Aa
Lesions on the liver.
I told my doctor I was having sharp pains in the liver area so he sent me for a sono. My last sono was 3 years ago when I was dx with HepC. The new sono didn't show any significant changes over the 3 years, but did show something my doc questioned, so we scheduled an MRI. The MRI didn't show much else from the sonogram and the only information I had was that there are many lesions on my liver. Because of my medical history, my doctors wanted to follow up the MRI with a PET Scan just to be certain what we were dealing with and my insurance company said they wouldn't authorize it. Disturbing, isn't it! Anyway, the only way to find out what these lesions are is to do a biopsy, which my doc is not ready to do since there haven't been any real changes in 3 years. I has anyone had experience with these lesions? I am grade 1, stage 1, genotype 1, treating for the 2nd time.
Biopsy was done. Two cuts behind ears and one on chest. I've had them before and usually they stitch the cuts together. No stitches this time. Butcher? :) Results I think in a week. He's looking for Yeast.
New regimen is Elidel only on entire face, neck and chest. That's it for meds. I already know it probably won't work on neck and chest but I'm hoping it will help the face. Derm gave me some samples of Cetaphil Moisturizer Cream to use after Elidel. This is different from the Cetaphil Lotion I used before. Seem milder and doesn't sting except for the prominent rosacea areas on cheeks. Stings for about two minutes in those areas only which he said is OK. No antibiotics yet but he may recommend oral anti-fungal medication based on biopsy results. One of my theories is my body got overun with yeast due a combination of all the antibiotics I took during tx (4 months worth) combined with being immunosupressed from the treatment drugs. As to the Cetaphil bar soap, not sure if I can tell much difference from the liquid Cetahil, maybe milder. No alchohol in it. Hard to tell if things are getting better or worse since I used steroids for past three days. Time will tell.
Don't know what to say about your antibiotics as I haven't been on them yet. Not sure why he didn't prescribe. Maybe he wanted to give one thing a try at a time or maybe he first wanted to test out his theory about steroid-reactive rosacea or steroid-induced allergic reaction, i.e. the reason for testing two different steriods on the inside of my elbow joints. Saw your post from Cecil. If this thread gets full there's another by the same name one thread up.
New regimen is Elidel only on entire face, neck and chest. That's it for meds. I already know it probably won't work on neck and chest but I'm hoping it will help the face. Derm gave me some samples of Cetaphil Moisturizer Cream to use after Elidel. This is different from the Cetaphil Lotion I used before. Seem milder and doesn't sting except for the prominent rosacea areas on cheeks. Stings for about two minutes in those areas only which he said is OK. No antibiotics yet but he may recommend oral anti-fungal medication based on biopsy results. One of my theories is my body got overun with yeast due a combination of all the antibiotics I took during tx (4 months worth) combined with being immunosupressed from the treatment drugs. As to the Cetaphil bar soap, not sure if I can tell much difference from the liquid Cetahil, maybe milder. No alchohol in it. Hard to tell if things are getting better or worse since I used steroids for past three days. Time will tell.
Don't know what to say about your antibiotics as I haven't been on them yet. Not sure why he didn't prescribe. Maybe he wanted to give one thing a try at a time or maybe he first wanted to test out his theory about steroid-reactive rosacea or steroid-induced allergic reaction, i.e. the reason for testing two different steriods on the inside of my elbow joints. Saw your post from Cecil. If this thread gets full there's another by the same name one thread up.
Just saw your second post. Nothing negative with your labs as far as I can tell. Funny, haven't been thinking about my six-month at all with the skin problems. Not sure if I had a trade off right now -- skin back to normal for life or relapse -- which I'd choose. I might travel to Boston for a Fibroscan in a month or so although not sure what good the info will do me now. If fibrosis is down I guess I'll feel better, but if it goes up, then what? See my point.
Yeah, the triggers. Can't go out in the heat. Can't go out in the sun. Can't go out in the cold. Can't eat all my favorite foods. Can't do beer. Can't do coffee. Can't exercise too much. In other words, can't do my life as I know it. F*ck all that.
Yeah, the triggers. Can't go out in the heat. Can't go out in the sun. Can't go out in the cold. Can't eat all my favorite foods. Can't do beer. Can't do coffee. Can't exercise too much. In other words, can't do my life as I know it. F*ck all that.
