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jade301 08-30-2012 08:30 PM

Biologic Question Any help is appreciated
 
I have had psoriasis (75% coverage) and PsA since the age of 15 (17yrs now). I have used many treatments, everything from steroids, topical steroids, light therapy, laser therapy, oral medications(accutane), and biologics, I first used Enbrel for 5 years, Remicade for almost 6, lastly Humira for 4 months. Out of all of these the Remicade was the most effective with the least amount of side effects for the most of the 6 years. The only reason I stopped was the efficacy of the Remicade started to go downhill. I was only getting 4 weeks of relief with infusions every 6 weeks. We tried changing the dose and dosing schedule, but when we did that I started having more side effects from the drug. I had increased itching and almost a lupus like effect from the increased dose so after talks with my Rhuem and GI doc we decided to switch to Humira.
Things started to get really bad toward the end of Remicade and the start of Humira. I ended up in the ER 6 times with 2 hospital stays. I had a wide array of symptoms; I was sweating buckets but cold, more tired than normal (I would fall asleep eating sometimes), I was also very emotional/teary, my blood pressure was all over the charts very high(210/120) or very low(70/40) I have never had problems with my blood pressure before, I was unable to get comfortable no matter what i tired, my skin would get flushed/red, I was constantly nauseous with bouts of vomiting and most times unable to eat or even drink. Also when I had these episodes I would end up with red inflamed joints at the end of the day, I was having a lupus like reaction with the Humira as well. I would try to put up with this as long as I could but I would eventually end up in the hospital dehydrated. I have been through almost every test in the book and have no answers. I have also seen many specialists. All of my inside structures/organs appear normal so the doctors are having a hard time coming up with a reason.
I started slowly been cutting medicines out of my life to see if maybe one of them was the culprit, the only ones I didnt stop were my pain management meds and the Humira. After the most recent stay at the hospital I took a chance and stopped the Humira and havent had any episodes since then.
The list of biologics for psoriasis/PsA is a pretty short list and I have tried most of them. I feel like my only options right now are to go back to the dose of Remicade that didnt have adverse effects, go without until something new comes out, or try Stelara. Stelara seems like the best fit for me out of the ones to try that help both diseases, plus it is not a TNF inhibitor so it might cut back on the side effects/symptoms I was having daily.
I was wondering if anyone has similar effects with the TNF inhibitors(Enbrel, Remicade, Humira) if so was there something else you tried with success? Was there a compliment medicine that helped cut back on the side effects like methotrexate or a course of prendisone.
I was also wondering if anyone had any experience with Stelara, If so, were there any side effects or uncomfortable effects?
Sorry this is so long, I feel like the background info is important as someone might be able to relate. I feel like I am at a loss for what to do next, so any help is greatly appreciated.

SarahKJ 12-07-2012 03:02 AM

Re: Biologic Question Any help is appreciated
 
At 17 you have used almost all in the list of biologics? These affects your immune system and personally I think it's hazardous to your health in the long run. Have you tried home remedies? Or changing your diet?

jade301 12-20-2012 02:14 PM

Re: Biologic Question Any help is appreciated
 
I know the risks that come with biologics. I also know that for almost 17 years I tried everything under the sun for some relief. The disease process is very active and destructive. Without the biologics I would have even more damage than I do now at 32. This was not a decision i made lightly. For the first 10 years the biologics worked great especially the remicade, but the 7 before that were pure hell. I started having reactions and its been tough to find a new treatment, since I have exhausted not only the biologics but things like methotrexate, etc. I use steroids when appropriate but those arent long term either. It also wasnt easy to slather the creams on over 70% of my body where the thick plaques were.
I have changed my diet I eat a mostly vegan gluten free diet with low amounts of soy as I have noticed some increase in inflammation with those foods. I am careful to notice what I eat and how it makes me feel afterwords. I dont drink, I dont use drugs. I exercise when my body permits.
Like I said i have carefully thought and weighed out my options and this is the best for me. I know what biologics are, how they work and what long term data that there is out there for them. I would like to hold my joint and skin damage to a minimum and this is the only thing that has done that.


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