post tx. sunburn and psoriasis. how long?

[bobbyullc]

i am 10 days over tx. and i felt good in only a few days but i have bad psoriasis and sun sensitivity. if i go out in the shade for 20 minutes i get a rash that bleeds and my eyeslyds swell shut from the sun. i wear 35 sunblock and a hat but it kills me. anyone know how long this will last. the normal drugs for psoriasis do not even touch it and it itches real bad.  none of this even happened untill the last month of tx.
thanks,bobby

[susan400]

Bobby, I'd give it awhile longer.  These drugs take a while to get out of our system.  Wait until 6 weeks has past and give it another try, maybe by then, you will be able to tolerate it better.

Susan

[jmjm530]

FL says: all side effects explained in extreme detail'. I don't know who he explained them to, but it wasn't me.
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LOL. That is priceless but so true. Frankly, it wouldn't have made any difference to me, because I waited until the 11th hour to treat. However, I waited until the 11th hour because I happened to be aware of the "side effects" :) Unfortuantly, not everyone is.

The other half of the equation is the lack of follow-up by doctors once you SVR. To them, you're "cured". To the patient YMMV :)

-- Jim

[52TELE]

Good God dont go out there!!!

[bobbyullc]

i finished tx 8 days now but have had this for two months. i never had it early in tx and not before at all. my dr. says the peg effects our immune system taking the protection out but does not know how long.

jmjm i was told before i had mild resacea but never this other stuff. i will try remidies. thanks.

bobby

[NYgirl]

Sorry for cutting in but I was wondering what happened with her doctor?  I hope to God she called him and reminded him that he works for HER and she PAID for the test results and she deserved to get them!!!!!!!

OHHhhh that made me so MAD!

[sfbaygirl]

I haven't seen her since yesterday when all of our overlapping posts told her about creating threads etc. Hope we didn't scare her off!

Have you noticed how many threads we got yesterday? I think it was like 20! Man, that is hard to keep up with!

I am really inspired by your cleaning drawers etc. I have to hit my closets Thurs. We are having new carpets put in which means EVERYTHING has to be off of the floors. This house is 4,000+ sq.ft. what a job! The closet is going to be the worst. Forced cleaning...tell you what, I sure wouldn't be doing it (although I am hiring some kids to pack LOL) if I didn't have to.  

Thank goodness my horrible achy hair, body and fingers are gone today. Now I get to do my shot tonight! Tomorrow should be fine though. Usually I feel like **** on Friday or Saturday.

Sure wish I could mark my calendar for those dang sx!

[Mister beagle bailey]

Bobby I feel for you and can't believe how bad you have it.  I do remember at the reunion we had last Sept., that I noticed how red you were and you didn't start tx yet.  Could it have started before starting tx?

Bob

[sfbaygirl]

Sorry to hear your QOL is worse now than before tx. That is scary to me. I wish I had had a BX before tx so I knew if I had time to wait. These sx are awful.

I had lichen plantus and some other weird skin disorder b/f tx that drove me crazy, Derm NP could not figure it out. It was like ingrown hair. It has cleared with tx, thank goodness. Now I seem to be getting freckles! Never had them before. I spent a few minutes in the sun the other day to test out my sensitivity, but no problems so far.

The bone and joint pain scares me the most. Do you have anything like this?  How is your energy?

Someone said it takes a year to rid our system of the Riba. I hope I have NO semblence of sx like I have now after treatment. QOL is more important than anything.

[FlGuy]

I picked up the files from tx doc a couple of weeks ago to bring to the new doc.  There were handwritten comments dated a week before week #1 which said 'all side effects explained in extreme detail'.  I don't know who he explained them to, but it wasn't me.  In the end, it didn't make a difference because I was going to tx no matter what he said. For a gastro - he's got a lot of gall.

[jmjm530]

Sorry about your bone and joint pains. Are you taking Procrit? Maybe it's as simple as that, and will go away as soon as you're off the drugs.

For me, thankfully no bone and joint problems either during treatment or after -- although Double Dose and others have reported those issues post treatment.

My "physical" energy level is maybe 80%-90% of pre-treatment which is fine considering I'm still withdrawing from the drugs. Mentally, it's a bit of a haze with some cognitive problems such as short-term memory problems including word recall. Physically, again it's a host of skin issues which were perhaps less troublesome when housebound, but more troubling in the real world where it's significantly limiting my activities (especially sports) which have been a big part of my life.

Besides staying out of the sun and/or wearing sun protective clothing, you might try Blue Lizard BAY Sun Block. Gentle to the skin and a physical block using zinc oxide and titanium dioxide. You might mix it with a little toner unless you like the albino look :)

-- Jim

[jmjm530]

At 14 weeks post treatment I still have sebopsoriasis (psoriasis and seborreah dermatitis) and rosacea. Like yourself, extreme sun sensitivity on face, neck and chest. Sunblocks only help marginally. From what you describe , you may also have ocular rosacea as well, and best to see a dermatologist before trying stuff in your medicine cabinet. What works for psoriasis may flare rosacea, etc. To cut down the inflammation I was told to use Cetaphil facial cleanser instead of soap, and preferably without water. The best and least irritating sun block I've found is Blue Lizard BABY formulation. Just Zinc Oxide and Titanium Dioxide, no chemicals.