Short report. Just came back from let's say Dr. Littleshot. Not the big shot I see next month but he was avail today and within my insurance group. He spent over an hour with me and it was obvious he was confused with all the different things going on. Frankly, the time he spent was a mixture of both me being grateful for the time, yet unsettled because he obviously saw this as a complicated case. Bottom line he wants me to drop sulfur for now, continue on Elidel if I can tolerate. Took two skin biopsies to culture. Looking for fungal infection among other things. If it comes out postive I think he'll put me on oral fungal medication followed by topicals that is if my doctor allows oral fungals which are processed in the liver. He didn't put me on antibiotics yet because the mix of rosacea, psoriasis and seb derm was confusing him I think and he wants to see what the Elidel will clear up first. As far as laser goes -- he has IPL in his office -- he says my skin is much too irritated and raw even to start thinking about that. Something nice to hear. Lastly, he wants me to due a skin patch test with two different topical steoids I've been using. Put one on the inside of each elbow twice a day and then check after five days for irritation. I believe his thinking is that I may be having an allergic reaction to one of the steroids but after workiing it through in my mind I think he's wrong as the problems pre-existed the steroids but I'll do the test anyway. So...two cuts behind my ears and back to the Elidel. I wish someone had explained to me the possible skin problems prior to treatment as I had pre-existing tendencies. Maybe I would have taken an systemic or just forgot the whole thing. As you know, this is no fun.
Haven't digested all your post yet but I just switched to the Cetaphil Bar Cleanser. It doesn't have any alcohol. Don't get the anti-bacterial bar, just the reg one. Been using it for two days, hard to tell if a difference because doing other stuff. I think the reason Dr. Fucku prescribed the liquid was because he wanted me to use it without water which would be impossible with the bar, of course. Makes sense from that point of view but I am using water so therefore the bar. Also read about "Zia Fresh Cleansing Gel" -- you can Google it. Supposedly very mild and non-irritating but may not remove sunscreen, makeup, etc, as well as the Cetaphil. Haven't used it.
As far as moisturizer is concerned, if you're using oils on your face, why not try Jojoba oil? That's seems to be what a lot of rosacea people use. Linday Sy (I gave you her site earlier) sells it mixed with something else and it's call "Vita" Oil I believe but pricier than plain Jojoba. Also people seem to swear by her ZincO cream. She has a trial pack of 4-5 products for I think 10 bucks. I ordered it.
I don't have you organization/motivation to wash pillowcases daily, eyelid routines, etc -- but I've read that all is important.
It's amazing what happened in the sun 2-3 days ago. Out for just 20 minutes in bright mid-day sun but wore spf45. As mentioned, my face got very red and raw. 2 days later it's actually turning tan a bit as if I've been to the Carribean for a week. Very strange. I've definitely got Rosacea -- the red was a little different from sunburn red but very deep -- but maybe there's still some riba sun sensitvity left. I guess I'll know NEXT summer.
Meanwhile, without a derm so to speak, I'm on a three-day regimen (today is day 3) of Elocon ointment for forehead (flaking seb derm) and a few small spots of sebosporiasis on face. Elocon is a potent mid level steroid I was told by one derm I could use 2-3 days at a time while others of course don't recommend it. I've used Elocon in the past and it usually does the trick.
Meanwhile I went back to Elidel, the immuno-suppreseant cream with black box warning for rest of face except direct rosacea areas which I'm still using that sulfur stuff on. Actually I put some elocon on that area as well one day but not sure what goes on first, etc, as the sulfur lotion seems thick and don't think you're supposed to acclude? (cover) Elidel. I kept the Elocon away from the main rosacea areas -- mostly for seb derm and this itching/burning/tight sensation on face. Just a little itching, but burning and drum tight feeling. Do you get that?
So the plan is to bring down inflammation of seb derm with the steroid and maintain it with the Elidel while using the sulfur on the rosacea skin and maybe the Elidel as well. The pimples have receded some but we'll see if that holds. I don't have anything with puss in them but one I picked at did bleed whatever that means.
Food triggers -- seems to be all my favorite foods -- eggs, yogurt, coffee, beer, etc, so not overly compliant here. Coffee actually seems to help prostate even thought he opposite is supposedly the case. Coffee is a diuretic, so at least for me it means I will go more during the day and therefore don't have to get up at night frequently. Without coffee it's the opposite. The literature doesn't say this however.
I cancelled the appointment with two derms ago (last derm I'm def not going back to) with the auto recording secretary from the hospital and now wonder if maybe I should have seen him. Dunno. I have another name or two I may try but maybe I'll see if I can bring things under control with the Elidel. What I like conceptually about Elidel is that it appears to work for both seb derm and rosacea as opposed to some treatments that work for one but irritate the other.
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I understand your reluctance to post above, but if you reconsider and have the energy, it might be helpful for others to hear your story, especially those about to make treatment decisions. I everyone should have the benefit of as much medical and anecdotal info as possible. You probably saw the post I opened "post tx side effects.." which is a continuation of another post by same name that "Cbee" opened on 7/3.
I'll post again when I have a better idea how my new regimen is working.
As far as moisturizer is concerned, if you're using oils on your face, why not try Jojoba oil? That's seems to be what a lot of rosacea people use. Linday Sy (I gave you her site earlier) sells it mixed with something else and it's call "Vita" Oil I believe but pricier than plain Jojoba. Also people seem to swear by her ZincO cream. She has a trial pack of 4-5 products for I think 10 bucks. I ordered it.
