Lordwood please read, I have a question for you.

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straydog
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   Posted 9/17/2011 2:37 PM (GMT -6)   
Hello, I saw in your signature line that you have psoriasis induced by Remicade. May I ask how your drs came to this conclusion?

I too have crohns disease and did Remicade infusions for 3 1/2 yrs every 4 weeks.I was dx'd with Lupus induced by the Remicade, as that is something that can happen with the TNF blockers. I am now on Humira shots. Interestingly enough 2 years ago I was dx'd with psoriasis, actually 4 different types going on and it has been terrible trying to get it under control. Mine has not responded to the Humira, as it is used widely for psoriasis.

What type of psoriasis do you have and what kind of treatment are you getting for it?

Take care.
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LordWood
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Date Joined Aug 2011
Total Posts : 59
   Posted 9/18/2011 2:40 AM (GMT -6)   
Hello straydog

I was on remicade for 4 years and I thought it was a miracle drug as it put my crohns basically into remission which was nice as I was all ready more then busy with my RSD throwing everything at me. What started to happen was within the last 2 years I was getting a back-end issue that would start peeling excessively and bleed and weep excessively as well, it was thought that this was either a bacterial or fungal infection and I was tried on a crap load of creams and medications which in the past year it actually cleared up after high doses antibiotics but then this year it returned with a vengeance and started once again peeling large pieces of skin and started bleeding to the point it was going out through my boxers and shorts and would also weep a lot and then cycle to the skin trying to heal and then peel again and then bleed and weep and keep revolving in a never ending cycle which even with high doses antibiotics this time nothing worked to even help it a little and it was getting really bad. Especially as I could not go out as even with attempting to put ladies pads in to try to be a barrier it was still bleeding to much and weeping for even the pads to handle. I was sent to a dermatologist which was not sure exactly what it was and did a biopsy which came back as psoriasis which in rare cases psoriasis can cause bleeding and weeping like mine was even though everyone with psoriasis I knew never bleed or weeped like mine did.

It was found that mine was caused by the remicade because it was the only medication I was on at the time which could cause something like that, as Remicade even though it is used for crohns and RA is also used to treat psoriasis and in rare cases can actually cause psoriasis. My gastro doctor even before I went to the dermatologist had felt it was the remicade causing this and wanted to get a confirmed dx from the dermatologist that it wasn't caused by something else. After the biopsy she agreed it was the remicade. She put me on a cream and after being off the remicade since may 31st and getting this cream august 17th and using it for 2 weeks it cleared up completely. This whole issue started in april and I was doctoring with my regular doctor in the beginning and then after trying a bunch of high dose antibiotics like before and it not working I was referred to a dermatologist. W

hich my insurance only accepted one dermatologist in my area and she had a long waiting list so in between I went to see my gastro he saw this and called the dermatologist and told her this needed to be seen right away and I was in to see her that monday after seeing my gastro on friday (dermatologist wasn't open on the weekend go figure lol). So yeah dealt with that problem from April-August because no one knew what it was at first even after blood work and wound cultures and then the dermatologist not even sure what it was I was starting to get worried what the hell it was. But thankfully the biopsy she did was more specialist of a test then the previous wound culture from my regular doc and confirmed psoriasis and this cream cleared it up in two weeks I just wish I would have had this cream earlier but no one thought it was psoriasis earlier because of how it looked and acted.

They put me on Triamcinolone and I do not know what kind other then mine was not normal whatsoever. Especially for its behavior and location. I was on Humira before but it did not work at all even with methotrexate for my crohns so they had me on remicade and now I can't take that anymore so now I am on Cimzia which idk if its really working as I'm having alot of intestinal pain and it should be working by now. Problem is I'm allergic to most of the crohns medication options so Humira/Remicade/Cimzia are my limited choices and if cimzia doesnt work soon idk what I'm gonna do. Sorry to hear you deal with crohns and psoriasis hope the humira starts working for ya!
I currently take: Cimzia 2-200mg injections, Adderall 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

straydog
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Date Joined Feb 2003
Total Posts : 16796
   Posted 9/18/2011 2:18 PM (GMT -6)   
Hello and thank you so much for responding. I am so glad that the dermatologist saw you as quick as she did, that sure says a lot for her as a dr.. I can relate a lot to what you went through as I went through something very similar for over two years. The psoriasis hit on my feet with vengeance, they were cracked open and bleeding and weeping and full of infection for over two years. My gi and my PCP and several other drs had no clue what it was. My feet would get so bad that standing on them at times was just nearly impossible because of the pain. I would have much rather had it on my feet than where yours was located. I ended up with cellulitis on my legs I have no idea how many times and was also put in the hospital a few times because the cellulitis was so bad.

My daughters dermatologist would not touch me with a 10 foot pole when I went to see him. Those were is words not mine, he said I scared him, lol. He said this because I was already on Humira for crohns and those drugs scare him to death. He did however, get me in to see a dermatologist that he says it the guru of psoriasis. Thats when I learned Humira was used on people with severe psoriasis.

