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Crohn's Disease Forum » Parents of Kids with IBD » Vasculitis and Crohn's?


07-04-2014, 03:03 PM   #1
araceli
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Vasculitis and Crohn's?

I was told yesterday by phone that my girl has vasculitis due to her Crohn's.
Three remicade infusions ago, her fingers turned blue right after infusion was done (it was done faster then usual). She was monitored for 2 hours and it resolved by itself. Pediatrician was at the clinic and told me it was vasculitis. Pedi and GI decided, after I asked to infuse at slower rate at next infusion, they said 6 hours. After we left the clinic her fingers got a little swollen and it took about 20 hours for the swelling to disappear completely. It was then decided to pre-med before infusion with benadryl and Hydrocortisone and do it slow again. Everything went great and no blue or swollen fingers after remicade. Six days later a little of blue, swollen fingers showed up. Also a rash on her forearm. I called the pediatrician and I was told to give her atarax. By the time I gave it to her, symptoms were already improving (it lasted about two hours). Doctor said that it was vasculitis related to her Crohn's not a reaction to remicade. ?????
She is on remission according to scopes. Any advice, opinions, or thoughts?
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
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Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
07-04-2014, 03:45 PM   #2
my little penguin
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Vasculitis is the rheumological domain.
DS had it from under treated crohn's while he was on Mtx a few summers ago.
I would make an appt with a Rheumo they should be able to determine what is going on.
Our ped does not handle DS crohn's at all only the GI and Rheumo .
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07-04-2014, 04:49 PM   #3
araceli
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Thanks mlp. I will make an appointment with the rheumo. Her pediatrician is also an oncologist, so he is always at the oncology clinic where she gets the infusion and for some reason GI delegates a lot of things to him like the pre-meds, duration of infusion, etc etc. He has a reputation of being the best Pedi in here so a lot of Doctors trust him a lot. I have not talk to her GI yet.
She will not have vasculitis symptoms if her Crohn's is under control? I have tried to do some research about it but have not found a lot.
07-04-2014, 05:25 PM   #4
my little penguin
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According to our Rheumo DS only had vasculitis since his crohn's was not under control.
Its a EIM of crohn's.
At the time DS was on Mtx plus pred to give the Mtx time to build up.
Every time we lowered the pred dose to start to wean he got vasculitis symptoms .
Eventually switched to remicade and we were able to lower his pred no issues .
07-04-2014, 05:44 PM   #5
Maya142
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Could the blue fingers be Reynaud's phenomenon? Reynaud's should also be treated by a rheumatologist. My daughter has it, but hers isn't bad enough for treatment. Her fingers turn blue in the cold.
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07-04-2014, 05:56 PM   #6
my little penguin
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Take lots of pictures since they rash -fingers may not cooperate for the appt
07-04-2014, 06:38 PM   #7
Patricia56
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This article may be helpful if a little scary and it's pretty technical. It specifically mentions the development of peripheral neurological symptoms in response to immune suppressing meds but that's all it does - mention it.

https://www.medlink.com/medlinkcontent.asp

Also leukocytoclastic vasculitis is a known but very, very rare side effect of remicade. Here is a link to the e-medicine article about it. It may explain the rash but doesn't seem to match the other symptoms:

http://emedicine.medscape.com/article/333891-overview

I agree that you should consult rheumo as well as GI. Be sure and take pics.
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Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
07-04-2014, 06:53 PM   #8
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Hi,

I would like to share with you that I was diagnosed with vasculitus 3 years ago. In my case the Vasculitus was a "sign" For the Crohns to go active again. Besides vasculitus I also had reu,atic pain and paradonditis. These there were the "kick off" to a horrible Crohms activity that is so terrible. My advies to you would be monitor each day very Well. Start inmediately a offencive against the Crohns by healthy food, stress reduction (mindfulness, vacation and sports). Big luck too you!
07-04-2014, 07:48 PM   #9
araceli
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Thanks. It is going to be fun trying to get a Rheumy referral from her Pedi. Good thing she is going to be 18 in a month and insurance does not require one anymore. She has been complaining about hip pain since yesterday, so something is going on. Also my son is loosing a lot of weight for no reason. I guess my little break is over, It was beautiful while it lasted.