I don't have you organization/motivation to wash pillowcases daily, eyelid routines, etc -- but I've read that all is important.
It's amazing what happened in the sun 2-3 days ago. Out for just 20 minutes in bright mid-day sun but wore spf45. As mentioned, my face got very red and raw. 2 days later it's actually turning tan a bit as if I've been to the Carribean for a week. Very strange. I've definitely got Rosacea -- the red was a little different from sunburn red but very deep -- but maybe there's still some riba sun sensitvity left. I guess I'll know NEXT summer.
Meanwhile, without a derm so to speak, I'm on a three-day regimen (today is day 3) of Elocon ointment for forehead (flaking seb derm) and a few small spots of sebosporiasis on face. Elocon is a potent mid level steroid I was told by one derm I could use 2-3 days at a time while others of course don't recommend it. I've used Elocon in the past and it usually does the trick.
Meanwhile I went back to Elidel, the immuno-suppreseant cream with black box warning for rest of face except direct rosacea areas which I'm still using that sulfur stuff on. Actually I put some elocon on that area as well one day but not sure what goes on first, etc, as the sulfur lotion seems thick and don't think you're supposed to acclude? (cover) Elidel. I kept the Elocon away from the main rosacea areas -- mostly for seb derm and this itching/burning/tight sensation on face. Just a little itching, but burning and drum tight feeling. Do you get that?
So the plan is to bring down inflammation of seb derm with the steroid and maintain it with the Elidel while using the sulfur on the rosacea skin and maybe the Elidel as well. The pimples have receded some but we'll see if that holds. I don't have anything with puss in them but one I picked at did bleed whatever that means.
Food triggers -- seems to be all my favorite foods -- eggs, yogurt, coffee, beer, etc, so not overly compliant here. Coffee actually seems to help prostate even thought he opposite is supposedly the case. Coffee is a diuretic, so at least for me it means I will go more during the day and therefore don't have to get up at night frequently. Without coffee it's the opposite. The literature doesn't say this however.
I cancelled the appointment with two derms ago (last derm I'm def not going back to) with the auto recording secretary from the hospital and now wonder if maybe I should have seen him. Dunno. I have another name or two I may try but maybe I'll see if I can bring things under control with the Elidel. What I like conceptually about Elidel is that it appears to work for both seb derm and rosacea as opposed to some treatments that work for one but irritate the other.
------------------
I understand your reluctance to post above, but if you reconsider and have the energy, it might be helpful for others to hear your story, especially those about to make treatment decisions. I everyone should have the benefit of as much medical and anecdotal info as possible. You probably saw the post I opened "post tx side effects.." which is a continuation of another post by same name that "Cbee" opened on 7/3.
I'll post again when I have a better idea how my new regimen is working.
Quote from thread: " Apply Mometasone Furoate cream mixed with Squlene"
LOL. Of course that works, Mometasone Fuorate (Elocon cream) is a mid-strength steroid. Speaking of which I used the stronger version myself (Elocon Ointment) this morning on forehead and a few spots on face. Some derms say never use steroids on rosacea skin but some allow something like Elocon at most 1-2 days a week. I finally gave in and am using it to get rid of some sebsporiais scales on scalp and face and then switch over to Elidel, at least until I see my next derm.
LOL. Of course that works, Mometasone Fuorate (Elocon cream) is a mid-strength steroid. Speaking of which I used the stronger version myself (Elocon Ointment) this morning on forehead and a few spots on face. Some derms say never use steroids on rosacea skin but some allow something like Elocon at most 1-2 days a week. I finally gave in and am using it to get rid of some sebsporiais scales on scalp and face and then switch over to Elidel, at least until I see my next derm.
I think Nase uses IPL, not 100% sure, but I'm sure it's on his site. Nase's site is full of useful info, including some dietary stuff. But the one thing that keeps coming up is that what works for one person may not necessarily work for another.
You might also want to try Dr. Linda Sy's site:
http://www.lindasy.com/cgi-local/SoftCart.100.exe/?E+scstore
She also has a lot of information, sells some decent but expensive products, and I believe she'll also answer email questions about your condition.
The following site that I found at random uses both IPL and Verapulse http://www.perfectskincenter.com/foto-facial.htm Like you say, it may depend on what the doctor has so probably some research is in order.
This morning, I decided to get a little agressive and again reluctantly used the hydocortisone 1% but not on mid face with the rosacea is most pronounced. After, I went black box and used some Elidel (an immunosuppresive)on my forehead where I have both redness and some scaling. Sort of like a test spot.
