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Switching to NHS and servere isotretinoin toxic reaction

So I haven't posted in a while. I basically lost hope and stopped bothering as my face was only getting worse.   Turns out I had a very rare reaction to isotretinoin. They only see a handful of cases in the world every year and I was unlucky enough to have it.....  They even asked if i would mind having my photo taken and if i would sign a release form for them. And I ended up in a medical journal, this obviously doesn't make you feel great when a dermatologists wants to take a pic because your case is so bad.  They brought in 5 dermatologists on the ward to take a look and discuss what treatment I should have. Value for money I guess.  

2 biopsy were then taken, one from each cheek to rule out infection or fungal reactions which thankfully returned the all clear.  I had over 10 blood tests for various viruses and infections all on my first appointment to asses what on earth was going on with my face.  I discontinued my isotretinoin and was given dermal lotion to remove the crusts from my face. The dermatologist then gave me a powerful topical steroid to deal with the hyper granulation tissue left. Nightmare doesn't begin to describe the monstrosity that was left on my face.  This is caused by the increased sensitivity of your skin from the medication, large cysts can deteriorate and cause oozing ulcers. 

Here is a photo while i was cleaning it once the lotion had soaked the crusts off. The irony is my face is relatively scar free and acne free (apart from the obvious) so people are often perplexed what I have wrong with me and don't draw acne as the conclusion. These oozed pus due to the large amount of inflammation and chucked out old pus that was simply lying there for months. As the tissue shrank it would uncover more old pus that would surface and discharge. This is the grossest thing I've ever see  had to deal with. Thankfully they responded very well to the topical steroid and flattened out very quickly. The only annoyance was that i had to use special dressings that didn't  stick to the tissue and cost quite a lot of money. Mepliex border dressings are silicone dressings with a foam absorbent pad and when they are £2.50 each I spent and I've worn them for over a month that's more than £150..... Its either tat or rip off your face every day changing dressings.

So all in all, a private derm costing around £1500 to end up in a worse position than when I started 4 months ago. 



 


 

Jacob a

Jacob a

02/12/2017

 

3 and a half months on accutane, This is shit. (graphic you have been warned)

So after my initial progress I have gained no new cysts. Yay. This however has been traded it seems for the most severe cysts I've ever had. The flesh comes to a head and then scabs over and this puffy inflamed flesh is left under which is very sensitive and infected. My dermatologists more than doubled my dose of clindamiycin to 300mg 150mg and 300mg spaced evenly throughout the day. My skin isn't very dry nor are my lips chapped despite being on a 100mg dose. I rarely need to moisturise my face.

I'm trying to be as normal as possible however clubbing has lost all of its fun when people walk up to you and say "hey man what the fuck happened to your face" and then you have to explain to them or worse yet try to prod it, that guy got a slap.... Going out for meals has become my new pastime and I just go to the gym most days. I can sympathise especially with girls how hard it must be for them when they have a lot more beauty standards to live up to. I'm not particularly bothered  as my theory is I can be a miserable ugly person for a year or a happy one and knowing ill be back to myself with a couple big scars that I can say I got in a bar fight. However it does test me on the best of days and occasional I get anxious like any other person with massive pussy crap on their face. 

And the cost, the next appointment cost £179 i had the bloods on the nhs this time and then I had another 2 months of accutane and antibiotics for ..... £429. Yikes. Clindamicyin is expensive.  I had 2 week's of antibiotics dispensed and got pissed about by the gp who ill be writing a complaint about for being blind as he tried to put me on low dose doxycliyclin for a clear abscess infection and even when showed a recent blood test and a letter form a consultant wouldn't prescribe me them. So I had to get the rest privately. To be honest I think its criminal that I haven't been pus been pushed through to a derm on the nhs quicker. Teenage girls with "mental health" issues over a few spots seem to get seen in 2 months yet I get a 6 month wait when I am yet to see someone with it as bad as me ?   My Nhs appointment is on the 11th of January just before my exams.

Current total: £1537..... 

Back to my cysts... My pillow has a sizeable amount  of blood on it most nights as these large scabs just love to crack and move. One came off last night and I'm not sure it it looks better or worse.  without a do here is my beautiful face. 



