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Posted 2/13/2010 4:48 PM (GMT 0)
So I am actually a member in the Crohn's disease forum of healingwell. I was given Remicade for my Crohn's disease, (which can also be used to treat psoriasis and arthritis and some others.) Long story short, I developed severe 'drug induced' psoriasis. It started on my hands and feet, speard to my entire body (and I mean my ENTIRE body- in between my toes, fingers, my groin, backs of my knees, eye lids, etc...) and then finally to my scalp. While I have been managing my symptoms with topical steriods and prednisone, I can not seem to get my scalp under control. I have used a scalp steriod oil, as well as dermasmooth, but I am literally losing fistfulls of hair with scales that lifts from my head. I have never experienced any psoriasis in my life before the Remicade brought it on, so I have no idea what to do. Any advice would be welcome. Please and thank you :)

Sam

 

Posted 3/7/2010 3:10 AM (GMT 0)
Hi, sorry about all your going thru. I as well have Crohns, I was put on Humira in May of last year. In Nov. 09 I also developed drug induced Psoriasis from my Humira(byopsy confirmed). I dont know much about your case but mine is called Pustular Psoriasis, I am covered from the top of my head to the bottom of my feet. One Dr made the mistake of putting me on Prednisone to help it, In my case it made it worse after I was done with my dosage( Broke out worse and body swelled up). I have long blonde hair to my waist and lost about half my hair, I was told it will grow back. I was referred to a Rhumy ( they are also auto immune drs.) and he put me on Methotroxate and some medicated lotion In Jan 10. It has calmed down but I still have flares. My Psoriasis come up as body fluid blisters, itch BAD,Fire red, burning, skin drys out, new skin is underneith but in a week or two it starts all over for me. I really feel for you. Having Crohns and dealing with this sucks. I loved taking Humira I felt a world of difference on it, But after this my Gastro pulled me off it. So he (my gastro) is hoping it will just go away. My Ruhmy says not, But should get much better in the summer. He is thinking it will be a winter problem only.. Sorry again, I know this is hard .
Posted 3/8/2010 8:32 PM (GMT 0)
Oh my gosh!!! Thank you!!!! I have not met ANYONE who has any idea what is going on with me!!! This is SUCH A RELIEF! This literally made my day. I have about nine million questions for you, lol, but I will try not bombard you. I am covered from head to toe as well. I had long beautiful hair that I ended up cutting off and donating because the weight and tangles were adding to my hair loss. I have, (in my own self diagnosis) Pustular Psoriasis on my hands and feet, then I have raised red and itchy scales and patches all over everywhere but my face, and huge scales on my head. I NEVER had psoriasis before the remicade. My gastro is hoping it will just 'go away' for me too. BUT he has NO experience with this what so ever, and I was (finally) diagnosed by a derm doctor. I currently on pred, what were your problems with it? How exactly did the byopsy you? Like your skin? Do your docs have any experience with this whatsoever? Do you have any advice on how to talk to my docs to get anywhere? My last infusion was Dec 31 of last year if that helps. Also, did your doctors submit this information to humira? My doctors keep wanting to take pictures of me. I have been advised by SEVERAL people to seek legal consultation, including legal professionals. I am LOST. Thank you SO MUCH for responding to me. I literally thought that I was ALONE.

Sam
Posted 12/27/2012 4:42 PM (GMT 0)
I hope you don't mind me bumping this thread, but I wanted to see if you are still using the forum Sam and if so how things are going for you?

After a year of bad psoriasis (3.5 years on infliximab) I have now lost almost all of my hair.  I stopped infliximab treatment 2 months ago and my hair is starting to recover but the psoriasis is still really bad.  I'm going back to a dermatology consultant in a month's time - I have seen them constantly over the last 6 months and they drew a definite link to the infliximab by numerous scalp and leg biopsies.  I too had never had psoriasis before this.

It would be nice to hear how you are doing now!

Posted 12/27/2012 4:44 PM (GMT 0)
PS I am also a member from the Crohn's forum.
Posted 6/1/2015 4:51 PM (GMT 0)
Hey do any of you guys have a update from this? I have a very similar problem!
Posted 6/1/2015 6:14 PM (GMT 0)
Well I'm a couple of years on... My hair has grown back (I wore a wig for about 18 months which wasn't very nice). I had to go for regular treatment at the dermatologist which was difficult whilst holding down a full time job plus I had to get up very early to do two hours treatment at home on my scalp before work... I also tried a whole host of different treatments for the psoriasis on my body. It's mostly under control now but I do have flare ups - the docs say once the reaction is triggered, you are prone to it for the rest of your life so not much you can do about it!

I came off the infliximab as my GI thought that if I continued my hair follicles might shut down permanently and I'd never grow my hair back. A real pain because it had kept my Crohn's relatively well controlled!

Let me know if I can help you with any more info, it's such a horrible thing to go through.
Posted 2/29/2016 7:11 PM (GMT 0)
I have been on Remicade for 5 years for crohns. My crohns is very well controlled by the Remicade. I developed psoriasis on my hands and feet 7 months ago. Really bad on my feet. Painful to walk. My GI increased the length between doses from 7 to 10 weeks and is going to decrease the dosage from 600 mg down to 400 mg. Has anyone tried decreasing the dosage and time between doses? Did that help?
Posted 3/2/2016 6:59 PM (GMT 0)
Hi Maryanne, I was on Remicade for 3 1/2 yrs, every 4 weeks & cannot recall the dose. Next thing I know I end up with psoriasis on my feet & hands. My feet were a mess, completely raw. Many times over the course of this time i would end up with cellulitis on my legs & put in the hospital for IV antibiotics. At the time no connection was made with it being related to the Remicade. I hated going out in public because of the shape my hands were in, it was embarrassing. I developed antibodies to Remicade & ended with medication induced Lupus. Was switched to Humira & the very same thing happened as did with Remicade. My rheummie was the one that put it all together & at that point I went off of Humira. I still have outbreaks but nothing like what I was going through being on bios. I have crohns & then was also dx'd with UC in 2005. I hope that this new dosing schedule will give you the relief you need. Take care.
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