For moisturizer, I'm using a a couple of drops of jojoba oil mixed with a very diluted (maybe 1%) solution of tea tree oil. Over all this, Fallene COTZ spf 58 sunscreen which contains only titanium and zinc as was recommended by one of my past derms. It also has a slight tan tint which covers up stuff. Seems to have a soothing anti-itch effect for me which is probably from the zinc. Also, went back to a healthier diet and reduced or eliminated some possible triggers such as too many simple carbs, grains, coffee, anything with yeast, anything too hot or spicy, etc, and of course, the sun.
I'm curious how the Elidel will work. Elidel, like it's slightly more potent cousin Protopic, are immunospressants. That interests me because the interferon we took turbocharged our immune system causing too much skin production causing the seb derm to flare. Hopefully the Elidel will balance it out. Anyway, I'm testing it but be warned it does have a black box warning for cancer although the derms I've talked to don't think there's any risk.
Anyway, like I said, I'm doing a spot test. Used it before and had some chest and sinus congestion but at this point I'm curious if it will help and maybe the sides will be temporary.
-- Jim
You might also want to try Dr. Linda Sy's site:
http://www.lindasy.com/cgi-local/SoftCart.100.exe/?E+scstore
She also has a lot of information, sells some decent but expensive products, and I believe she'll also answer email questions about your condition.
The following site that I found at random uses both IPL and Verapulse http://www.perfectskincenter.com/foto-facial.htm Like you say, it may depend on what the doctor has so probably some research is in order.
This morning, I decided to get a little agressive and again reluctantly used the hydocortisone 1% but not on mid face with the rosacea is most pronounced. After, I went black box and used some Elidel (an immunosuppresive)on my forehead where I have both redness and some scaling. Sort of like a test spot.
For moisturizer, I'm using a a couple of drops of jojoba oil mixed with a very diluted (maybe 1%) solution of tea tree oil. Over all this, Fallene COTZ spf 58 sunscreen which contains only titanium and zinc as was recommended by one of my past derms. It also has a slight tan tint which covers up stuff. Seems to have a soothing anti-itch effect for me which is probably from the zinc. Also, went back to a healthier diet and reduced or eliminated some possible triggers such as too many simple carbs, grains, coffee, anything with yeast, anything too hot or spicy, etc, and of course, the sun.
I'm curious how the Elidel will work. Elidel, like it's slightly more potent cousin Protopic, are immunospressants. That interests me because the interferon we took turbocharged our immune system causing too much skin production causing the seb derm to flare. Hopefully the Elidel will balance it out. Anyway, I'm testing it but be warned it does have a black box warning for cancer although the derms I've talked to don't think there's any risk.
Anyway, like I said, I'm doing a spot test. Used it before and had some chest and sinus congestion but at this point I'm curious if it will help and maybe the sides will be temporary.
-- Jim
FWIW
"Some of the most common prescription oral antibiotics include tetracycline, minocycline, doxycycline and erythromycin."
From: http://www.cnn.com/HEALTH/library/DS/00308.html
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I did read however that amoxycillin is sometimes used for H. Pylori bacteria that some suggest is associated with rosacea. My colonoscophy biopsy sample last year was negative for H. Pylori.
After yesterday, I've pretty much written off "fun in the sun" for this summer but hopefully a year off interferon will make some difference next summer.
"Some of the most common prescription oral antibiotics include tetracycline, minocycline, doxycycline and erythromycin."
From: http://www.cnn.com/HEALTH/library/DS/00308.html
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I did read however that amoxycillin is sometimes used for H. Pylori bacteria that some suggest is associated with rosacea. My colonoscophy biopsy sample last year was negative for H. Pylori.
After yesterday, I've pretty much written off "fun in the sun" for this summer but hopefully a year off interferon will make some difference next summer.
My skin calmed down a little this morning after reluctantly using hydrocortisone 1% on face at bedtime. I avoided the cortisone on the main mid-face rosacea portion where redness is most prominent and I have gotten pimples. Stupid of me to have sun-bathed in the mid-day sun even though it was only 30 minutes and I had SPF 45 on. My thinking was maybe it would help the seb derm without activating the rosacea. Five minutes would probably have been more appropriate.
My new plan is to see another derm or two and see what they have to say but more specifically to ask for oral antibiotics. I'm also looking into IPL (intense pulsed laser). Did you start with the oral antibiotics yet? It probably takes some time to kick in. I also tried Jojoba oil yesterday for moisturizer and it seems very non-irritating. Today, I'm going to mix the Jojoba oil with a diluted (5% solution) of tea tree oil and see how that goes. Antibiotics and lasers aside, I am hoping time will be our friend as the interferon leaves our bodies.
Hopefully sharing treatment information like this will be helpful. Beyond that I don't have the strength to jump over shadows and fix something that is working. Wish I had some answers but the only answer seems to be trying different things, time and patience. There is a huge mental component to all this I am finding out in my own case with the mirror, thing, etc. I going to try and work on that until things finally clear up, because like you found out with the cable guy, it probably bothers us more than others.
