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thanks
hi im zoe by the way sorry traceys daughter
thanks for the private chat clare
as you asked my mum take steroids, Plaquenil,and antidepressants also bupamorphine patches for the pain the pain killers are used because she cant take anti-inflammitories due to an allergy to them plus repeat stomach ulcers

her skin is deppressing her the most she doent go out anymore further than the dr or the local hospital
can any one suggest anything else she can do for her skin etc meds creams anything
thanks
 

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elisabethm
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zoe

high zoe sorry to here your mum is not to good i got a new cream from the doctor as my tummy neck i was itching allthe time it is Betnovate RD Cream i have had betnovate before but this one is a lot better hope your mum feels better soon what a good daughter you are for being so concerend best wishes to you and your mum elisabeth
 

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Zoe, does your Mum know that the Red Cross offer a camouflage make up service. They could help your Mum find produts to conceal her problems, the Doctor then prescribes these.
It is on offer here as far as I know. May be worth following up, they may call at the house if Mum really cannot face going to them.

x Lola
 

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Hello Zoe

Treatment of lupus skin problems is basically with the same drugs as lupus. I am wondering if your mum's lupus is adequately medicated - she's only on one disease modifying drug, Plaquenil. There are several more and most people on this board take more than one. It is possible that if her systemic disease were better controled the skin would improve too.

People have differing needs of course and differing responses to medicines. Sometimes the medical focus is on treating a serious organ problem and the skin gets neglected. Or skin disease starts as a new symptom. It is very often a question of finding what works for that particular person.
If Plaquenil isn't enough for the skin then another anti malarial called Mepacrine can be added. The Plaquenil can also be changed for a slightly more powerful form of Plaquenil called Aralen ( chloroquine). If an anti malarial combination isn't enough then a disease modifying drug like azathioprine ( Imuran) could be added. I have read that the other one in this group called Methotrexate is sometimes used for skin but the Imuran seems far more commonly used.
There seems to be some evidence that a medicine called MMF or Cellcept can be useful for skin that hasn't responded enough to other treatments. It is also used for treating SLE if necessary especially for organ involvement.
There are a couple of less well known drugs that are occasionally used. I think the use is unusual for several reasons. First, it mostly isn't necessary because the vast majority respond well to the more usual meds, second because they have a big risk of severe side effects. The drugs I am thinking of aren't used much in systemic lupus either Obviously doctors prefer to use drugs that have more benefit and less risk. Most doctors wouldn't propose a drug with potentially very serious side effects when inner organs aren't involved and especially if there is very little evidence that it will help. I suspect many patients wouldn't want to take them either. One of the problems with the forum is that we often hear of people trying such and such, but we don't always hear if it has helped and what side effects they had.

There are powerful drugs that are used for lupus skin but not in systemic lupus. The decision to use them depends on what sort of lupus skin problem the patient has. There are three basic sorts : the type most often associated with systemic disease, called the butterfly or malar rash; the type commonly called discoid which can scar and a less common sort called subacute cutaneous. People with systemic disease can have any of these sorts and more than one sort and a few unfortunates even suffer from all three. The point is that some sorts respond better to certain medications than others. It takes an experienced dermatologist to determine what's worth trying in any particular case.
There are few lupus specialist dermatologists in the UK - about 7 I believe but obviously the best bet is to get a dermatologist who will work with the rheumatologists in a specialist lupus centre.

The sorts of drugs I know of that might be considered depending on the case and their evaluation are: Dapsone which is mainly for blistering types;oral gold sometimes used for rheumatoid arthritis and Thalidomide which has no use in systemic lupus. I don't know if it is useful for the malar type rash but it is used for discoid and subacute. It can be very effective but also can have side effects that are clinically unacceptable such as peripheral neuropathy, that is numbing of feet and hands and can have several troubling side effects that some people can't put up with.
Accutane is sometimes used too. I have only read of one instance where a woman with well controled SLE was trying Thalidomide for her continuing skin problems and I never heard if it helped or not. There is a psoriasis drug that's showing promising results in studies for the discoid type but hasn't got established use yet. There may well be others and other combinations that I don't know about.
As far as camouflage make up goes, people in the UK need to call the Red Cross branch in their locality ( phone book ) to see what is locally available. St Thomas Red Cross clinic isn't operating unless they've started again very recently.
There are a number of recommendations in posts on the Looking Good and Feeling Better section of the forum Bare Escentials ( sp?) and 'mineral' makeup (?) is often mentioned. I'll trawl through them later. I couldn't use the specialist make up because my skin was too fragile and sore to be able to get it off. I use Revlon Colorstay foundation which is available in a limited colour range in the UK, using soap and water to get it off. Luckily they do keep a range suitable for fair skinned people.

The topical creams can't be used long term because they damage the skin and sometimes make it worse overall.
Your mum is almost certainly photosensitive. If she isn't aware of the need for protection there are several precautions to be taken. UV exposure can worsen systemic disease even if the skin is not obviously affected.
Maybe your mum doesn't know that sunblocks are available on prescription. I am using an Australian one, SunSense which is very good to wear. I have also liked Neutrogena. A UK/European brand should have the four, or is it five, star rating which indicates UVA protection as well as UVB.
I do hope that she wil be able to summon up the strength to continue her search for treatment. It might take very little to vastly improve her situation
I should have thought Southampton is the most convenient place with a chance of accessing the sort of expertise she needs. I do know how she feels. I had given up all hope of any improvement after 26 years, then I had a great stroke of luck, a forum contact. It can take a lot of determination and encouragement. This forum contact really had to push me because I couldn't bear the thought of exposing myself to doctors again ( I had a dreadful experience once too ) and daring to hope only to have them dashed once more. She pointed out that I should be strengthened by my bad experience - nothing worse than that could happen- and basically, never give up, while there's life there's hope sort of attitude.

Please give her my very best wishes.
Clare
 
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