The dermatologist today switched me to cobestol in the morning and a protpic at night. I just applied it maybe 30 minutes ago and it has made the itching so much worse. The derm said there would be some getting used to it, how long is this supposed to last? Has anyone else had this course of treatment and did it work? The clobestol was working, she was just weary of putting me on it for a long period of time.
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:
Hi! So last night I freaked out after applying then researching because it says to use caution/don't use if you are allergic to a certain medication i'm allergic to. I will be calling my doctor but i'm hoping its fine to use. It seemed like a good solution so I wasn't having to use clob all the time.
My husband is in the military so unfortunatley i'm limited to military doctors. I had a couple telling me they were "googling" the condition and ultimatley telling me they couldn't help me. This is when I was sent to the dermatologist. She didn't seem very confident but I felt she knew the most out of the people i'd dealt with so far. The goal is to get off clob eventually and just use protopic until I hopefully don't need anything anymore.
I also see your name is MidwestGirl, I grew up in the midwest 
(WI) My parents are getting quite the winter there right now 
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.
Hey Bennetta!
Hilarious that you're a Cheesehead, LOL!!!! Unfortunately I'm the girl next door surrounded by purple... but actually, my son is a big Rodgers fan. Anyway I'm just teasing... it's nice to see another midwest girl on here!
I think reaching out to your dermatologist to ask about potential allergic reaction is definitely the right move, if you're allergic to a medication affiliated with Tacrolimus. I'll cross my fingers and hope you'll be able to use it; you said the dermatologist didn't seem that familiar with LS either... but the fact she knew enough to have you try the Protopic is promising (as long as it doesn't conflict with your allergies). GOOD LUCK!!!!
As for the winter here... oy vey, it's terrible! They've actually canceled several school districts today due to severe windchills! Hopefully you're now in a warmer climate!
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?
New name to me. Does it work?
ugh found out I shouldn't use it! They gave me something else to try. If it doesn't work I may ask about using protopic in combination with benedryl or something. The steroid itself improves things so much but I don't want to be on it horribly long.
From what I read it is supposed to work really well however I found out I shouldn't be on it due to an allergy. I was now prescribed Elidel. No pain or discomfort putting this on even though that was possible like with the Protopic.
I meant to ask, do you still use Protopic now that its improved things? Or just use as needed? Also do you notice you get more colds or anything like that since it suppressed the immune system? I'm pretty sure this new one does the same thing so I'm wondering about that.
Hi Bennetta,
My son has been prescribed Elidel. It is similar to Protopic in that it was created to be a steroid alternative with no danger of thinning the skin. It's typically used to treat eczema, especially around areas where skin is delicate (i.e. the eyes) and also for childhood eczema, because children have such delicate skin. It is not as effective/aggressive in treating skin conditions as Protopic would be - but many people are happy with it. Depending on how severe your LS is, it may be just fine - and you wouldn't have to worry about thinning the skin.
If you keep using the Elidel, but find that it doesn't work effectively enough on its own, you could always try alternating it with Clobetasol so that at least you're not using the Clobetasol as often. And really, I shouldn't be giving you that suggestion, as I'm not a doctor! But since you'd said your dermatologist wasn't experienced in treating LS and wasn't quite sure what to do... you may need to combine your doctor's advice together with your own "experimentation" to figure out a solution.
One other comment to make, which actually relates to my experience with Protopic (a medication that is now irrelevant to you) - but it may still have value for you or others to read...
I've read before in the specifications that come with Protopic, that patients are only supposed to use the medication "until symptoms subside." In other words, according to the directions supplied by the manufacturer, they don't want patients using it in an "ongoing" fashion. Well, my dermatologist knows I'm using Protopic once each day, and she said to continue doing so. I don't have a choice -it's the only stuff that works for me and if I quit using it, the symptoms return. As everyone on this forum knows, the symptoms are quite undesireable. So what does one do? Apparently my doctor doesn't believe I have a choice either, since she's fully aware of how I'm using it, and is fine with it. My guess is that the original Protopic directions were written with eczema in mind, rather than LS. Dealing with LS is challenging, requires a lot of trial and error, and the way you finally figure out how to treat it may be "unconventional" - but then, so is the disease itself.
Good luck with the Elidel - please, SEND US AN UPDATE! on how you're doing after a few weeks; let us know how effective you think it is! If it's a good alternative for people to use, we need to know!
Thanks,
Denise
We must keep in mind the tiny dosages we use of these meds. Blanket concerns about both steroids and these immunosuppressants sound scary, but that's if you're taking systemic oral doses of, say, Prednisone for rheumatoid arthritis, or Tacrolimus after an organ transplant.
An immune suppressent medication would not work for me. My adrenal glands would not like it. Immune system better left alone.
Hey Bennetta,
Sorry - I didn't see your question about whether Protopic affected my immune system, until just now. No, I haven't noticed any issues. I think Morrell just explained it best (further down in this posting) when she said we must remember the small doses we use of these medications... and we are not taking them orally, to treat ourselves in a systemic fashion. Rather, these medications are topically applied, so the only immune system-related effects of the medication will be on the skin itself.
Also, when I spoke with my doctor about various concerns over Protopic-related risks a year or two ago, she responded that "you must remember, when they test these medications <such as on lab rats>, they're using very large doses of the medication; nowhere near what a patient would use." She told me not to be concerned. But of course, each person much make their own decision on that topic.
Denise
HI Denise.. I am too interested in using Protopic.. I did my own research on it and I willing to try but my doctor who is a derm, and according to my research is familiar with LS treatment wants me to use Clob.. Where do you leave? I am finding it hard to find a physician (derm) that has dealing with LS before
Hi Benetta,
As I just posted on the most recent discussion, my gynae is not happy with my level of LS after 18 months on clob, so she prescribed Protopic. It wasn't until then that I learned the reason doctors prescribe it as a last resort. It's just the cost. They're afraid to precribe it to women who would be served well by the much less expensive clob.
There are no side effects at this tiny level of topical use. Anything scary you find online about it will be about oral dosages meant to prevent organ rejection after transplant. I'm now very optimistic! If you hadn't posted this topic when you did, I might have resisted thi change in medication.
I'm applying nightly for a week, then twice a week permanently.
Hi Morrell,
Interesting change to Protopic, just the cost? Does it surpass Glob in a significant way?
Could you describe how it works better than Glob for you?