Health Boards
Fri-14-09-2012, 18:52 PM
Well Hello There =D
My name is Lauren, I'm 25, and have suffered with severe plaque psoriasis since I was 15.
It started off small - random plaques here and there on my scalp, and then the more that time went by, the more I was noticing the patches spreading to other parts of my body. By 16 I was covered from head to toe in massive plaques. My back was entirely covered, from shoulder blade to shoulder blade and all the way down to just before the small of my back, The entire top of my left arm was another giant plaque, my right elbow and up my arm was another, plaques were spotting my shinns, my face and my ears. I had tried just about every cream/ointment/foam you could think of with little to no relief.
Eventually when I was about 20 or 21 I was out on my own with my own health insurance and I found a dermatologist who said that she'd been in the field for 20+ years and I was one of most severe psoriasis cases she'd ever seen. So she put me on the MTX folic acid cocktail for a while, to no avail.
She then tells me about Enbrel. Tells me all the risks and so forth and so on (if youve ever had a consultation you know the drill) and I REALLY had to sleep on it. Ive never since birth had a good medical history (I.E - I was born with a vascular hemangeoma *benign tumor* about my left eye which is a WHOLE other adventure story, rheumatic fever, lymes disease, quarantined in the hospital for 10 days with meningitis - you name it, i've probably had it) so needless to say I was terrified assuming that with my luck, something that could potentially kill me would probably do just that.
But something snapped in my head and I decided that I was tired of wearing long sleeves and jeans in the summer time. It had, at that point been about 7 or 8 years since I had gone out in public in anything less. After talking with my family and friends I decided to go for it.
And was it ever worth it!!
within 3 months I was 80% spot free - clear beautiful skin. And what a better time to get it but the break of summer! I remember I went out and bought myself a little spaghetti strap dress and went out to the store with my then boyfriend. Once we parked, I froze and couldnt get out of the car. Terrified of getting out of the car, because i felt naked in this little dress when I hadnt worn less than long sleeves and jeans in almost a decade. I started BAWLING realizing what I was about to do. After I composed myself, I got out of the car, shaking and afraid that everyone around me still saw what my skin had previously been. I had never felt SO good in my life. It was such an amazing feeling to feel..pretty for once in my life.
Then moral of that story is I lost my job and insurance followed by losing the Enbrel. My skin stayed clear fooorrr, probably close to a year, before I started seeing anymore signs of it. I had just gotten a new boyfriend (Kurt for future reference, since im still with him haha) and been dating a few months before I started to break down again. I COULDNT have this again, this COULDNT have come at a worse time..Finally Im happy with my life. My skin has been clear, no major medical issues, and just met this AMAZING guy...who knows nothing of what this has the potential of turning into.
Long story short here - I go to the dermo and have them put me back on Enbrel. I had been taking my injections 2x a week for roughly a month and then there it was. Double Vision. Id had bouts of it many times in the past but was usually accompanied by bells palsy - it was strange but Id always ignored it, it went away on its own within a few days. Id been to the ER and the DR before and they"d done MRIs but never came up with anything. Most assumed that it was somehow connected to the vascular hemangeoma - though the mass is above the skull (making an outward appearing bump above my left eye). So I have this double vision and Kurt is concerned and wants me to see a DR and I assure him that it happens all the time and will just go away- and like a good boyfriend, he wasnt okay with that. He gave it 2 days after I told him about it (it had been going on for about 4 before I told him), and I was at work and almost fainted and could barely pick up my pocketbook, my muscles were extremely weak. I called him and he rushed me to the ER and we were there from 10am until 1am, and after 2 CT scans and 2 MRIs they came to the conclusion that quickly became the end all to my skin miracle.
.Multiple Sclerosis.
It sort of felt and still sort of does feel, like I have been dealt some of THEE crappiest health cards in the deck. I know it could be much worse, and Im certainly not looking for sympathy, but....REALLY?!? lol I mean, look at the things/diseases Ive had and still have in my life, and you wanna add THAT crap shoot on top of my crap cake?!? haha.
*side note that I still do not carry a commercial insurance plan, I am however covered by Medicaid*
So now Its been 15 months since I've been diagnosed with MS and have had to stop taking my injections. I kind of came to the conclusion that Id rather treat the MS so my odds are better for this to not disable me, than to keep taking the shots and take a different route to try to keep this under control. So needless to say my skin is...I dont want to say WORSE than it was before I very first went on enbrel. It was VERY tough having giant plaques all over my body...but they were easier to target and attempt to 'treat'. Now Ive got psoriasis in places Ive never had it before and in a different way. Instead of a few LARGE patches, I have a pant load of SMALL lesions spotting my entire body. And the itch is MUCH more intense than it has ever been.
Even ATTEMPTING to treat with creams and things of that nature are tedious, time consuming, messy, smelly, I'm exposing NOT damaged skin to the steroids and/or whatever else is in them, i'm staining clothes/sheets and its just an overall NOT great way to do it.
Unfortunately due to the medication I take for the MS the options for skin treatment are limited (the MS med I take is called gilenya and my neurologist actually told me that gilenya attacks the immune system in a similar fashion to biologics and may eventually end up helping the psoriasis though there is no scientific proof to that theory).
So after reading THAT ^ novel, what do you think? lol What would YOU do? are you or do you know someone else suffering from both psoriasis AND MS?
Sorry this was so long, its just a rare occasion that I can freely express my story/concerns/questions to people who can relate. Any input is appreciated!
