Psoriasis
Hi,
I have psoriasis over 90% of my body. I am getting my first shot of Stelara tomorrow 1/4/10. I have tried Enbrel and it only worked for about 3 weeks. I tried Humeria(sp)? and after the 2nd shot went totally blind for about 1 minute twice during a given week. My doctor called the company and they told him that I was a 1/2 a person in 100,000 that that could happen to and my Dr. wanted me to take the third shot, but I refused. I was fortunate to be at home when I went blind both times. I can't imagine going blind while driving the car. I have also been on Remicade, cyclosporin, methotrexate, and Soriatane, nothing helped.
I have tried going the homeopathic way. It did work after having psoriasis for 15 years. That Dr. actually had me clear except for a couple of spots. After being cleared for 5 months, I had a hot water heater fall on me in a store. ( At this same time, I was caring for my mom in my home and she was 93 years old.) Within 2 weeks, the psoriasis started on my legs and spread quickly. I then tried accupuncture with a Chinese doctor and that did not give me any relief. My skin itches, burns and hurts day and night. Stelara is my only hope at this point.
Jane
I have psoriasis over 90% of my body. I am getting my first shot of Stelara tomorrow 1/4/10. I have tried Enbrel and it only worked for about 3 weeks. I tried Humeria(sp)? and after the 2nd shot went totally blind for about 1 minute twice during a given week. My doctor called the company and they told him that I was a 1/2 a person in 100,000 that that could happen to and my Dr. wanted me to take the third shot, but I refused. I was fortunate to be at home when I went blind both times. I can't imagine going blind while driving the car. I have also been on Remicade, cyclosporin, methotrexate, and Soriatane, nothing helped.
I have tried going the homeopathic way. It did work after having psoriasis for 15 years. That Dr. actually had me clear except for a couple of spots. After being cleared for 5 months, I had a hot water heater fall on me in a store. ( At this same time, I was caring for my mom in my home and she was 93 years old.) Within 2 weeks, the psoriasis started on my legs and spread quickly. I then tried accupuncture with a Chinese doctor and that did not give me any relief. My skin itches, burns and hurts day and night. Stelara is my only hope at this point.
Jane
Views: 41
Replies to This Discussion
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Permalink Reply by Arlene Vickrey on -
I hope the Stelara works for you. I am having the same problem and am reaching the 90% point so I know exactly how you feel. I don't think that most people realize just how much the P can hurt.
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Permalink Reply by Leigh Hicks on -
Hi, Jane - I'm sorry to hear you are having such a hard time. Let us know how the Stelara goes for you. What you said about Humira is a bit worrying to me! Can you let me know what homeopathic things were working for you back in the day? I'd appreciate it.
And Arlene is right - people don't get how much it hurts sometimes. Just plain hurts.
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Permalink Reply by Jane Nastasi on
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Hi Arlene,
I had the first shot of Stelara last Monday. Yesterday, I actually could see the psoriasis starting to disappear. The itching is minimal and I don't hurt anymore. What are you taking for your psoriasis? Jane
Arlene Vickrey said:I hope the Stelara works for you. I am having the same problem and am reaching the 90% point so I know exactly how you feel. I don't think that most people realize just how much the P can hurt.
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Permalink Reply by Jane Nastasi on
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Hi Leigh,
I had my first shot of Stelara last Monday. Yesterday, I could see the psoriasis starting to disappear. The itching is minimal and I don't hurt anymore. I was on a lot of homeopatic elements when the psoriasis went away the last time. I really can't recall the exact elements, but if you go to a homeopathic doctor, each person would be treated differently. Please don't get overly concerned with the experience that I had with Humira. Again, I was a 1/2 a person in a hundred thousand that would experience that side effect. If it is working for, think positive and go with it. Jane
Leigh Hicks said:Hi, Jane - I'm sorry to hear you are having such a hard time. Let us know how the Stelara goes for you. What you said about Humira is a bit worrying to me! Can you let me know what homeopathic things were working for you back in the day? I'd appreciate it.
And Arlene is right - people don't get how much it hurts sometimes. Just plain hurts.
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Permalink Reply by Ryan Lohmann on
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Hello,
I was wondering if you could tell me how you went about getting this. My derm wrote me a percription for it and my insurance came back with a very high copay (4329) for a 29 day supply. My derm was unaware it had to be done in the office. Should this lower my copay? How long should I plan on waiting to see if I can get it or not?
