Author Topic: Permanent Damage  (Read 1767 times)

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Offline Stinkers

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Permanent Damage
« on: October 30, 2016, 07:35:21 AM »
Hi guys,

I was wondering if anyone had any input on withdrawing from Protopic? Like a fool I used it during TSW for a year or two on my face, forearms and groin. I stopped about six months ago and the rest of my body is healed from TSW but where I used Protopic I'm still bright red, sore, oozing etc... I'm genuinely worried I've done permanent damage to my skin as progress has really plateaued.

I'm hoping to hear some success stories from people who used Protopic, stopped using it, had an awful time and on occasions felt like it wouldn't end, but eventually totally healed.

Offline Stinkers

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Re: Permanent Damage
« Reply #1 on: October 31, 2016, 12:38:13 PM »
Perhaps 4 months and then 7 months wasn't sufficient to become addicted? I used it for two years and certainly became as addicted to it as I was to TS. That really isn't what I was asking here.

I want to make it clear that in my personal opinion taking Protopic was one of the worst decisions I have ever made, it really wasn't safe for me to use during withdrawal. Had I seen more anecdotal evidence of addiction cases while researching the drug I never would have used it. I was pressured into using it by my local dermatologists while in hospital with TSW as a political tool to get them to stop aggressively prescribing TS and refusing all other forms of treatment.

You're right TS and Protopic do not work the same. Your study relates to TSW, not to Protopic therefore we cannot use it to conclude that damage done by Protopic is impermanent.

As for RSS - it's easy to tell you're over it as you no longer have symptoms. After two and a quarter years off TS I went from a textbook heavy withdrawal case with four months as an inpatient in hospital  to having more or less clear skin with occasional flare ups.

However, the areas where I put Protopic on still look like they have been bathed in acid and do not seem to be improving. For example, I put PT on exactly 1/4 of the way up my bicep, which was as far as I could go with a shirt / undershirt on. Now there is a perfect straight line cut off on my arm of white clear skin where I could not apply the ointment and inflamed oozing broken red skin where I did. This pattern is evident on all other areas where I used PT (Face, neck and collar to where my t-shirt comes, groin and genitals).

Offline Stinkers

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Re: Permanent Damage
« Reply #2 on: October 31, 2016, 02:56:37 PM »
24 months of use is significantly more than 7 and in my case more than sufficient to induce addiction, more so when you consider the exponential increase in application associated with a reduction in drug efficacy as dependency sets in.

At the base of your post you state you used TS for 40 years. If you are 6 months into withdrawal it is possible you do have Protopic withdrawal symptoms in addition to TSW, you just can't differentiate between the two. This is how I ended up using Protopic for so long - I blamed the PT withdrawal flares on RSS.

Also, I think you have missed the point of this thread. It is not to debate whether or not PT addiction exists or if I have it. It is for those who have been through PT withdrawal to lend their experience, tell their story, support those going through it and share if they have made a full recovery.

If you are unconvinced that Protopic can cause RSS like symptoms I suggest you read other threads in the topical immunosuppressant forum to gain a balanced opinion and start a seperate thread to discuss it.

Offline pfwindsor

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Re: Permanent Damage
« Reply #3 on: October 31, 2016, 03:40:45 PM »
Stinkers,

There are a number of posts that I think do get to the question you are asking.  Have you checked out the thread "Protopic-Is It Worth It??"?  Also,you could enter Protopic in the search bar and find a number of other discussions that you might be interested in. 

