I am so sorry the treatment was not effective. Do you have any idea whay it didn't work the first time? Did you have to reduce the meds due to anemia or neutropenia? Were you compliant? Were you dosed correctly to begin with? It truly sounds like you may need to try again. I have heard wonderful things about milk thistle and liver aid, but it sounds like they aren't doing the job either. Had you had a biopsy? What stage/grade? Sorry for all the questions. I really don't have any answers, but perhaps you can get in on on of the new trials for non-responders.
Hi_ I know how depressed a liver patient can get. I had toxic hepatis from lead poisoning and was so depressed I wanted to kill myself. I had a helpful doctor and many years of restricted diet that helped. I am glad your brother has you for support because depressed people need to be uplifted and often. Sugar of course is a depressant. I have found another herb that helps clean the liver which I used. It is dandelion root. No side effects, can find it in any health food store. I took lots of it and drank lots of water & ate lots of fresh fruits and veggies. I am happy to say I have no signs of the lead in my liver now. As for fibro....I got that and after a couple years of misery, I read about a very high protein diet...lots of meat and veggies with nothing white whatsoever. It worked for me and now when I slip up it takes at least three days for the pain to subside and the energy to begin again. This year I have the fibro nearly completely out of my life because of no whites allowed in my diet. Amazing that what we eat can affect us so. It is worth a try and it sure can't hurt you. I sympathize with you having it because it sure does ruin the quality of life. Best to you and your brother. Keep hanging in there.
My neck has also felt very wet and clammy througout treatment. I don't think this is sweating as much as overractive sabaceous glands caused by the interferon. Remember, the sabaceous glands are where both seb derm and rosacea are.
My neck -- sides and back primarily -- get a solid beet red, not spots. It's been pretty much this way for months at a time. Once it went away for a month but then came back. So I thought maybe contact dermatitis? The problem with contact dermatitis is that it often takes weeks for the reaction to take place so very hard to find the culprit. In other words it may have been something I wore a month ago, not yesterday. The idea with the silk is to add a barrier. Maybe silk turtlenecks to wear under everything would do the trick but not my fashion style. Maybe this winter if it keeps up.
But it it's not contact dermatitis that leaves seb dermatitis or rosacea. Rosacea can also be found on neck and forehead.
The only thing that makes rash go away are topical steroids but as you know they can spread the rosacea so I'm wary. I may try and repress it with topicals again and then try and suppress the reaction with the Elidel. The back of my neck feels very raw, painful at times. I wonder if that's because I trim my hair back there. Never had any of these problems before treatment.
Face is better, only a couple of pimples but I still look like I have a slight sunburn and haven't been out of the house hardly for four days now. As I mentioned, when I did go outside and spent some time in the sun last week, I turned beet red and remained so for days. Intiailly I thought this was riba sun sensitivity but since the rest of my body is not sun sensitive, I 'm pretty sure it's sensitivity from the rosacea. Unlike with women, walking around with sun umbrellas is out of the question. This summer is totallly shot and looking forward for a sunless winter. Totally sucks.
All your posts seem to have disappeared both from this thread and the previous "lesion" threads. What's up?
I got an e-mail from med help that said I posted copyrighted material. They were refering to the forum letter from Dr.C.
Had no idea that was copyrighted. How does one know that was copyrighted, I mean it is a puplic forum.
Not the foggiest idea why all my threads were zapped.
Now I have no reference what you said, any of the links etc.
I did save the links in my documents, but that won't do me any good now. I made some hard copies, but not from all. In the future I will do just that.
I may ask med help why they thought it necessary to zap all my posts.
PS Pardon, your posts are still there.
I just looked in my documents, and it's all there, so no problem for me. I save all our conversations for reference.
I don't feel well today, but for sure write tomorrow what Big shot said, and what I am doing now.
I was wondering what happened. It's very odd because folks post copywrited material all the time -- although I didn't think Q&A's were -- and usually the most they do is to zap the individual post or sometimes the entire thread. In your case I believe they removed every post you've written for Med Help since you became a member. It's possible the hit the wrong button by mistake when trying to delete a post and did a global deleting all your posts. If you want them back -- you may or may not -- maybe write Med Help and ask.
