Protopic Trial- Round 2

I had a phone conversation with my doctor on 21 december last year and since I had no results with Protopic 0,03% she decided I should boost the percentage: I am now doing a three week trial with Protopic 0,1%. I apply a thin layer of cream on the affected areas on my lips two times a day (mornings and before going to bed).

Day 1-14 Summary

So far nothing have happened, either good or bad. No improvement, no side effects. The cream feels like vaseline/petroleum jelly on my lips. I'm still eating 500 mg Valtrex per day, so maybe that is countering some of the known side effects (like various forms of herpes simplex viruses).

My peeling cycle is pretty much the same as stated in the Protopic 0,03% Trial post.

One more week to go.

PS. I hope you all had a great holiday and New Year!

Protopic 0,03% Trial - Day 39 Postmortem

This is the summary of my trial with Protopic 0.03%. I have been using it two times a day for 39 days.

Have it helped?

I have not noticed any significant improvement. In the beginning I experienced that the skin underneath the flakes was less raw than before, but now I'm not sure that was due to any effect of the Protopic (during this trial the skin's "rawness" have varied from peel to peel).

Side Effects?

I have not noticed any side effects during this trial, except for a slight numbness and a tingling feeling on two different occasions the first week. Possible also that the lower border on the lower lip have been a little more red than it was before.

The Next Step

After a phone conversation with my doctor I am currently doing a three week trial with Protopic 0.1%. Read more about that in the Protopic Trial - Round 2 post.

Protopic 0,03% Trial - Day 1-25 Summary

About three weeks ago I started a Protopic 0.03% (topical tacrolimus) treatment prescribed by my doctor. I have been rubbing a thin layer of cream on the affected areas of my lips twice a day (in morning and before going to bed).

Have it helped?

I have not noticed any significant improvement so far. The only thing I have noticed is that the skin underneath the peeling skin might be less raw than before.

Side effects?

I was very hesitant to try Protopic as I wrote in this post. Luckily enough I have not been noticing any of the scary side effects (not even the very common burning sensation). On day 3 my lip felt slightly numb though, and on day 5 I felt a ticklish sensation on my lip when touching it with a cotton swap. Other than that, nothing.

Current peeling cycle

My current peeling cycle looks like this: the skin builds up like before over the course of 1-3 days. On the forth day I can usually peel everything off without too much force. On day 5 and 6 my lips look their best. Day 7 it all starts over again. Sometimes this cycle differ a little.

I have not got any treatment time limit so I will have to book a phone meeting with my doctor and ask. Until then I will continue using Protopic.

Decent day.

Not so good day.

Good day.

Exfoliative Cheilitis Biopsy Result

I have recieved the analysis result from the biopsy I did earlier this summer: it did not show anything significant/new except a general inflammation of the skin, i.e. cheilitis.

The medical doctor told me she had read up on the few articles out there and also discussed treatments with collegues. She advised me to use a moisturizer (vaseline) and try Protopic 0,03% (an antiinflammatory immunosuppressant cream).

I will not go into details about the discussion I had with the doctor about how to proceed with an evaluation of the treatment, new tests, research etc. All in all there will be none. No more appointments, no evaluation of the treatment, no further tests. Somehow I got the impression when I met her the first time this summer that she would not "let met go" so to speak, like all the other doctors have done, but I guess I was naive. Basically she told me "we can't just do random test in order to find anomalies, and there is not enough people with your condition to initiate any research".

I understand that this is the way things go (I have studied scientific theory and experimental design in university), but it made me angry and upset anyway. She did not even ask how (or if) I would cope with this, which I felt was a little strange considering that she has just confirmed that I have a chronic condition to which there is no consistent successfull treatment (except in one documented case), and that will not be researched because to few people suffer from it. Ouch.

To use or not to use Protopic

Alot of people on the Curezone Forum have tried Protopic with different results: small improvements, worsened condition to no change whatsoever. I have not heard of anyone that was cured completely.

According to the patient information leaflet Protopic have some common (> 1%) side effects like skin irritation, rash and herpes viral infections. Some individuals on the forum have reported that their exfoliative cheilitis first worsened for a couple of weeks before they saw any improvements (if any).

However there is one documented case where Protopic have been a successful treatment ("Exfoliative cheilitis successfully treated with topical tacrolimus", Authors: M. Connolly, C. Kennedy. Published in: British Journal of Dermatology Volume: 151, Pages: 241-242,Year: 2004). I have not read this report myself in it's entirety but you'll find what seems to be a summary in a forum post here.

I'm hesitant to Protopic for two reasons: first I'm not really up for a potentially worsened condition right now since I'm low on energy and have a alot of social activities planned for the comming weeks. Second, there might be a link between Protopic and cancer. There are quite some articles online about this, just google "protopic" and "cancer". There is also a paragraph in the patient information leaflet:

"Since commercial availability a very small number of people who have used Protopic ointment have had malignancies (for example, skin or lymphoma). However, a link to Protopic® ointment treatment has not been confirmed or refuted on the available evidence so far."

Has not been confirmed OR refutated. Hm... But then again, almost everything these days is linked to cancer. I will do a trial with Protopic, I just need to prepare myself mentally and regain some energy first.

You can read the Protopic Patient Information Leaflet in it's entirety here.

Lips update

This is what my lips looks like today. There have not been any significant improvements in the last couple of weeks. If I don't do any manual peeling the skin builds up and whitens. When it eventually peels the skin underneath is raw and sensitive. The lip looks best one of two days after a peeling. For me I think the best strategy is to manually peel the skin every day or every other day, because the lip seems to become more inflammed (more red) if I let the skin build up. But I need to do some more testing before I can confirm that.

Peace and energy to you all!