiro doesn't dry things out too much and i hope it works to get me balanced. I am a wreck and just want my life in order. i can't even put makeup on because i will just flake and cake and then be oily 5 minutes after applying..there is no hope for me. My forehead was the only clear part (through all of this) and now it is all bumpy and red too. I don't know if it is the Birth contol pills or what that caused this. But I do know that the birth control pills were supposed to make me start my period today, but obviously they aren't doing there job for me. I don't know what to think anymore other than i don't think i will ever be happy. I am glad you found a man that cares so much about you and loves you no matter what. i fear that no one could ever love a face that looks like mine and i will be alone and miserable for the rest of my life. I am scared.
good luck with the new derm. let me know how it goes!!!,
What are you doing to prevent dry skin?
Have you ever tried taking Dry Vitamin E and Dry vitamin A supplements?My skin is super sensitive to everything and the Dry Vitamin E and Dry vitamin A
has really helped my skin a lot.I use Aloevera from geltabs and apply it all over my body while wet which helps too.The A&E vitamins might also help your hair too.
i can't overdose on vitamin a becuase of what the accutane did to me....read up a few posts (not just the last one, but my whole story)....the accutane really messed my up and caused my hair loss i think, and my stress level isn't low at all.....i am starting the hormones to get me balanced at the end of this week and just started another new perscription from my derm. (clinac BPO)..that hopefully will help with the oiliness some and i use neostrata oil free lotion spf 15 during the day for dryness (but i don't know how effective it is because it is like liquid sunscreen, really thin)..thank you for your concern, but i can't do the vitamin a thing. I used to take a multi vitamin (actually 2 flinstones children's chewables) but i had to stop when i started the accutane becuase of the vitamin a and I never started taking them again. i did try to take two once again, but got 2 horrible cysts the next day and somehow thought that they were related (i don't really know though, could just be a coincidence). I have had numerous blood tests, mri's, and doctor's appt. to try to pin point what is wrong with me and they concluded that i have 11 points of estrogen when i should have 115 points (i don't get the scale, but that is what they told me) so i start spiro and estrogen shots on friday as well as the rest of my meds from the derm....i just don't want to cry anymore
The Spironolactone should stop the hair loss.What about Dry Vitamin E ?I don't see any reason why you shouldn't be able to take that.That would help to keep your skin from drying out too much while on the Spiro.