I printed out a few of your posts but not all. When you get a chance -- and no rush on this -- maybe you can re-cap some of the meds you've taken in the past --good and bad -- and what you're taking now. I'll be out of town for a few days so not sure when I'll check back.
Here's a workout tip when you start working out. As you know, heat is one of the rosacea triggers as well as sunlight and just about everything else. What I did today at the gym was to soak a towel in the ice cold water from the fountain and put it over my head and neck while I did 40 minutes on the eclipse machine. It seemed to make a significant difference in how much I heated up.
The ideal exercise for rosacea would be swimming in a cool pool if one could tolerate the chlorine. I plan to try this sometime in the future but my derm said my skin is much to inflamed now to even think about it. No argument there. BTW the Elidel and the Cetaphil Cream moisturizer seem to be doing a decent job especially with the seb derm as flaking is gone. I also wrote Dr. Sy from Linda Sy products and she emailed me some tips on how to apply certain stuff. I purchased samples of her Zinc0 tinted and untinted sun blocks and will probably purchase both.
I just send a letter to med help...let's see what happens tomorrow.
Jim, I did too much at the club. I am hurting all over, and it is affecting my thinking. I feel awful, so please, I need more time.
No rush at all on recapping the meds because right now I'm staying with the minimal regimen until I have another derm look at things. My neck, shoulders and upper chest have become very red an raw to the point of pain. I'm starting to think that some of it (at least the neck) may be rosacea instead of the seb dermatitis and therefore the topical steroids I've used on neck and chest may be counter productive. I really need an accurate diagnosis but for some reason that's not so easy as they don't all agree on what is what. Maybe the biopsy will tell a little but from what I read biopsy is not definitive for rosacea. You got to go easy in the gym since your body/muscles are used to it. Also, exercise is a rosacea trigger for some people as is heat, and the two often go together. Hope you recover soon.
Biopsy on chest and behind ear is consistent with seb derm although that doesn't rule out overlapping rosacea which there is no test for. I'm starting to get fed up. It seems that working out at the gym is now flaring things. Heat as you know is a rosacea trigger, or maybe it's the overhead florescent lights or a combination. For some reason during treatment the skin problems were more tolerable because I thought it had a beginning, middle and end. Now, I don't see that end very clearly and on top of that don't have a lot of confidence that I'm getting the right medical advice to approach this properly. I called up my latest derm and they asked if I wanted to see him at 9:30 or 9:45. Yup, this is my life and he's allcoating 15 minutes to figure things out. Looks like I'll have to go to a private doctor soon and pay out of pocket.
2-3 days ago my face flared again and got crimson red. Since then i tried to remove as many "triggers" as possible.
Sun -- Only went out a few times before 5PM and then with a heavy sun block and hat.
Working out -- I had been picking up my workouts lately and I think the heat may have helped trigger the outbreak. I went back to a moderately paced 30 minute walk. Also stopped the weight lifting because of the "pump".
Lights -- My gym has overhead ultraviolet lights. This also may be a trigger. For now I'm doing my walking workouts outside, just around sundown.
Alcohol -- Stopped my nightly beers. Alcohol is a known trigger.
Coffee -- Stopped coffee. Another known trigger.
Other food -- Won't eat or drink anything hot. Let it cool down first and have some ice water handy. Also eliminating simple carbs and limited fruit. If I do have fruit, I have it with some fat and protein so the carbs are absorbed slower into the system.
Eliminated mangoes and pinaapples, both of which I eat and are known triggers. Also avocado.
Stress -- trying to be conscious of my stress levels. Stress causes the system to heat up which can cause flushing. Think calm. Think zen.
Anyway, the combination of all of the above seemed to have helped bring the red down signficantly. It could be coincidence or not, but everything I listed and did are known rosacea triggers. Once (and if) I get things under control I will start adding things back one by one to figure out which the triggers effects me, as some of them may not. Probably should keep a log book cause it gets complicated. Next step is to get rid of the seb derm and itching on neck, back and chest. Right now just using Elidel. Any shirt not loose and all cotton irritates me. As soon as I come home I take my shirt off. I know topical steroids will help but trying to avoid them until I speak to a derm I have confidence in.
