Anyone here that has both crohns and psoriatic arthritis?

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Labradorite
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   Posted 3/2/2018 9:25 PM (GMT -6)   
its been looking more and more like we may be adding psoriatic arthritis to my diagnosis since my recent discussion with my pcp but with it's odd presentation I'm still a little confused. flares frequently come on about 2 weeks after a remicade infusion and then disappear after about 3 weeks only to start to feel it again right before the remicade is due. The remicade then clears up the symptoms (joint and body aches, pains swelling). I have no skin involvement but this is the closest thing anyone can come up with. This bout was worse than most and I've had only mild relief Since the 4 week long flare up that came two weeks after the remicade. I can also start to feel the next wave of it coming in time for my next infusion. At its worst I have a selection of joints painful and stiff- this varies depending on the day from hands/ knuckles/fingers to knees, back, hips, feet. Pretty much all of them where hit this last time. Each day was a surprise as to which joint it had found itself in that day. It mostly loves 3 to four of the fingers my right hand and my right knee but they others have had their bad days too:/ During the worst my body feels like a lot of it gets tight and sore like I have to stretch it out to get relief, especially the upper back and arms which all get very sore and ache intensely. I feel like those bugs that need to crawl out of their little exoskeletons on these days. Once it lifts its an amazing feeling but it takes weeks to trudge through this. Some periods between infusions are better than others. I had some issues like this towards the end of my time on humira, but I also think I had a milder version of it when I was off meds and the crohns was starting to flare. Otherwise I look and feel great and my blood work was normal. Has anyone else had this? I still have to discuss whether my rheumatologist will consider doing imaging to give me some clarity and will be discussing med changes with GI.

straydog
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   Posted 3/3/2018 9:13 AM (GMT -6)   
Lab, I would ask to be referred to a rheumatologist for testing. Towards the end of my tenure with Remicade the joint pain really got bad. I also started having issues with my skin. My PCP sent me to a rheummie & I was dx'd with Lupus, induced by the Remicade. I was put on Placquenil. My feet & hands were raw & I kept getting cellulitis on both legs, in & out of the hospital because of staph in my legs. I saw a dermatologist that dx'd me with 4 different types of skin psoriasis. He also said he highly suspected PA on top of it. I was switched to Humira & it did not change a thing, gi said it was because of the two meds being so much alike.

I would not want my meds changed or something added until I could get it confirmed by a rheummie what is really going on. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Labradorite
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Date Joined Sep 2009
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   Posted 3/3/2018 9:44 AM (GMT -6)   
That sounds horrible straydog! Did it get better after you were off those medications?
I am seeing a rheumatologist. I have been going to this one for about two years now and have had every kind of blood test imaginable. She put me on plaquenil since she suspected PA early on but I still felt like there wasn't a lot of solid evidence since it was just going on my symptoms. I've had this issue for so many years. The first rheumatologist I saw years ago blames it straight away on the crohns without looking into anything. The second one felt there was something wrong and but hadn't yet been able to define it. I switched to this one when I changed my other doctors and so far PA is what she thinks it is after following my symptoms for a while now.

straydog
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   Posted 3/3/2018 10:35 AM (GMT -6)   
Yes, I finally did go off of Humira. I still have issues with psoriasis, but nothing like what it was. What was really strange is the outbreaks always hit the right side of my body much worse than the left. To this day no one knows why. We chalk it up to one of the many weird things that happens with me, lol.

The first rheummie I was sent to, he was a complete idiot!! He was more interested in asking me about my implanted pain pump than what I sent to him for. I did one visit with him & told my PCP I had no intentions of going back. She was shocked & completely understood. She sent me to another guy that is great.

It will be interesting to see what they can do medication wise. I hope you can get some relief soon.
Susie
Moderator in Chronic Pain & Psoriasis Forums

clo2014
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   Posted 3/4/2018 4:24 AM (GMT -6)   
Lab,

I am sorry that you are going through this.

This has been happening to me for the last 3 years! I thought that I was imagining things but it kept getting worse. I finally went to a rheumatologist who diagnosed me with "Crohns Arthritis" and osteoarthritis. I have a similar pattern of pain. It has impacted my knees so badly that I now walk in a wobble like fashion and frequently use a walker. Instead of additional.medication my doctor decided to use Turmeric. No more than 2000 mg. Daily. I use 1000 mg daily. Turmeric is a blood thinner so be careful. It helps me on most days. I still have pain but I don't always have to use a walker.

I have frequently wondered if I got off the Remicade if I would heal.

I hope they find some answers and relief for you!

Clo

Ides
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Date Joined Nov 2003
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   Posted 3/4/2018 5:03 PM (GMT -6)   
I have both CD and Ankylosing Spondylitis. At the time I was placed on Remicade, it was because the AS was so severe that I had to use a walker or wheelchair. I went from being totally able to in 3 months being in a wheelchair. My GI picked up on it and immediately started me on Remicade. That was in 2004. The biologics have been a blessing for me.

Go visit the Spondylitis Association of America /www.spondylitis.org. There is a section that explains all the related spondylitis diseases including Enteric Arthritis and Psoriatic Arthritis. AS is one of those diseases too.
Moderator Crohn's disease, Osteoarthritis and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

Labradorite
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Date Joined Sep 2009
Total Posts : 1119
   Posted 3/6/2018 4:57 PM (GMT -6)   
Thank you all!
@straydog, I'm so glad it got better when when you got off the humira! That was sort of what happened to me with it minus the skin involvement. I was much better but not completely 100 percent until the crohns s flared again eventuality. I feel like I'm having the same problem with the remicade now. I found two small spots - one on the knee that bothers me and the hip on the same side that *might* be psoriasis. I never would have noticed it if I wasn't looking so it's pretty mild if that even is what it is.

@clo, I'm so sorry you are still dealing with so much discomfort! I will have to look into the turmeric. I know what you mean about feeling like your imagining it! I feel the same way to the point I could cry, the only validation I get is when the feeling lifts or breaks after weeks of it and it's this feeling like "oh my goodness, this is how I am supposed to feel" and I realize how scary bad it was for awhile. Then I go back to forgetting how bad it was until the cycle starts all over againsad. I am super lucky though that my rheumatologist has not doubted me and has emphasized my symptoms are an issue even in when I'm feeling better and minimizing the issue so I've gotten a lot farther with figuring it out I think. I was originally dismissed by other doctors as it being crohns arthritis but I think that is seeming to be less the case at least right now. As for stopping the remicade, you and I would probably both see this issue disappear (mostly) and the crohns flare like I had happen when I quit the humira. I wish there was a better set of choices. Can't say I expect any other drug to work as well as the remicade has for the crohns so I'm skeptical about making changes. Not sure whether I may need extra or what at this point

@Ides thanks for the link, it's extremely helpful! I'm very glad that the remicade has worked so well for you! I'm hoping maybe more will do the trick for me.
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