Skin advice needed. : Hi all, I need some help... - LUPUS UK

LUPUS UK

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Skin advice needed.

betsey1987 profile image
5 Replies

Hi all,

I need some help/answers. 

I've known about my lupus for a few years now and have the fatigue and other symptoms which are more or less under control. But my main issue is my skin. I have terrible cysts on my face. This started a few years back. I have since used several types of antibiotics to try clear this up .This works for a while then I get the spots back. There hard lumps that burn and itch and just stay there for weeks. Its left me with bad scars. I've altered my diet , my skin routine, medication to no avail. I also went to a skin specialist who told me " after having your first child this will clear up" , great not only do I not want kids, I can't have kids due to the lupus!!! 

Help, does anyone have problems with this?? I've reached a dead end and not sure what to do l! 

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betsey1987
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5 Replies
BonnieSue profile image
BonnieSue

If having a child helps this problem, I would guess that the dramatic hormone changes in your body are responsible. Maybe a consult with a gynecologist would be helpful regarding trying a hormone therapy for you. You may not be comfortable through some of the hormone changes, so it would be a matter of how much you want to get rid of these cysts. You would also need a GYN willing to be creative and imitate the changes in you that a pregnancy would cause, as long as it's a safe thing to do. It would certainly be for a very good reason. These cysts must be a real trial for you. I'm hoping there's a compassionate Dr. out there for you.

betsey1987 profile image
betsey1987 in reply to BonnieSue

Hi, I have tried changing my pill as recommended by the gp as they thought it was hormonal. Unfortunately this made things much worse and the cysts spread. Also my emotions where out of control. 

Like I say, really feel like I have hit a brick wall. 

BonnieSue profile image
BonnieSue in reply to betsey1987

So by changing your pill it was proved that the cysts ARE indeed caused by hormonal influence because the cysts did respond even though they became worse! This is progress! The pill chosen just wasn't the right one. It seems you need someone very knowledgeable to prescribe the right pill or pills to get the right outcome which would be to reduce the cysts. This could be very complicated and you may not want to go through this search. Then again, your problem is a serious one and it just may be worth looking into finding a Dr. who specializes in this area of practice---maybe at a local university or even one a few hours away.

There may be a topical cream or ointment with hormones or other ingredients that will work for you rather than a pill. Again you need the right physician practicing in this area of medicine. I go to a GYN who specializes in problems so I know they are out there. But I would stick to one attached to a university for your particular needs. I wish you all the best in your search for good answers to this problem. I'll keep you in my thoughts and prayers.

Footygirl profile image
Footygirl

Hi Betsey 1987

Sorry to hear about your trials. I am having face skin problem myself, to a lesser degree, and am hoping that seeing a really good specialist in Lupus will solve the problem for me. I see him in May. If he can give me some advice, I shall pass it on. I expect it has something to do with this thing we are saddled with; yet another symptom. 

These so called doctors who are locked in the 18th century make me fume. I was reading an article about DES and a doctor reported that a premature birth was caused by "an excess of shopping" not DES.This was decades ago but it is sickening how attitudes can stick.

Anyway. I am sure you will get lots of information here and support. We all have our low moments. Hang in there sweetie. I hope you find an answer soon.

OXOX

⚽️

betsey1987 profile image
betsey1987 in reply to Footygirl

Hi, thanks for your reply. Any information you receive I'd love to hear. The attitude of women have kids was very disappointing to hear and very old fashioned, I wasn't even asked if I wanted them! 

Have you ever heard of accumax? 

X

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