Hope this finds you well.
stopped yogurt too. another known trigger.
lastly, forced myself to sleep as much as possible the last couple of days, including a long afternoon nap. Sleep has a restoritive effect on the body and I used it during treatment a lot when nothing else would work. It also can relieve stress. At least that's the theory.
Just thought I'd add that I don't have the pustules or whatever they're called like you mention. I did have like five or six pimple like things on nose and upper cheeks which I figured was a rosacea reaction to the topical steroids. They have pretty much resolved and when I see them coming back I used the sulfaced. Other than that, I have like one or two raised "bumps" on side of face that come and go. The big problem is the persistent redness/facial flushing that can range from looking persistently like I've had a little too much sun beach which I could live with but it can also get a bright crimson red in areas when it gets just a little worse.
Just want to add that I still don't understand what happend with the missing stuff. I've never seen that happen to anyone else here, even the ones that are no longer allowed here. Just don't get it at all, espcially since it wasn't an article even.
I have been coming here daily , looking for your comments...just to let you know you are not writing in vein.
The story here is like this:
Saw Big shot on monday, and he was not very pleased to see me so soon again.
I am sure the PA told him that I 'hated' all the products he wanted me to use...Biafine, Loprox shampoo, Periostat 20mg twice a day.
Remember I put myself on Amoxicillin, had started using the Atopiclair again, so when I went there, I had greatly improved. He simply said to continue what I was doing, and was ready to leave the room.
Now wait a minute, I got my dander up...what about this or that.
Soooo,he said I am supposed to use something like Head & shoulders, or Selsun blue, which hopefully won't irritate the Rosacea too much, and on the forehead , eyebrows and hairline Lamisil. He thinks those over the counter athlete foot products are just fine.
He thinks I should drop down to 250mg Amoxil twice a day, and stay on it for 3 month.
He said he had good results with Amoxil too.
I did drop down to 500mg a few days ago, but then I got scared, and went up to a gram again.
So this is what I am doing...Wash with this Nutribiotic liquid soap, alternate every other day with a cold compress of chamomile or comfrey tea and airdry in front of airconditioner, Aloe Vera Gel, then Atopiclair (non steroidal anti-inflammatory) to all areas except SD, Lamisil on hairline and eyebrows, Jojoba oil with tea tree oil to forehead, and plain jojoba oil everywere else.
The whole thing, drying and applying can take up to 2 hours...one stinking pain in the arse...if med help would allow, I would leave a whole paragraph of the most obscene curse words behind, because I am so disgusted with this.
My condition presently is more or less the same as a week ago. Some mornings I look almost clear, and in the afternoon there are spots around my cheeks and eye, or vise versa. I ame sticking with the Amoxil, because I feel I have a chance to lick this. The redness diminished all over, and the rosacea spots are markedly improved and many have gone all together. I am better able to distinguish now were the Rosacea ends, and the SD begins. That is important, because stuff for SD irritates Rosacea, while Rosacea stuff does not irritate SD, just does not help it either.
There are some overlapping areas on my cheeks an around the eyes, so I use Q-tips to put on each spot the appropiate cream, lotion etc.
I go through about 30 Q-tips a day.
No towel, pillowcase,or baby blanket gets used twice, I stick to that religiously, because I think it may help cut down on the yeast and bacteria...remember I have these tiny little pimples that are filled with pus, and I still get about 2-3 styes a week.
I don't know how you do it, but when the bumps and rashes started creeping down my neck, my 'bucket runnet over', and antibiotics seem to be the only choice.
What I am noticing, is, that these little fat balls are decreasing, or at least are getting smaller, and it seems some of that drum tight feeling is leaving also.
Btw, the Amoxil is doing nothing for the SD, and for right now I am at loss as to what to do. Later on this morning I will wash my hair with Head & Shoulders, but I know it will irritate the rosacea, just hope it won't cause an outbrake.