-Lauren
(This post will eventually be followed with pictures/video links of part of my journey on Enbrel)
My name is Lauren, I'm 25, and have suffered with severe plaque psoriasis since I was 15.
It started off small - random plaques here and there on my scalp, and then the more that time went by, the more I was noticing the patches spreading to other parts of my body. By 16 I was covered from head to toe in massive plaques. My back was entirely covered, from shoulder blade to shoulder blade and all the way down to just before the small of my back, The entire top of my left arm was another giant plaque, my right elbow and up my arm was another, plaques were spotting my shinns, my face and my ears. I had tried just about every cream/ointment/foam you could think of with little to no relief.
Eventually when I was about 20 or 21 I was out on my own with my own health insurance and I found a dermatologist who said that she'd been in the field for 20+ years and I was one of most severe psoriasis cases she'd ever seen. So she put me on the MTX folic acid cocktail for a while, to no avail.
She then tells me about Enbrel. Tells me all the risks and so forth and so on (if youve ever had a consultation you know the drill) and I REALLY had to sleep on it. Ive never since birth had a good medical history (I.E - I was born with a vascular hemangeoma *benign tumor* about my left eye which is a WHOLE other adventure story, rheumatic fever, lymes disease, quarantined in the hospital for 10 days with meningitis - you name it, i've probably had it) so needless to say I was terrified assuming that with my luck, something that could potentially kill me would probably do just that.
But something snapped in my head and I decided that I was tired of wearing long sleeves and jeans in the summer time. It had, at that point been about 7 or 8 years since I had gone out in public in anything less. After talking with my family and friends I decided to go for it.
And was it ever worth it!!
within 3 months I was 80% spot free - clear beautiful skin. And what a better time to get it but the break of summer! I remember I went out and bought myself a little spaghetti strap dress and went out to the store with my then boyfriend. Once we parked, I froze and couldnt get out of the car. Terrified of getting out of the car, because i felt naked in this little dress when I hadnt worn less than long sleeves and jeans in almost a decade. I started BAWLING realizing what I was about to do. After I composed myself, I got out of the car, shaking and afraid that everyone around me still saw what my skin had previously been. I had never felt SO good in my life. It was such an amazing feeling to feel..pretty for once in my life.
Then moral of that story is I lost my job and insurance followed by losing the Enbrel. My skin stayed clear fooorrr, probably close to a year, before I started seeing anymore signs of it. I had just gotten a new boyfriend (Kurt for future reference, since im still with him haha) and been dating a few months before I started to break down again. I COULDNT have this again, this COULDNT have come at a worse time..Finally Im happy with my life. My skin has been clear, no major medical issues, and just met this AMAZING guy...who knows nothing of what this has the potential of turning into.
Long story short here - I go to the dermo and have them put me back on Enbrel. I had been taking my injections 2x a week for roughly a month and then there it was. Double Vision. Id had bouts of it many times in the past but was usually accompanied by bells palsy - it was strange but Id always ignored it, it went away on its own within a few days. Id been to the ER and the DR before and they"d done MRIs but never came up with anything. Most assumed that it was somehow connected to the vascular hemangeoma - though the mass is above the skull (making an outward appearing bump above my left eye). So I have this double vision and Kurt is concerned and wants me to see a DR and I assure him that it happens all the time and will just go away- and like a good boyfriend, he wasnt okay with that. He gave it 2 days after I told him about it (it had been going on for about 4 before I told him), and I was at work and almost fainted and could barely pick up my pocketbook, my muscles were extremely weak. I called him and he rushed me to the ER and we were there from 10am until 1am, and after 2 CT scans and 2 MRIs they came to the conclusion that quickly became the end all to my skin miracle.
.Multiple Sclerosis.
It sort of felt and still sort of does feel, like I have been dealt some of THEE crappiest health cards in the deck. I know it could be much worse, and Im certainly not looking for sympathy, but....REALLY?!? lol I mean, look at the things/diseases Ive had and still have in my life, and you wanna add THAT crap shoot on top of my crap cake?!? haha.
*side note that I still do not carry a commercial insurance plan, I am however covered by Medicaid*
So now Its been 15 months since I've been diagnosed with MS and have had to stop taking my injections. I kind of came to the conclusion that Id rather treat the MS so my odds are better for this to not disable me, than to keep taking the shots and take a different route to try to keep this under control. So needless to say my skin is...I dont want to say WORSE than it was before I very first went on enbrel. It was VERY tough having giant plaques all over my body...but they were easier to target and attempt to 'treat'. Now Ive got psoriasis in places Ive never had it before and in a different way. Instead of a few LARGE patches, I have a pant load of SMALL lesions spotting my entire body. And the itch is MUCH more intense than it has ever been.
Even ATTEMPTING to treat with creams and things of that nature are tedious, time consuming, messy, smelly, I'm exposing NOT damaged skin to the steroids and/or whatever else is in them, i'm staining clothes/sheets and its just an overall NOT great way to do it.
Unfortunately due to the medication I take for the MS the options for skin treatment are limited (the MS med I take is called gilenya and my neurologist actually told me that gilenya attacks the immune system in a similar fashion to biologics and may eventually end up helping the psoriasis though there is no scientific proof to that theory).
So after reading THAT ^ novel, what do you think? lol What would YOU do? are you or do you know someone else suffering from both psoriasis AND MS?
Sorry this was so long, its just a rare occasion that I can freely express my story/concerns/questions to people who can relate. Any input is appreciated!
-Lauren
(This post will eventually be followed with pictures/video links of part of my journey on Enbrel)
to Psoriasis Club.
