Protopic

Hi

Hi know when I started treatment with Diprosone OV ointment it made the itching worse but after using it at the start viscously for first week the stinging, itchiness disappeared.  Usually treatment at commencement causes discomfort but it soon settles and goes.

the thing to remember is there steroids and they need to be used with caution eg thinly and in the area where the LS is.   Your treating doctor should show you with a mirror where to apply it and how often.  If his just someone that says use it down there, see someone else.

have a look at lichen sclerosis yahoo group, biggest LS group online of sufferers and the majority use Clob.

What they don't tell you with treatments such as Clob and others is that they can thin the skin when used excessively or for too long and then usually you have to use another ointment to help thicken the skin up again. The positives with Clob is that it's very effective with LS sending it into remission.

persevere if you can it will pass things will get better, get regularly checked. If you get alot of redness use it thinly, if your still concerned go back and report, they will give you something else to try. 

Good luck.

I have just been put on Dermovate (same as clob) and have found it brns like mad when I first apply it then I itch for a while. I have been using it every night for about two weeks but so far no improvement.  Have to reduce to twice a week at the end of the month then go back to the dermatologist .  Hope it's not making things worse .

Hi Bennetta,

I use Protopic and agree that when you first use it, there will be burning/increased itching.  The first time I used it my reaction was something like "Holy Hell!"  I literally wiped/washed it off after applying it for the first time, because it was not a fun experience.  However, I perservered and after the first few days to a week, there was no such negative reaction when applying it.  Even more importantly, Protopic has worked wonders for me.  

With this above said, let me add this:  All people react differently to medications. While most people only experience burning or increased itching when FIRST using Protopic, I'm sure there are also people out there who are allergic - which is a far different situation.  YOU know your body best, so go with your instincts and call your doctor's office for advice if needed.

I don't use Clobetasol at all anymore.  I never had much success with it - it would manage things for a while, and then a few days later I'd get some horrible flare-up. It was something my OB/GYN had prescribed, but when it stopped working and I was still struggling, I realized she might not be the right type of doctor to be seeing for the problem.  I then went to my dermatologist who said, "Get off the Clobetasol; use Protopic every day if you can."  The dermatologist was very worried about the Clobetasol thinning the skin, as Sarah mentioned in her post. Thinning skin is only going to compound the problem with LS.  Yes, I understand LS thickens the skin... but it also becomes very thin and britle in places, thus the problem with fissures and tears.  However, until very recently it was difficult for me to use Protopic every day because it was very expensive for me:  between $450 and $500 for a 60g tube.  I live in the US, and it is only now within the past few months that the drug has gone generic (Tacrolimus), and I can finally afford it.  I'm very thankful for this.

Protopic is a topical form of Tacrolimus, an immunosuppresant that is also used in patients following organ transplants.  As long as I apply Protopic/Tacrolimus every night, I have no symptoms left.  My skin is back to normal; no white patches.  There is no itching or pain.  My sex life is back to normal as well.  I couldn't be happier, and I can't imagine how miserable I'd be if I hadn't gone to a dermatologist and discovered the Protopic/Tacrolimus.

I'm excited to read your post this morning, because it's one of the few times I've seen someone on this forum bring up the subject of Protopic/Tacrolimus, other than myself.  Thank you.  Over the past year I've received the impression people are uninterested in, or even resistant to, the idea of using Protopic.  I seem to read the same postings repeatedly, which only discuss Clobetasol and natural methods... and there is usually no response to suggestions of trying Protpopic/Tacrolimus; a few have even replied by arguing against the idea of trying it (even if they've not tried it themselves).  Yet the majority of postings also don't give me the impression that Clobetasol/natural methods are working that well for people.  It confuses me, because in my case I was willing to try ANYTHING to stop the misery, and stop the progression of the disease.  I want to thak you and Sarah for being on this forum; I don't feel so alone anymore.

Also I must say that Sarah is absolutely right:  Many doctors don't seem to know how to treat LS.  They don't consider other medications; they only seem to throw Clobetasol at the problem rather than researching other options, even though when used incorrectly, Clobetasol can in fact compound the problem and make it worse. Many doctors also don't seem to give proper instructions to patients on how to apply medications, or how frequently to use it.  The only way to find relief from LS, is to first find a physician who understands the disease.  It's not fun to do that - it requires repeated visits to more than one doctor, until you find a good one.  The saddest part of all, is that the prevailing ignorance of the medical community regarding LS and how to treat it, seems to have resulted in people suffering more than they should have to.  This is a fairly common disease! Doctors should know better how to treat it.

I wish you luck with the Protopic.  Give it a bit of a chance - stay in touch with your doctor if you have too many difficulties.  If you can get past the initial adjustment phase, the burning/itching will stop.  I believe it will help you.

Take care,

Denise

This is a good discussion to have here. I've just read the info on Tacrolimus again. If anyone wants more details, they're right on this site:

https://patient.info/medicine/tacrolimus-ointment-protopic

Positive note actually, that your doctor is weary of putting you on glob too long.  Thanks for the info on Protopic/Tacrolimus.  Another insight gained.

So I found out I'm not supposed to use protopic due to an allergy so they put me on elidel, anyone heard of this one?