What I consider doing, is going to the haidresser, and have her wash my hair for a few month. With their special sink, none of those shampoos should run into my face. Unfortunately my haidresser is 40 min away, so I have to find one closer to home.
Except for the chocolate, I can't isolate more triggers. I get spots just looking at TV, they come out of the blue, stay around for several hours or days, and leave as they came...just like that. I opend the hot oven door several times yesterday, and the heat caused a full facial flush that lasted for 2-3 hours, but didn't bring on an attack. An attack is only when I brake out into spots.
And eating hot foods brings on flushing also. I sleep strictly with airconditioner on, must be 67 or below, or I wake up with spots.
On monday I make an appointment with another derm.
What I wanted to tell you, I plan on having some spider veins removed this fall (from my legs), so I visited a laser spa, and have 2 more to go to. They also do Rosacea of course, and I am hoping to get an education at the same time.
I am going cross stateline this week, were a Dermatologist is doing the actual evaluation and the procedure as well. He retired from Dermatology and opend a laser practice.
All other places employ a tech, but I really would like to be evaluated by a physician.
My face will have to wait till the inflammation is gone...I am not sure though if that is necessary. Still have lots to read about on this issue, but I have to get ready for a big garage sale first.
I urge you to look into Flax seed oil(Barleans), and Fish oil.
I am back on the regimen I used before tx...2 spoon of flax oil a day, and the days you eat out, take Fish oil capsules along...this way you get your daily supply of Omega 3 fatty acids, which are so beneficial for the skin. Also consider eating coconut.
I am thinking about adding Aloe Vera juice, but that stuff looks so slimy, and I don't drink fruit juices, so I don't know how to get that stuff down.
I am on a very low carbohydrate diet, as it looks like tx left me with pre-diabetes, as well as high Triglycerides.
I like to know every little glory detail as to what is going on with your skin, and what you are doing. I wish you would describe exactly what you see with the SD...I see lots of fine flakes, about 1-3 mm long, general redness, numerous bumps, and generalized ithing... we are talking SD.
I am thinking the tea tree oil may not be good for my SD...preliminary impression.
I think somebody snitched about my copyrighted post, and med help told me they don't have the staff to delete specific posts, so they zapped them all...hmmmm.
I can't write as much as you do...you know that...but I check here every day to see what is cooking with you.
I know it's harder for you to write so don't feel obliged to reply until you feel up to it. As you may have guessed, I can write some of these posts faster than they can be read -- except further up top where you have to very careful with your wording these days :)
I posted to the "Skin Conditions" thread today 7/16. You may or may not want to chime in. But if you do, tell it like it is because I know you've gone through even more **** than I am.
First, I'm uncertain where the seb derm stops and the rosacea starts and vice versa. Of course it might be *layered* in which case there is no stop and start at points. More reason to see a derm who will offer a better diagnosis.
In any event, I have redness on face, forehead, neck shoulders, very upper back and chest down to the breastbone. The neck shoulders and chest itch the worse, probably in part because I wear clothing during the day, even though I try to keep it to a loose cotton or silk shirt. The face used to itch a lot but now limited to part of jawline since I've been taking various medications and eliminating various topicals.
In addition to the redness on face, three weeks ago, I had white flaking (looks like dandruff) on forehead and beard area. That went away after a week with the Elidel and Cetaphil Moisturizing Cream but the forehead flaking started coming back two days ago. I did use some of the Sulfaced on forehead at that time, and maybe it irritated it. I'm also noticing flaking now on the shoulder area.
Within the redness on face, I can differentiate an even redder area on upper cheeks and nose which is def rosacea. The redness on rest of face could also be rosacea or maybe seb derm. I really don't know. I've also noticed the rosacea redness ellipsing to part of my forehead so that might be a roseaa patch. Again don't know. My neck has been red since about the middle of treatment with the exception a three week period near the end of treatment where it went away by itself I think. It also always feels moist and clammy and at times the skin gets very rough and thick looking as if I've aged 15 years. At frist I thought that was it but when it calms down (like with topical sterioids) the roughness goes away. I suppose it's seb derm but it could be rosacea since rosacea can also effect the face, neck, forehead and chest although not as common as just the face. To make things more complicated my original diagnosis was sebopsoriais, so there may also be psoriaisis mixed in.