-- Jim
My new plan is to see another derm or two and see what they have to say but more specifically to ask for oral antibiotics. I'm also looking into IPL (intense pulsed laser). Did you start with the oral antibiotics yet? It probably takes some time to kick in. I also tried Jojoba oil yesterday for moisturizer and it seems very non-irritating. Today, I'm going to mix the Jojoba oil with a diluted (5% solution) of tea tree oil and see how that goes. Antibiotics and lasers aside, I am hoping time will be our friend as the interferon leaves our bodies.
Hopefully sharing treatment information like this will be helpful. Beyond that I don't have the strength to jump over shadows and fix something that is working. Wish I had some answers but the only answer seems to be trying different things, time and patience. There is a huge mental component to all this I am finding out in my own case with the mirror, thing, etc. I going to try and work on that until things finally clear up, because like you found out with the cable guy, it probably bothers us more than others.
-- Jim
first paragraph is a little confusing...should have been "where I have gotten pimples in the past" -- no new pimples this morning from last night's hydrocortisone, thankfully.
Not up on the antibiotics yet, but I did read that tetracyline and it's family members doxycylene and minocyline are often used.
What you're on I believe is a sub clinical dose of a med used for gum disease also in the doxy family which I will bring up at my next derm appointment. Maybe it takes time to kick in or you need a higher dose. If you're allowed, try taking it with some food or milk and maybe it will be kinder to your stomach. If it doesn't work, maybe you need something at a higher dose, but like I said haven't read all that much on antibiotics yet other than they seem to be indicated if the other stuff doesn't work.
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I was under the impression that IPL (intense pulsed light) which is technically not a laser, is the most advanced light treatment as opposed to the Pulsed Dye Laser which is a real laser. *** If you have heard of any laser better than IPL please let me know***
Here's an article on the two types of lasers discussed:
http://tinyurl.com/rekdv
IPL costs around 500-800 per treatment with the big shot derms, so I'm guessing this is going to cost initially 2000-4000 for 4-5 treatments if I go that route plus maintenance sessions, and if after they look at my face decide that it will give good results. Don't think insurance will cover.
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I truly believe there are solutions to this albeit time-consuming and perhaps costly ones. I decided this morning not to let the mental part get to me in the meanwhile.
-- Jim
What you're on I believe is a sub clinical dose of a med used for gum disease also in the doxy family which I will bring up at my next derm appointment. Maybe it takes time to kick in or you need a higher dose. If you're allowed, try taking it with some food or milk and maybe it will be kinder to your stomach. If it doesn't work, maybe you need something at a higher dose, but like I said haven't read all that much on antibiotics yet other than they seem to be indicated if the other stuff doesn't work.
---------------------------
I was under the impression that IPL (intense pulsed light) which is technically not a laser, is the most advanced light treatment as opposed to the Pulsed Dye Laser which is a real laser. *** If you have heard of any laser better than IPL please let me know***
Here's an article on the two types of lasers discussed:
http://tinyurl.com/rekdv
IPL costs around 500-800 per treatment with the big shot derms, so I'm guessing this is going to cost initially 2000-4000 for 4-5 treatments if I go that route plus maintenance sessions, and if after they look at my face decide that it will give good results. Don't think insurance will cover.
---------------------------------------------
I truly believe there are solutions to this albeit time-consuming and perhaps costly ones. I decided this morning not to let the mental part get to me in the meanwhile.
-- Jim
Sunday night: Just went to the hydrocortisone. So much for treatment working. Should not have gone out in the noon sun today even with SPF 45. Becoming a PITA. Hopefully it will heal over the winter when the sun disappers. Did I mention I'm thinking of acupuncture and/or Chinese medicine? Getting fed up and desperate here.
maybe you answered this but what eyelid scrubs do you use? Read a few drops of baby shampoo in a cup of warm water with a cue tip. For example, today my right upper eyelid is red when peeled back and right eye slightly closed compared to left. Both eyes watering but no itching. Sounds milder than what you have and what I've read but ocular rosacea has many forms and apparently occurs in close to 50 per cent of all those who have rosacea. Other symptons I never associated with this over the past year are light sensitivity and "grit" feeling in eyes. I'm surprised my opthamoloigst didn't pick up on this. Just told me to wear sunglasses because I have light eyes.
Have a good weekend. Look into IPL (intense pulsed light) treatment if you have time. Lately, I've been experimenting with different solutions of tea tree oil (mix 100% oil with water)from around 10% to .25%, depending upon how sensitive a particular area is. This morning redness had subsided some but too early tell if it was the tea tree. Got to get an eye dropper to be more precise.