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Permalink Reply by Leigh Hicks on
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Hi, Ryan,
I don't have a lot of information for you other than to just fight the insurance company. Sometimes the manufacturers will make it available at a lower price, too -you would need to contact them - but I think that's pretty rare. I am lucky enough to have Kaiser cover the cost of my Humira except for my co-pay, which is managable. I pay a small fortune for Kaiser, though, every month. Good luck!
Ryan Lohmann said:Hello,
I was wondering if you could tell me how you went about getting this. My derm wrote me a percription for it and my insurance came back with a very high copay (4329) for a 29 day supply. My derm was unaware it had to be done in the office. Should this lower my copay? How long should I plan on waiting to see if I can get it or not?
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Permalink Reply by Jane Nastasi on
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Hi Ryan,
Find a new derm. Jane
Ryan Lohmann said:Hello,
I was wondering if you could tell me how you went about getting this. My derm wrote me a percription for it and my insurance came back with a very high copay (4329) for a 29 day supply. My derm was unaware it had to be done in the office. Should this lower my copay? How long should I plan on waiting to see if I can get it or not?
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Permalink Reply by Jane Nastasi on
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It is difficult to remember exactly which homeopathics were working because every person is different. If you have a homeopathic doc, then they should be able to test you to see what works for you. Jane
Leigh Hicks said:Hi, Jane - I'm sorry to hear you are having such a hard time. Let us know how the Stelara goes for you. What you said about Humira is a bit worrying to me! Can you let me know what homeopathic things were working for you back in the day? I'd appreciate it.
And Arlene is right - people don't get how much it hurts sometimes. Just plain hurts.
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Permalink Reply by Melissa Denise on -
"Ryan", you definately need a new derm!
They should know how to administor the drug.
Ryan Lohmann said:Hello,
I was wondering if you could tell me how you went about getting this. My derm wrote me a percription for it and my insurance came back with a very high copay (4329) for a 29 day supply. My derm was unaware it had to be done in the office. Should this lower my copay? How long should I plan on waiting to see if I can get it or not?
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Permalink Reply by Ken Connolly on
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I have been part of the clinical studies for Stelara for over 4 years now.....When I first started the study I had pssorisis on over 85% .....After about 3 months I was totally clear of it!!!! I have remained that way ever since. Stelara may not be right for everyone but it sure worked wonders for me!!!!!
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Permalink Reply by Bill Ritter on
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Hi Jane,
I just wanted to let you know you have a fellow spirit here. I too was on the Enbrel for about a year. It worked great for me, but another infection caused me to stop and it came back in spades. When I got back on it after about three months, it worked for about three months more and then stopped.
Since then I have been doing home remedies but mostly lots and lots of baby oil and seculsion therapy with vinyl gloves, plastic wrap and such. Tomorrow, (7/22/10) I am going for my first shot of Stelara. Since the lesser biologic Enbrel worked for a short time with me also, I am praying for all of us that the Stelara will be better since it targets specific protiens. It seems a better shot since they are zeroing in on the causes.
If this doesnt work for me, my doctor told me the only shot for me is to either enter into university studies and be a guinea pig or to find something that "works for me" on my own.
90% covered for 35 years but still kicking! Wish me luck as I wish you! Keep me posted how you are doing!
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Permalink Reply by Bill Ritter on
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I totally agree. My derm was very informative and told me the injection schedule before we even tried with the insurance company. Also the insurance company are the ones that set the payments, but your doctor should also have contacted the drug manufacturer to see if they could intervene on your behalf.
The Enbrel I was taking before, I was told out of pocket would have been over twenty grand without insurance. With insurance and intervention of the drug company, my monthly copay was fourty dollars per month. Big, BIG, HUGE difference than over a grand a month if I do say so.
Check for a better derm even if it is farther away. Sometimes farther is a good thing with doctors. We have a lot of "country' doctors in this area, and I dont pay in chickens, lol!
Melissa Denise said:"Ryan", you definately need a new derm!
They should know how to administor the drug.
Ryan Lohmann said:Hello,
I was wondering if you could tell me how you went about getting this. My derm wrote me a percription for it and my insurance came back with a very high copay (4329) for a 29 day supply. My derm was unaware it had to be done in the office. Should this lower my copay? How long should I plan on waiting to see if I can get it or not?
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