Pro Topic Cream - an alternative to Steroid Cream

Hiya, Can i ask is that the actual name of the cream if i ask my dermatologist about it , or is it a particular branded name ? I'm only about half an hour away from Chester (Welsh side) , so it's nice to hear of something different , having positive results so local to me. I can tell my consultant that , as i'm always wary of mentioning something being used in The States (or elsewhere) that you read about on line. Are you still using the steroid cream or just the protopic? This feels like exciting info to me. It's been a vicious circle (for me personally) of trying all the different alternative creams and washes etc , mentioned on the various forums, to see if they help , but to hear of a prescribed cream that seems to be helping you is good news. I haven't posted for a while as i've been feeling a bit despondant (think that might be spelt wrong) about it all. Netty

Have been diagnosed in last three months. Have read everything about LS I can find - mostly online. It is great to have a forum like this as this is a scary disease and have to thank all your ladies who have made suggestions about living with LS. Used steriod cream initially - it took about 2 weeks to notice any improvement after which I stopped using it as it was affecting my sleep pattern. Got emu oil from and Australian company online - oil as well as capsules. Take 2 capsules 3 times a day with food for 6 wks and 1 x 3 after that. I apply the oil liberally 3-4 times a day; put on fresh cotton panties each time I use the oil (wear no panties at home) and only use steroid cream for 2-3 days when very sore - sea salt in bidet or bath helps when sore too. Have tried Bepanthen cream but found it difficult to apply as it is a very thick cream - has Paladen cream the same consistency?

Hi, i haven't used Bepanthen though have heard it's effective but do use Paladin and can confirm that it is a thick consistency of cream but then it's a barrier cream so it goes with the territory. It works for me so i don't care about the consistency! I thoroughly recommend it. Take care x

Hi its D here.I too have'nt been on for a while and like lida I am over the moon with the paldin cream I know its a bit thick but it does work just make sure you rub it in well but obviously gently I just cant believe may results and niether can my gynaecologist I havent used the dreaded dermovate betnovate or eumovate for months and months and it has gone completely from my vulva.So hopefully if you persevere with it you may have good results too.Please try to keep positive Love Dee :D

please read up on protopic cream well before usage.. I looked because of word of mouth on a couple of occasions and the findings put me off.. it may not be that everyone is the same but please read all the findings. thank you

Hi, I am concerned about the use of Protopic. It's other name is Tacrolimus and is a drug which affects the immune response. It is recommended for moderate to severe eczema, when steroids haven't worked or to reduce the amount of steroid cream used. The British National Formulary, (the prescribers bible) says long term safety has not been evaluated and should be avoided, but it can be useful short term. Should only be started and be monitored by gp or consultant experienced in topical drugs for excema. It is a prescription only medicine.Cautions are pregnancy, UV light, and alcohl (risk of facial flushing and skin irritation!)There are known contraindications and side effects are application site reactions, pain and numbness. For more info if you go to www.drugs.com you can read info and judge for yourself. However I spoke to a colleague who is a urologist (unfortunatley the LS has affected my urinary tract too), who suggested this might be a good option if steroids had failed to halt disease. BUT with proper supervision. This is a highly potent drug and not a barrier cream which can be used freely. Now I have had an ulcerated area biopsied and the stitches removed, ouch!! I am going to try aloe vera. If that doesn't work I guess its Tacrolimus, but only under the careful eye of my consultant. I know this is long-winded but I'm worried people might think its an innocent cream, and we are all vulnerable when Ls=S is mentioned!!

The name of the cream is Pro Topic Cream and I'm still getting good results from it. I've recently been to see my consultant and she's really pleased with the results, saying she's never seen my skin look so good. I only use it about once a week now and only revert to the steroid cream when I'm really itchy. My consultant is keeping a close eye on me and continues to see me every 6 months for check ups.

Hi,

Ive had eczema since i was 4 and im 26 now and ive bin suffering with really bad red patches on my eyelids and top lip which were beginning to scar and get really sore, and i was told no to put steriod cream on my face so they put me on protopic ointment. I had the same side effect with this, it was really warm sensation but now has died off, and within a month and probably not even quarter of the tube my sores and redness have gone and if i start to get the itchyness i put some on which prevents any flare ups and dont have to worry about the thinning of skin as it isnt a steroid cream :D win win all round :D

This was a dormant thread, but now that it's popped up again, I've looked up this Pro Topic, which is tacrolimus. It's not meant for LS and not meant to be used long-term, which LS sufferers need. It's for eczema short-term and it raises one's chances of getting cancer by a small percentage.

"Tacrolimus is in a class of medications called topical calcineurin inhibitors. It works by stopping the immune system from producing substances that may cause eczema."

"TCIs are chemically unrelated to steroidal treatments now in use, and are the first steroid-free treatment for eczema in forty years."

I'm pasting in from the MedLine Plus page on tacrolimus:

"A small number of patients who used tacrolimus ointment or another similar medication developed skin cancer or lymphoma (cancer in a part of the immune system). There is not enough information available to tell whether tacrolimus ointment caused these patients to develop cancer. Studies of transplant patients and laboratory animals and an understanding of the way tacrolimus works suggest that there is a possibility that people who use tacrolimus ointment have a greater risk of developing cancer. More study is needed to understand this risk.

Follow these directions carefully to decrease the possible risk that you will develop cancer during your treatment with tacrolimus ointment:

Use tacrolimus ointment only when you have symptoms of eczema. Stop using tacrolimus ointment when your symptoms go away or when your doctor tells you that you should stop. Do not use tacrolimus ointment continuously for a long time.

Call your doctor if you have used tacrolimus ointment for 6 weeks and your eczema symptoms have not improved, or if your symptoms get worse at any time during your treatment. A different medication may be needed.

Call your doctor if your eczema symptoms come back after your treatment with tacrolimus ointment.

Apply tacrolimus ointment only to skin that is affected by eczema. Use the smallest amount of ointment that is needed to control your symptoms.

Do not use tacrolimus ointment to treat eczema in children who are younger than 2 years old. Do not use tacrolimus ointment 0.1% to treat eczema in children who are between 2 and 15 years old. Only tacrolimus ointment 0.03% may be used to treat children in this age group.

Tell your doctor if you have or have ever had cancer, especially skin cancer, or any condition that affects your immune system. Ask your doctor if you are not sure if a condition that you have has affected your immune system. Tacrolimus may not be right for you.

Protect your skin from real and artificial sunlight during your treatment with tacrolimus ointment. Do not use sun lamps or tanning beds, and do not undergo ultraviolet light therapy. Stay out of the sunlight as much as possible during your treatment, even when the medication is not on your skin. If you need to be outside in the sun, wear loose fitting clothing to protect the treated skin, and ask your doctor about other ways to protect your skin from the sun."

Thank you for your post!!!! Yes I agree 100% with you! protopic has worked wonders for me and today I forget I have LS!!! I feel that more women need to be aware of this mediction to consult their dermatologist and see if this is a good option fo them. It seems tha OBG don't always know about Protopic. Clobatesol is a heavy steroid cream and can have somesde effects like thinning of the skin which made things worse for me.

Caoline

Caroline