-- Jim
-- Jim
Who dx your ocular rosacea? Your derm or opthamologist, or both? My eyes have sometimes felt gritty, watery during tx and post, and vision often blurry. I just figured it was dry eyes from tx and used artificial tears liberally. Itching was only occasionally so didn't think much of it. A few days ago I exposed my eyelids and they were redened. Maybe I only have a mild case of it but I'm due for an appointment with ophtomologist anyway so will check. Tell me about the Bacitracin. Is it a pill? Topical?
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Antibiotics -- he wnats you to take 20 mg Periostat twice a day? For how long? Are you sure it isn't 200mg? Some research suggests doxycyline 200mg/day for six months for rosacea, so unless Periostat is dosed differently, seems very low. What side effects are you concerned about?
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Currently waiting for next derm appointment and have a couple of names to call. Already made the decision to go out of the insurance network if necessary and just go for the right derm and pay out of pocket. I won't be surprised if I get better treatment with a derm that doesn't accept insurance.
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Meanwhile, I using Cetaphil (with water) on face 2-3 times a day. That sulfur cream 2X a day on face, forhead, neck, wherever there is redness or pimples, or irritation for that matter. The last couple of days I've gone back to the tea tree oil. I take off the cap and fill it with water. Then add 2-3 drops of oil, making a diluted solution of maybe 10-20 to 1. Then put a tissue or cotton ball in the solution and apply wherever pimples but so far ovoiding what I consider to be very sensitive spots. We'll see how this works. Plan is to gradually increase or decrease percentage of tea tree oil depending on how things go.
As far as future, we'll see what the new derms say but a few approaches I see feasible are oral antibioitics and/or going back to to Metrogel, and/or pulsed-dye laser or Photoderm treatment. That said, part of me is in watch n' wait mode. If current minimal treatment (and time) starts to reverse what's going on, I may decide to hold off on oral antibiotics or even the pulsed-dye laser. The hope still is that things will get better as I distance myself from the tx drugs so somewhat reluctant to do too much too soon. Still, early intervention is advised with rosacea, so I'm also reluctant to let things slide. We'll see.
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Antibiotics -- he wnats you to take 20 mg Periostat twice a day? For how long? Are you sure it isn't 200mg? Some research suggests doxycyline 200mg/day for six months for rosacea, so unless Periostat is dosed differently, seems very low. What side effects are you concerned about?
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Currently waiting for next derm appointment and have a couple of names to call. Already made the decision to go out of the insurance network if necessary and just go for the right derm and pay out of pocket. I won't be surprised if I get better treatment with a derm that doesn't accept insurance.
---------------------------
Meanwhile, I using Cetaphil (with water) on face 2-3 times a day. That sulfur cream 2X a day on face, forhead, neck, wherever there is redness or pimples, or irritation for that matter. The last couple of days I've gone back to the tea tree oil. I take off the cap and fill it with water. Then add 2-3 drops of oil, making a diluted solution of maybe 10-20 to 1. Then put a tissue or cotton ball in the solution and apply wherever pimples but so far ovoiding what I consider to be very sensitive spots. We'll see how this works. Plan is to gradually increase or decrease percentage of tea tree oil depending on how things go.
As far as future, we'll see what the new derms say but a few approaches I see feasible are oral antibioitics and/or going back to to Metrogel, and/or pulsed-dye laser or Photoderm treatment. That said, part of me is in watch n' wait mode. If current minimal treatment (and time) starts to reverse what's going on, I may decide to hold off on oral antibiotics or even the pulsed-dye laser. The hope still is that things will get better as I distance myself from the tx drugs so somewhat reluctant to do too much too soon. Still, early intervention is advised with rosacea, so I'm also reluctant to let things slide. We'll see.
did some quick research on periostat. It's a low dose doxy hydrate labled for periodontal use. Sounds promising as the low dose supposedly inhibitits antibiotic resistance. Also, it appears to have less sun sensitivity (maybe even none) compared to regular doses of doxy. It's on my list to discuss with next derm. I'll also look into that special cream you mentioned.
forgot to mention I think I now have ocular rosacea. Probably had it all along but thought the "grit" and light sensitivity.was from tx and have been liberally using artificial tears and sunglasses for some time now. My eyelids are naturally sunken, so never noticed but yesterday, peeled them back and, yes, they were red. Any advice other than steroids? I'm convinced the topical steroids make things worse every time I use them.
Something on Biafine, I'll read it later myself:
http://www.biafine.orthoneutrogena.com/
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The Loprox shampoo -- head, scalp, maybe forehead, eyebrows, if tolereated. OK. But what about using it on your entire face for the seb derm?