My feet look better now than they have looked in almost 3 years but I have psoriasis on other places besides the feet. I do pretty good on the steroid based ointments but have found an OTC cream steroid free that I have been using. No, its not gone or controlled and I seem to have one outbreak right after another. I have not ever been totally clear in over 3 yrs. I have one spot on my shoulder that does break open and bleed quite often. I get it pretty much starting from my head to my feet.
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LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 9/18/2011 10:15 PM (GMT -6)   
I am sorry to hear you are dealing with these types of issues as well. Have you tried the cream I mentioned though? I am fortunate she saw me as initially she was booked for months so it was going to be a couple months before I could get in which concerned me because of how bad it was but because of the amount of bleeding and how it looked my Gastro doctor called her and told her it was an emergency. I know exactly what you mean by no one knowing what it was, and scary as some thought it resembled jungle rot even though it wasn't fungal. I would have rather had it anywhere but the spot it was as my crohns because of being off the remicade started to wake up and imagine that problem and acidic diarrhea...talk about a nightmare.

But I understand how it was and know yours has got to be painful as well and I hope if you haven't all ready that you can try the cream I mentioned as within two weeks of putting the cream on twice a day it was cleared up. Remicade/Humira/Cimzia are all very dangerous as each can cause not only cancer but lupus like systems and a crap load of other side effects. Whats strange is how each of them can be used for not only crohns and RA but also to treat psoriasis and then in rare cases like us actually cause psoriasis. I wish you the best of luck and hope you can get it under control or cleared up. I know I am crossing my fingers as my Gastro doc is hoping the cimzia does not start my issue back up again. Keep me posted!
I currently take: Cimzia 2-200mg injections, Adderall 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

straydog
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Date Joined Feb 2003
Total Posts : 16796
   Posted 9/20/2011 2:24 PM (GMT -6)   
No, I have not I don't think tried this cream you are talking about. is that the generic of something? I meant to ask that in my above post, lol and forgot. My dermatologist has tried me on so many different ointments they are all thick and greasy and a mess to use, lol. Most of these he uses are over a $1,000 a tube, which is ok since I have an insurance card that will pay for it, but I will be losing it come January. I don't know what I am going to do after January, when they combine our incomes I make too much for any assistance from the drug companies.

Like is aid the steroid creams all work pretty good but they thin the skin something terrible, plus I am 58 yrs old and my skin is already thin because of hormone issues. I use these sparingly for that reason.

Oh man, I cannot imagine what you went thru having the psoriasis in that area, good gawd. I know exactly what you are saying about the acidic poop thing it literally scalds your skin raw, been there & done that more than I want to think about. I usually use A&D diaper rash ointment when I have that going on and it works pretty good.

My family was actually very happy that I had to go off Remicade. My husband talked to a pharmacist and was just beside himself when he found out about the drug. He demanded that I go off of it but I told him it was not his choice or his body, that I had to do what I thought was right for me. I had gone through an emergency resection of the small bowel and had 12 inches cut off, due to an abscess and a complete blockage. I got worse after this surgery and a lot sicker and went straight to Remicade. While it helped somewhat, I never did go into remission. It really did make me sick for about 4 days in bed sick then I would start feeling a little better. I think this is why he got so upset is how sick it made me every month.

Knock on wood, I have done better on Humira than anything. I hope it continues. My gi os totally against Cimzia, says he just does not trust the drug. I tried to get him to let me try it and no way. Let me know if you would on whether this cream is a generic version of something else. Thanks so much. Take care.
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LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 9/21/2011 2:35 AM (GMT -6)   
Well I spoke to soon as my issue is starting to reappear which I was just to see the dermatologist today, initially I thought my skin was just red as from my RSD my skin changes colors all over from purple to white to red. But for where the issue was its red and the skin is raised and looks like it did before it went full blown. So were wondering if the Cimzia is causing this or simply cause I had stopped use of the cream as I was suppose to and its just my problem being stronger then stopping after the two weeks twice a day that I did. For your reference as who knows it might help you a lot the cream she had me on is call Triamcinolone its an ointment and did really well for my issue so hopefully it does the same for you.

This visit shes concerned as its coming back so she wants me to start reusing the Triamcinolone as I did but this time use a ointment called Calcitrene as well. Problem is I have to call her today as the pharmacy called me to tell me right as I got home from her appointment that the Calcitrene is not covered by my insurance and is over $200 something dollars which I cannot afford for a ointment. So we'll have to try something else. She told me shes never treated anyone with my issue like mine while on Cimzia but assures me she is going to work with me to make sure that even if the Cimzia is causing it to get worse again shes going to find the right stuff to prevent it from going full blown again as she knows I have to stay on the Cimzia to keep my crohns under control. Everyone acts like Cimzia is so dangerous but Remicade is more dangerous then either Humira or Cimzia even though all three can create the same problems. Anyway I'm sorry to hear your doctor is against Cimzia which thankfully the Humira is working for you then.

So for you at least try Triamcinolone I bet it would help you. Also if your fortunate enough to have your insurance cover it maybe you could get the Calcitrene. Keep me posted though with how things are going and how you are overall. Wish you the best!!
I currently take: Cimzia 2-200mg injections, Adderall 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 9/21/2011 2:37 AM (GMT -6)   
The Triamcinolone is the generic ointment of Aristocort apparently
I currently take: Cimzia 2-200mg injections, Adderall 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16796
   Posted 9/21/2011 3:46 AM (GMT -6)   
I have heard of this medication cannot remember when though. Oh wow, I am sorry that your area is rearing its ugly head, but I am wondering if perhaps you just stopped using the cream too soon, especially as bad as yours was. Hopefully, you can get this stopped before it gets out of hand again.

I have such a wacked out system especially when it comes to medications and how I react to them, I was not surprised when th Humira did not help. I believe its some where in the 75% range of people it has helped.

When I first started reading your story one of the first things I thought of was a fistula. Have you had the luxury of getting one of those? I have and they are awful.

Thanks again and take care.
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