Apart from this there is no other acne of my body whatsoever. However its a small constellation. I sometimes look at people with pizza faces and am jealous because at least their acne isn't going to scarm like mine but hey.... Ps sorry for not shaving I look like a teenage boy with that shit!

 

Jacob a

Jacob a

12/19/2016

Last Reply:
12/28/2016

 

month 6.5 to 7.5 starting accutane and month progress

I finally visited a private dermatologist. The initial consultation was £200, the blood work was £200 and the medicine was £50. I could have had the blood tests  done on the NHS but I felt like I had waited long enough. At this point I would say my acne was very red and my face was very greasy. The derm prescribed me antibiotics for 2 weeks before starting accutane to prevent a bad initial flare up.
 was then given 40mg a day for a month and told to have another checkup  then. For the first 2 weeks my acne stayed the same and I got the occasional pustule but no cysts. Then my skin dried and my lips began to get chapped. I also noticed i started to get blackheads a little bit more often. 

At this point my acne is exclusively on my cheeks in an area the size of  the bottom of a pint class and very condensed. 

After the month I returned to the derm however I had  forgotten to sort my bloods out so when i visited my gp and it was apparent I wouldn't have time to get them done on the nhs.  I had to pay £329 for the consultation and the bloods. And then a further £150 for the accutane and antibiotics.  At this point I wouldn't say my acne had worsened but the mega cysts I had where now finally coming to a head after months of being on my face. This is easily the worst my acne had looked in terms of severity.  And with my face being virtually totally clear apart from these two areas on my cheeks it made me look like a bit of a clown.  I was given 100mg a day of accutane and 150mgx2 of clindamyicin. 

Being a university student it was hard not to drink, my derm simply said don't get smashed and don't do it often and you will be fine. My close friends were very understanding when i told them the things i could and could not do, even going as far to suggest sober nights out. My rugby team mates weren't as understanding with the typical banter being thrown around. However me being me and also 40mg being a low dose I got paralytic a couple times and my bloods came back fine (Round of applause for my liver) although I'm not so sure about doing that on a 100mg dose. And I haven't drank at all really since. 

I have a derm appointment this weekend and will give details of that and the month following this entry so i shall finally be up to date. 

Total: £929 (could have had about 350 off if i just waited for NHS bloods)
This is me just prior to treatment, sadly I don't really have any more photos apart from recent ones. but i had 2 cysts on the other cheek as well witch where right next to each other,

Jacob a

Jacob a

11/29/2016

 

month 5.5 with pics

A month later, drained cyst had refilled slightly so I ended up taking co amoxalave 302mg x3 a day for 14 days and augmentin 250x3 for 14 days. These antibiotics where pretty strong and so helped clear up the rest of my acne pretty effectively. Although It being a quick fix I was pleased with this. I found a warm compress helped fluid drain internally and much of the inflammation was just fluid and not pus.  all the smaller marks are just red marks and purple marks, not actual acne.



I had decided to go private on dermatology and worked around 80-90 hours a week 70% of that being in a outdoor environment so much of the pictures my skin is very oily however this is actually due to the sun screen i was using which was spf50 and made with oil so it didn't clog my pores. This was great as it also reduced the oil production on my face. However the long periods in the sun cant have helped.  Finally as I got paid I made an appointment with a clinic on Harley street. the main reason for my choice was price and reviews although i knew it was not going to be cheap. 

I was still getting cysts at this point and they where always localised on the middle of my cheeks, no where else it made little sense.  I gained 2 cysts on my left cheek that where close to merging so i was very worried. I should have got a blade and drained them and packed them and used my leftover antibiotics and traded it for a couple scars. As what it turns into 3 months down the line you will have the pleasure of seeing later. 

 

Jacob a

Jacob a

11/22/2016

 

month 4.5 (let the scarring pics begin)

I returned from holiday to have my condition get progressively worse for the next 3 weeks. I had multiple gp visits where I was essentially freaking out. 

My triple cyst had full on ruptured and burst and I could feel it painful and pulsating as if it had a life of its own. It was over an inch wide and 2/3 inch tall and puffy. Now this is where I lost confidence in the Nhs in treatment of non life threatening issues. 