Best to you,

Pam
20+ years of TS use; started TSW October 2013

Offline Janna Marie

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Re: Permanent Damage
« Reply #4 on: November 02, 2016, 10:36:14 AM »
This is definitely something I have worried about as well.  I used Protopic very heavily on my face, neck, chest, arms and hands, and behind the knees from ages 12 to 21, stopped using it for 9 months when I quit TS, and then sadly used it again for a year and a half during my TSW.  I too think it was the most horrible decision.  I've been off of it since the end of January 2015 and have hardly made any progress on the areas where I used it.  Like you described, it's almost like there is a clear cut line showing the damaged skin where Protopic was applied, as if I'm burned.  I'm sorry I can't write something of success to encourage you, I would also like to hear some healing stories from Protopic users.  But I still clinging to the hope that if God made our bodies amazing enough to be able to heal the skin from TSA, then they must also be able to overcome the damage from Protopic.  Keep hoping!  It we lose hope, we'll just be depressed, because we surely cannot ever go back to TS or Protopic!  I hope for evidence of improvement for you soon!
 :rainbow2: :rainbow2: :rainbow2:
"For God so loved the world, that He gave His only Son, that whoever believes in Him should not perish but have eternal life."
~John 3:16~

Used moderate to strong TS for 20 years, Protopic 10 years, Prednisone injections and orally, treated for Hodgkins Lymphoma in 2008, off TS since January 2013!

Offline daisy2

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Re: Permanent Damage
« Reply #5 on: November 05, 2016, 04:21:58 PM »
Hi Stinkers,

I worry about this as well.  I am about 8 months in and have achieved significant improvement everywhere except the areas where I used protopic extensively - those are the worst worst worst.  Still red, peeling mess.  look like i am burned a lot, and the skin seems very sensitive to sun, allergens , etc etc.   

My face is the worst and I only used protopic there, with rare exception.  I really wonder if I have somehow damaged  my immune system or  those areas of my skin through using protopic, they are far worse than the areas where i only used TS at this point.

Would love to hear any stories of hope or encouragement as well.

Offline misseztree

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Re: Permanent Damage
« Reply #6 on: November 15, 2016, 01:48:08 AM »
Sadly I'm in this Protopic boat as well. Like someone said before I'm in the long term Protopic use boat and I'm really depressed about the fact that nobody I've come across seems to know if there is even a chance of healing from it. I've read blogs where folks have used it a few years and healed, but nobody with long term use. I often wonder if it's even worth it to try. My face was main PT use, rarely used steroids there. It's my worst area for sure.

Offline Stinkers

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Re: Permanent Damage
« Reply #7 on: May 02, 2017, 09:04:53 AM »
Hi guys,

I thought I'd get back to you with a little positive news. My protopic induced RSS has really turned a corner - quite shockingly in fact!

Basically, all the damage has disappeared on my face, the area I was most worried about. No more redness, no more swelling, no more dead skin, no more embarrassment.

It happened quite shockingly over night, and I woke up one morning and looked in the mirror expecting the usual mess to look back at me, but for the first time in years I was as pale as a ghost and no wrinkles, swelling or damage to the eyes. So even if it comes back again, at least I know we can heal, even from really bad protopic damage to the face.

Also the sudden healing occured right after my protopic anniversary flare ended. I know this isn't the right place to discuss anniversary flares, I'll start a post elsewhere regarding that, but I did think it was relevant.

Kind regards,
Sam

I'm hoping it makes it easier to endure the bad times!

Offline Bkchu

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Re: Permanent Damage
« Reply #8 on: May 23, 2017, 12:15:03 AM »
That's very encouraging! What have you done or been taking? I am so frustrated with my red face and arms.. not to mention the wrinkly hands like a 90 year old woman

Offline Stinkers

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Re: Permanent Damage
« Reply #9 on: May 23, 2017, 04:13:44 AM »
Hi Bkchu,

I'm sorry to hear you're having a tough time and I'm glad I can encourage you a little. I spent almost a year convinced the damage was permanent. I cried and scratched and hated myself for using protopic against my better judgement and yet it is healing and there are days when it looks like I never used it - no more wrinkles or fissures and damage! It's not linear but there is definitely hope.

I would say the most significant discovery for me was Vitamin D. I live in the UK and don't get much exposure to sunlight. I had chronically low Vit D and once I started supplementing in large quantities (3,000 + UI per day) I saw as rapid improvement in my skin.

What I only recently realised is that anti inflammatory chemicals in the body (steroids) need vitamin D to interact with cells - without it it doesnt matter how much cortisone your body is producing, it wont have an effect! Supplementing Vit D allowed my body to utilise it's natural anti inflammatory response.