Among others, two members -- Eisbein and Double Dose -- have also had post treatment sun issues, maybe they will see your post and add some advice.

-- Jim

[jmjm530]

Reminds me of the ole' medical joke..."the patient died but the operation was a success" :)

[sfbaygirl]

I just requested my med records from physical in Dec. To look at it you would think I am the picture of health! He wrote NO headaches - My GOD I have had the worst migraines in my life I have heard anyone have.

My shrink had a good suggestion. He told me to correct any mistakes on the records and send them to the doc. He said it will protect him and you (you don't want to look like a liar!) I thought this was a good idea, so I plan on sending a letter with the corrections to his assessment.

[jmjm530]

I had very mild and limited psoriasis prior to treatment. Hardly any seb dermatitis and maybe stage 0-1 rosacea. Treatment flared all three skin problems and they continue 14 weeks post treatment much worse than I've ever had them pre-treatment. All the literature (and my derms) suggest inteferon, as these skin conditions are all related to a normally working immune system. High does of inteferon for long periods of time are very unatural and can play havoc with the immune system. So, yes, I had these conditions pre-existing, but what treatment did is to make them much worse. I think that's why many report feeling ten years older after treating -- perhaps we are as the immune system had to work overtime. You can google any of these skin conditions and "interferon" and come up with reports and studies. These are serious drugs with consequences and that's why it's so important to take the effects of the treatment drugs into consideration when making a treat or not to treat decision.

[jmjm530]

Put it this way, my QOL is significantly worse after treatment than before, and it's still only speculation that my life expectancy is any better. Hopefully, time will heal, but some like DoubleDose talk about skin and joint problems continuing for years. Anyone with psoriasis, or any other immune condition, should think twice -- make that three times -- before treating with interferon and carefully weigh thre risks versus the rewards. Looking back, as a stage 3 (three years ago) I think I made the correct decision, but if the skin problems continue or worsen, I may revise that opinion.
A lot of talk here about belittling the significance of no or minimal liver damage, when folks like myself suggest a watch and wait approach. That is not my message at all. What I'm saying is there's another side to the equation and that is the risks of the treatment drugs themselves. I think it's the dirty little secret that is never really explained to most folks when they walk into their doctor's office for the first time.

-- Jim

[jmjm530]

Kalio says: I think this board is a fairly good representative sample and of all those who report back it is a very small portion of people who end up with post tx situations, it seems to back up the stats the docs use.
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5%? 10%? 20%? I really don't know, do you?

I think it's somewhat obvious, that how many of us look at treatment is at least partly based on our individual treatment experience. In general, those that sail through with no after effects tend to post how "doable" treatment is and often point out the "rewards". And those, with a lot of problems (like myself) often point out how difficult it can be and therefore often point out the "risks".

The problem is that no one knows which group they will fall into before they start treating. That's all I'm saying, let people know the risks as well as the rewards.

As far as me being SVR and not damaging my liver at all, yes, that is why I treated. But there's more to your body (and life) than just your liver.

I wonder if you would have the same point of view if you went through my treatment experience and experienced what I am right now. I'll concede the converse is also true.

-- Jim

[FlGuy]

protecting the doc...Although I don't blame the doc for my relapse, I do think that had we been a little more aggressive with the riba dosing I might not be where I am today. If I had been more knowledgeable (Jim's reference to 11th hour start) I would have pressed more and, if necessary, would have acknowledged that I would have accepted risks beyond the 'cookie cutter' approach. Live and learn.  As Jim points out tx was a success, the virus died but not dead enough.

[FlGuy]

I agree with you. The one small bit of info I had was stay compliant and have an 83% chance - I thought it was a lock.  A couple of months into tx is when I began to wonder.  And I don't blame the doc at all.  In life you get the opportunity to have 'do overs', in all sorts of things.  The disappointing thing, that you know well, is that you basically go back to square one with hcv.  It's not like missing a dirty spot on an otherwise clean car.  It's the thing I like about this place.  Sometime, for someone, a new person will learn from us and avoid what we learned the hard way.  On a more pleasant note, six months ago I would not have remembered that Magnum lived in Las Vegas.

[sfbaygirl]

When I first got my Script for the meds the dr. had me at 180 and 1200 Riba a day. Once the meds came in the mail, they said to squirt out the pegasas to 135 and to take 1000 Riba. I called the Dr. and said I don't want to waste the Interferon. He said, "do it, if you can handle it." When I mention the Riba and my weight he said he thought I was heavier than I am. Thanks! Of course this is the guy who forgot I was on tx twice already!

I have been doing the 180 Interferon, of course as you probably know I feel like **** most of the time, but I am sticking to it.

I know you two have to be strong willed to talk about doing this (and doing it!) all over again. Looking at 40 more weeks for me, I am not sure I could do it all over again. I hope I will be able to, if necessary. I wish I knew my BX, cuz' what Jim says makes a lot of sence. If I am Stage 2 I would wait, if I had to re-tx.

[bobbyullc]

i am off tx for 8 days and feel great but can NOT go out in the sun. if i wear shorts in the house i get a rash from the sun comming in the windows. my dr. says it is the sun and to wear long sleeve sunproof shirts and sunblock and to even stay away from floresant lights?  i was always in the sun before with no problems and hate to blow the summer in the house. i just want to know if this is going to last for days or months or GOD forbid never go away? i mean this is bad sores and all.

thanks to all
bobby