The story;
After my 3rd gp visit I was in despair, they had given me a referral to have the cyst drained as I concluded a battle scar is better than a crater from collagen depletion and scars are easier to treat than fat atrophy.  However after forgetting to send the referral and a 4 week wait i asked again and they apologised and maid an appointment however it was going to be a 3 month wait. WHAT. And what was given to treat me? More low dose lymecycline which is not going to clear a large infection. The nurse and gps I saw  stated that the nhs is currently broken and told me to go private if I wanted a face that was going to be reasonably scar free.
However I had no money at the time from coming back from holiday and being a broke student. They said I should turn up at the hospital and ask to be seen as an emergency, so that is what i did. The surgeon I saw was only a few years older than me and was lovely and did it just as she was finishing work in her own time. (NHS doctors are a credit to the medical profession)  She gave me a large dose of antibiotics of 1.6g of penicillin a day. For 9 days and then a further 14 days of amoxicillin after a gp visit. This is the peak of my acne in terms of intensity. My forehead remains clear. My acne is mainly on the centres of my cheeks.

On the bright side my acne on my forehead is totally gone and only red marks remain, a small victory. However i am concerned with the level of antibiotic use; 4 and a half months on antibiotics coupled with one month prior for my glandular fever means that I've had 5.5 months within the past year. This is above the recommended time and accutane should have been offered. I have a dermatology appointment for January 26 weeks away. With the max waiting time being 18 weeks. (another failure of the overloaded nhs) So an inadequacy in treatment, failure to meet maximum deadlines, incompetence in communication between staff. 


A day after the the drainage.


healed nicely. Lots of fat atrophy. Imagine if i had waited the time they stated. I would have had significantly more scaring.

Jacob a

Jacob a

11/22/2016

 

Month 3 (holiday)(pics)

I went to Thailand for 5 weeks as a reward for my hard work at university and working as a control engineer intern at a local factory. This brought to me a few issues. Sun, alcohol, and food. 

I enjoyed my holiday a lot with lots of drink and other various things. This do doubt put a strain on my system. 

However I love scuba diving and snorkelling and I spent around 50% of my time on the beach playing football (not the american boring version! (ruffle some feathers  ) or swimming or just floating in the water. I'm sure this did my skin looooads of good.  and i say a total reduction in spots on my forehead.  However the cysts where bad and getting worse. Acne conglobata would be the medical term when cysts fuse. I had a triple cyst on my cheek fuse to make a huge one. My diet consisted of mainly pad thai or plain rice and eggs. Id say my veg intake was drastically reduced and this cant have helped .
 
This is at the very start of the holiday,


Mid way, you can see the infection intensifying with the darkening. This is where the antibiotics fail you. They are not meant for large infections like this and will have little to no benefit other than making super bacteria on your face.



This is week 4 the final photo I have. This is not even as bad as it gets it get worse when i arrive home and no longer have the sun to dry off excess sebum and salt water.

Jacob a

Jacob a

11/21/2016

 

Month 2 (pics)

The epiduo at first made my skin very red and painful. My condition worsened at first and then I saw a huge reduction in my small "zits". My face remained slightly oily however. The antibiotics where fine and i had no side effects. The first photo is poor quality however it does show how my cysts are still coming thick and fast despite the reduction in the yellow head spots. its like trading the pus filled nasties for more serious acne that will later look 10 times worse. I finished my summer exams and went on a 5 week holiday to Thailand. with 4 weeks antibiotics.....

Jacob a

Jacob a

11/21/2016

 

the beginning

I'm on month 1.5 of accutane however ill be backtracking with the photos i have to show the extent of my acne and what worked for me. and highlight some issues with the nhs.

This photo if one of the only ones i have and is me in my summer exams revising sending a stupid selfie to my mates. I had just lost a friend in an accident had glandular fever and had my summer exams approaching so it definitely points my condition to have been caused as an response.  

As you can see this is where my acne is just manifesting, I have a lot of closed comedone and oily skin with 1 cyst on my cheek. I went to see my gp after a quick appointment of 2 days and he game me lymecycline 408 mg per day for a month and epiduo which is a topical rentinoid. It is 2.5% benzol peroxide and 0.1% adapalene witch it a retin A compound.
Some general info:  I'm a 6"2 190 pounds who is physically active 8+ times a week and altered my diet as soon as I had this to less meat and more veg intake along with more water. 

Jacob a

Jacob a

11/21/2016

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