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Spoke to my hepatologist today about Doxy, Tetracycline and said no problem although that's what he always says. (Wants to have a drink with me to celebrate SVR at six months LOL). Anyway, unless things clear up miraculously very soon, I think Tetracyline or Doxycyline or something like that is the way to go. Same family of drugs I think. Also going to look into PLT, pulsed light therapy and Photoderm to reduce redness. Insurance will not cover as it's considered cosmetic but at this point I really don't care and I'm sure you'll understand. Also decided Dr. F*ckU is history. I will not tolerate being treated like a two year old even if I have to go through every dermatologist in the state. I got two more names to try. Meanwhile, may just go back to Metrogel to spite Dr. F*ckU. LOL. I'll re-read the last few posts in depth when I have more time. BTW ALT is 16 as of yesterday.AST 25 and GGT back down to 25 (so much for my NP's fatty liver theory). Maybe the roobios tea caused the GGT to rise? Since I liked the tea what I plan to do one of these days is do another GGT for baseline -- then drink one or two cups of roobios for a week and then test the GGT again. Sound like a plan, hey?
-- Jim
http://www.biafine.orthoneutrogena.com/
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The Loprox shampoo -- head, scalp, maybe forehead, eyebrows, if tolereated. OK. But what about using it on your entire face for the seb derm?
--------------------------
Spoke to my hepatologist today about Doxy, Tetracycline and said no problem although that's what he always says. (Wants to have a drink with me to celebrate SVR at six months LOL). Anyway, unless things clear up miraculously very soon, I think Tetracyline or Doxycyline or something like that is the way to go. Same family of drugs I think. Also going to look into PLT, pulsed light therapy and Photoderm to reduce redness. Insurance will not cover as it's considered cosmetic but at this point I really don't care and I'm sure you'll understand. Also decided Dr. F*ckU is history. I will not tolerate being treated like a two year old even if I have to go through every dermatologist in the state. I got two more names to try. Meanwhile, may just go back to Metrogel to spite Dr. F*ckU. LOL. I'll re-read the last few posts in depth when I have more time. BTW ALT is 16 as of yesterday.AST 25 and GGT back down to 25 (so much for my NP's fatty liver theory). Maybe the roobios tea caused the GGT to rise? Since I liked the tea what I plan to do one of these days is do another GGT for baseline -- then drink one or two cups of roobios for a week and then test the GGT again. Sound like a plan, hey?
-- Jim
Here are some pics:
I had Plantar Pustular Psoriasis starting at around week 14 of treatment to almost the end. Fortunately, it is almost gone (some mild burning persists) but the possiblity of relapse is always there. My case was worse than shown in this picture (deeper and more defined plaques) and at times I had to stop my daily short walks due to pain. I ended up treating with X-trac laser. Also had it on the palms of both hands but not as bad. Wore gloves a lot in public.
http://www.gpnotebook.co.uk/cache/859111455.htm
I had guttate psoriasis for most of treatment on my front and back.
It looked like in this picture but I had only 40 of the coverage shown on my front and about 60% on my back. VERY uncomfortable. Swimming in a public pool was out of the question.
http://www.psoriasis.org/about/psoriasis/guttate.php
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You can probably see why I let the seb derm and rosacea slide on treatment with all this other stuff going on, but I did make the doctor aware of my face redness but he only seemed interested in the other stuff. I just figured everything would clear up when tx ended but of course it hasn't. Maybe you're getting an idea now why I caution people about the risks and rewards of treating. SVR or not, my QOL was definitely better before treatment. Sure hope that changes.
I had Plantar Pustular Psoriasis starting at around week 14 of treatment to almost the end. Fortunately, it is almost gone (some mild burning persists) but the possiblity of relapse is always there. My case was worse than shown in this picture (deeper and more defined plaques) and at times I had to stop my daily short walks due to pain. I ended up treating with X-trac laser. Also had it on the palms of both hands but not as bad. Wore gloves a lot in public.
http://www.gpnotebook.co.uk/cache/859111455.htm
I had guttate psoriasis for most of treatment on my front and back.
It looked like in this picture but I had only 40 of the coverage shown on my front and about 60% on my back. VERY uncomfortable. Swimming in a public pool was out of the question.
http://www.psoriasis.org/about/psoriasis/guttate.php
----------
You can probably see why I let the seb derm and rosacea slide on treatment with all this other stuff going on, but I did make the doctor aware of my face redness but he only seemed interested in the other stuff. I just figured everything would clear up when tx ended but of course it hasn't. Maybe you're getting an idea now why I caution people about the risks and rewards of treating. SVR or not, my QOL was definitely better before treatment. Sure hope that changes.
In a rush today so I might respond more in detail later after I re-read your post.
Your big shot doc seems on target and I'm sure I'll be put on oral antibiotics as well for the rosacea. Tetracycline is the first choice, do you know why he recc doxycyline? Maybe your liver?
I'll look up your cream but probably something like metrogel -- I'm using the sulfur stuff instead but maybe my new derm will change that, when I get a new derm.