I have also found supplementing zinc to be extremely effective. Zinc is necessary for cell growth and repair. When I had flare ups I would itch myself quite badly and end up with micro cuts all over my body, as well as fissures. The body can't store zinc so after these flares there was a large demand for zinc (well above the RDA) which wasn't being met by my diet. By supplementing and eating protein rich food I have managed to go from taking 5 days to heal wounds to healing the same damage in about 2 days.

I'd also like to point out that I totally lost my mind because of protopic. I discovered I was hooked about a year and a half into TSW and it devastated me, I have had therapy and spent countless hours screaming and crying, I've tried anti depressants ect... I've been a train wreck. I know a lot of people project positive images online and it can make us feel worse about ourselves as we say things like 'he's coping, why am I not?', and 'he's healing, why can't I, will I ever get better' and I want people to know that I'm not strong or special, I haven't been able to work through these past three years and I've lost everything in my life. We're all in it super bad and we're all going to get better.

Offline Leeboy80

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Re: Permanent Damage
« Reply #10 on: May 23, 2017, 02:48:19 PM »
Stinkers,

You rock, I'm very glad to hear that your face is starting to do better. I swear, any troubles on the face causes x100 depression and anxiety. So if you think you're the only one who lost their mind because of it you're wrong! Hang in there!

When we are healed of this, I swear, it will be impossible for us to have a bad day! We will  literally NEVER be in a bad mood! It's going to be awesome!

Offline Bkchu

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Re: Permanent Damage
« Reply #11 on: May 24, 2017, 03:26:28 AM »
Thanks Stinkers. Let me try to take vitamin D with zinc. What's your dosage?
I have been thinking that the skin on my face and hands are permanently damaged by Protopic.. as other parts of my body have healed nicely long time ago, only my face and hands are still wrinkly. That's the areas where I applied Protopic. Now I have hope because of your experience!

Offline Stinkers

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Re: Permanent Damage
« Reply #12 on: May 24, 2017, 05:32:50 AM »
Hi Bkchu (and Leeboy)

There's definitely hope, it just takes incredibly long to see even the slightest improvement. The skin is still not always clear but I know it can at least turn clear at times, and is doing so more and more often. The recovery times are completely different from TS.

In terms of dose, for Vitamin D I use between 3,000 and 6,000 units sublingually. The upper safe limit I think is around 50,000 units a day - which if you do regularly puts you at risk of hypervitaminosis D so there is a lot of leeway to find a dose for you which is sustainable and makes a difference in the low thousands range. I will post about vitamin D in the general forum as it really is a significant compound. Vitamin D also helps increase serum calcium levels which I think most RSS patients need as we've been exposed to chronic elevated steroid levels for large portions of our lives.

With zinc you have to be a little more careful. Any more than around 40mg/day and you run the risk of under-absorbing copper. I amended the The RDA calculation based on my personal circumstances. The RDA says you should replace what you lose of zinc and no more. They assume the primary channels for Zn loss are saliva, sweat, skin shedding (all negligible) and lost epithelial cells in the intestines. These amount to about 10 milligrams a day.

I personally have been shedding an insane amount of skin - I have a very regular shedding cycle where I lose all the skin on my body every two weeks. In the past this has been closer to 5 to 6 days when bad. The skin contains about 7% of the body's total zinc supply, and there is 2.0 to 3.0g of zinc in the average adult. So, 7% * 2.5g = 175mg / 14 days, or 12.5mg/day. Add this to the normal RDA of 10mg to give you a requirement of 22.5mg per day. Double that of the RDA.

I therefore take between 20 and 30 mg per day depending on where I am in the two week cycle. I've been doing this for a long time now and not noticed any adverse effects so I think dosages at these levels are safe. I take this as an A - Z multivitamin with zinc to get an ionic balance between zinc and other transition metals and a zinc and vitamin C only supplement.

I hope this helps - there are ways of calculating all the different nutritional intakes we require, a lot of which I think are in excess of typical values, because of the stress the body is under, we just have to be careful and smart in how we calculate what we need.

Kind regards,
Stinkers