Current regimen is pretty simple. Wash face, neck, chest in morning with Cetaphil bar soap. Let dry a few minutes. Apply Elidel to face, neck, shoulders, chest. Wait 15 minutes. Then apply Cetaphil Moisturizing Cream which seems to do a decent job of keeping face moisturized without stinging. This is different from the Cetaphil moisturizing lotion which does sting.
At night, shower and then repeat the above. Stopped using the head and shoulders and other shampoos as they sem to irritate both the rosacea and the seb derm or whatever it is I have on shoulders and chest. Lately, on the advice of that internet Dr. who sells stuff, I sometimes alternate the Sufacet lotion (nose and cheeks only) with the Elidel. Elidel still goes on everywhere else except where I use the Sulfacet. Sulfacet seemed to work before and for pimples so don't want to give it up just yet.
This morning my face had the least redness in a long time. As I mentioned it was bright red two days ago. My strong guess is this is because I consciously removed all possible triggers as I explained above. Still itching and irritated elsewhere however like on neck, chest, shoulders. Of course, avoiding all trigers is not only a PITA but results in a major change in lifestyle. Coffee and alcohol I can give up reluctantly but no real big deal. I suppose I can let other hot drinks and hot foods cool down. But not going to the gym and outside is difficult. Like I said I may introduce things one at a time and see what happens but no doubt *heat* is a major problem whether it be from the temperature, working out, food, lights, etd. So down the road, if things don't resolve, I will def look into laser, etc, so I won't have to live literally in the dark to keep the flushing at bay.
I will also ask my next derm about the antibiotics and see what he says.
Currently I'm taking fish oil capsules and Centrum Silver one-a-day vitatmins. I was taking baby aspirin but read that aspirin might be a trigger although I would think the opposiste since it's an anti -inflammatory. I'll research coconut but many of the tropical fruits like mango and pineapple are on the trigger list so I figured coconut might be as well. Anyway, I won't introduce anything new until I clear some more and then start introducing things one at a time. Hopefully, it's just a couple of things causing the flushing but the only way to really tell is to eliminate just about all possible triggers and then add. Or maybe it's a combination. Did you read Nase on this? He list more triggers than they have in the Marines.
We definitely have similar conditions but obviously some differences. When my face gets red the flush doesn't last for a few hours it stays red for days so I'm guessing there's a rosacea overlay over the seb derm but really don't know. Still in the back of my mind is the fact that I've only been off the tx drugs less than six months and that things could start resolving on their own with time. That would be nice.
So. Like I said, today my face actually looks almost a normal color and the only noticeable thing is flaking on forehead which will "disappear" when I put on the Cetaphil Cream Moisturizer. But no gym today, no coffee, no beer, no getting too hot, no florescent lights in gym and my exercise will consist of a 30-40 minute walk around 7-8PM with care taking not to overheat too much. Can't wait for winter when it gets darker earlier but then it will get cold and last winter the cold stung my face. So looks like I'll either have to find a gym without florescent bulbs or buy some exercise equiptment for the house. Or move. Or hopefully it will be better by then.
I had a 24-36 hour intestinal bug, but now feel better.
Tomorrow morning PCR and Fibrosure, and at Quest Cryo.
New ideas zipping through my head...Rosacea & SD.
This thread is already way down, better look for a new one.
I have HCV burnout, can't chime much in at this point.
This is all I want to do for now, a quiet talk about post tx issues, down here.
Continue at "Hep B smoker and drinker" thread on 7/9
This is a serious question but it's bound to sound stupid...what is seb derm? I have this patch by my ear that has been driving me CRAZY since I started treatment and nothing will make it go away (just like those mouth bumps - I have to make an appt with the Ear Nose Throat guy cause they wont go away (my doctors order).
but reading what you posted made me wonder if this IS something that might be treatable on the ear? what are the symptoms?
Can you help Doc Jimbo?
did we loose a thread down here? is tator banned again, caps and all?