So he wants you to use Loprox shampoo on your face or the the Loprox cream? I found the Loprox irritated my face but a lot of docs seem to prescribe it and maybe I'll have to go back.
As far as the cosmetic angle, women have the advantage they can cover things up liberally with makeup. Too much makeup doesn't look right on men.
Cetaphil is reccomended by many derm's. There are different formulations for dry, normal and oily skin, etc, but I just use the regular one that doesn't specify. Yes, it has alchol but seems milder than soap. Got to keep experimenting because what irritates one persons skin works for another.
later.
-- Jim
Your big shot doc seems on target and I'm sure I'll be put on oral antibiotics as well for the rosacea. Tetracycline is the first choice, do you know why he recc doxycyline? Maybe your liver?
I'll look up your cream but probably something like metrogel -- I'm using the sulfur stuff instead but maybe my new derm will change that, when I get a new derm.
So he wants you to use Loprox shampoo on your face or the the Loprox cream? I found the Loprox irritated my face but a lot of docs seem to prescribe it and maybe I'll have to go back.
As far as the cosmetic angle, women have the advantage they can cover things up liberally with makeup. Too much makeup doesn't look right on men.
Cetaphil is reccomended by many derm's. There are different formulations for dry, normal and oily skin, etc, but I just use the regular one that doesn't specify. Yes, it has alchol but seems milder than soap. Got to keep experimenting because what irritates one persons skin works for another.
later.
-- Jim
What I don't think got across is that I had a bx and a sono 3 years ago. Nothing has changed on the sono from then. I had the lesions then and they haven't changed to this point. No change is a good thing!! I wasn't aware of them 3 years ago - the doc I had didn't tell me about them. Now I have a new doctor and since I had leukemia 20 years ago, I have my oncologist involved too. My hepatologist and my oncologist talk with each other and have agreed on what to do about these lesions. I trust my oncologist whole heartedly - he did save my life 20 years ago! I was just wondering if anyone else had had heard of "lesions" before.
I am on my second round of treatment because the first time around the doctor I had cut my meds instead of giving me rescue drugs. My new doctor said I was mis-treated the first time around. So basically, I lost 48 weeks of my life with my kids and family because my meds were cut! I'm on the second round with rescue drugs at week 10. I will have blood work done in about 2/3 weeks to check the viral load and see if this stuff is working.
Thank you for all the helpful comments!
I am on my second round of treatment because the first time around the doctor I had cut my meds instead of giving me rescue drugs. My new doctor said I was mis-treated the first time around. So basically, I lost 48 weeks of my life with my kids and family because my meds were cut! I'm on the second round with rescue drugs at week 10. I will have blood work done in about 2/3 weeks to check the viral load and see if this stuff is working.
Thank you for all the helpful comments!
Kamo, you say you are on the 2nd tx, how far along? could the meds be given false readings of some sort? maybe the scan is showing the battlegrounds bt the meds and the virus. just a guess.
If you now have lesions on your liver, something has obviously changed. I would find a new doctor and get the biopsy.
If you haven't had a biopsy in 3 years you should get another. This is not a linear disease--you could sit at Grade 1/Stage 1 for decades and then deteriorate to Grade 3/Stage 3 in months. The only way to get definitive answers to the condition of your liver is through a biopsy. All those other tests give some information but cannot be relied on for the accuracy that you need in order to help you make treatment decisions vs watchful waiting.
Good luck. Let us know what happens next. Treatment isn't fun but it's doable--I'm on my 48th week of combo therapy and still kickin', still complaining. The sides have been tough, but everyone reacts differently and in my case, it was definitely time to treat. Based on your biopsy results you may find that you have time to wait for kinder gentler treatments or you may decide it's time to do it. It's a tough decision with accurate info--it sounds like your doctor is not as up to date in his methods as might be (not unusual at all with this disease!)
Good luck. Let us know what happens next. Treatment isn't fun but it's doable--I'm on my 48th week of combo therapy and still kickin', still complaining. The sides have been tough, but everyone reacts differently and in my case, it was definitely time to treat. Based on your biopsy results you may find that you have time to wait for kinder gentler treatments or you may decide it's time to do it. It's a tough decision with accurate info--it sounds like your doctor is not as up to date in his methods as might be (not unusual at all with this disease!)
I did have a biopsy in the begining of all this 3 years ago. That's how they know my stage and grade. The sono's and MRI's haven't changed in 3 years which is a good thing. It rules out any cancerous tumors/growths. I can't help but wonder why the doctor I had 3 years ago didn't persue this - these lesions were there then and I knew nothing about them. The doctor sending me for more test to find out something conclusive is a new doc. Plan B is to send me for another MRI in about 2 months from now to see if there are any changes and if we need to at that point, we will do what we have to with the insurance company to get done whatever needs to be. It's scary and very frustrating even though I've been told not to worry.
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