Last edited by araceli; 07-05-2014 at 03:40 PM.
07-05-2014, 08:24 AM   #10
Sascot
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Sorry to hear things are deteriorating. Hope you get a referral okay.
07-05-2014, 01:23 PM   #11
Patricia56
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Sorry to hear things seem to be going downhill. Hope it's just a blip.
07-16-2014, 03:15 PM   #12
araceli
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Little update. GI appointment went well, he agrees with rheumy appointment, meantime he order remicade antibody test, vitamin D, CRP, Sed rate and Vit B tests. I will know results in about 7 days. She has not show any signs of vasculitis since the one 6 days after infusion. I took my son to Pedi due to loosing 5 pounds in one month (The meds he takes have a side effect of weight gaining). He gets dizzy when standing up, a test was done with him laying down, sitting and standing up and it shows that his blood pressure drops and his heart goes a lot faster then normal when changing positions. His breast tissue is getting big. (like girl breast) Ultrasound came normal so Doctor will monitor that. Bunch of blood, stool and urine tests were ordered, I will have results in a couple of days. Funny his pedi put on the labs order DX... Crohn's/Anemia but my son has not been officially diagnosed. I guess is like saying they are looking for that?
07-16-2014, 04:41 PM   #13
Clash
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Does he think the orthostatic changes in hr and bp were due to anemia? Does the hr remain high after the postural changes? For instance, after his hr escalates upon standing does it continue to be higher until he sits or lays?

C had a high heart rate when dx that went higher with activity and was short of breath a lot. His was due to anemia and it corrected itself once he started his CD meds.

I have postural orthostatic tachycardia syndrome, which means my hr goes much higher upon standing. Drops in bp can occur along side the hr changes but isn't necessary for the dx. A normal orthostatic change corrects itself very quickly those with postural orthostatic tachycardia syndrome it remains high. One of the parents, imaboveitall, has a daughter that also has this.
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C age 19
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CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
07-16-2014, 04:43 PM   #14
my little penguin
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Hugs
Typically the dx code gets things paid for when they are still determining it
It might still be a working dx .
07-16-2014, 09:33 PM   #15
araceli
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Doctor never mention anemia. He told my son that some people are born like that and explain about blood flow and all that, or that it may be hormonal, to hold on things when standing or getting out of bed, that we need to monitor and if necessary will give him some meds. But.... he order complete Iron test and infection tests, glucose so he is covering everything that may be responsible. For some reason, back in my mind I think it can be from one of the meds he is taking. I don't know if his hr goes down when sitting, actually he was sitting when they took the blood pressure and it was fine, just his hr was high that's why they did the other test. He has not complain about being short of breath. I need to keep an eye on this.
07-16-2014, 10:26 PM   #16
Catherine
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We had this also. In our experience it got worse with continue loss weight and anemia and then the fainting began.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-17-2014, 05:50 PM   #17
Patricia56
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Glad the doc responded with screening tests for a wide range of possible explanations. Hope you get the results soon.
07-24-2014, 08:38 PM   #18
araceli
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Result are back. Daughter.. Remi drug level 56 ug/ml. reference range: Quantitation Limit <0.4 ug/mL. Anti-Remicade Antibody <22. Quantitation Limit <22. I have not talk to GI and this is the first time she gets this test so I am not sure but looks like this are good results about remi. Correct me if I am wrong. Test were done 2 weeks after infusion. If anybody is familiar with remi-levels please tell me. Only thing is her V-D is at 35 (30-100) and she has been supplementing with 5000 daily. I don' know why is so low. SED, CRP, B-12 are good.
Son... Complete Iron tests came normal. Albumin (H) Globulin (L) A/G ratio (H) WBC (L) RBC(H) Others within range but some one point away from being low. one more week until Pedi appointment. Still loosing weight. I forgot to ask for V-D test, he has been lower than sister before.
07-24-2014, 09:59 PM   #19
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Thanks mlp. I will make an appointment with the rheumo. Her pediatrician is also an oncologist, so he is always at the oncology clinic where she gets the infusion and for some reason GI delegates a lot of things to him like the pre-meds, duration of infusion, etc etc. He has a reputation of being the best Pedi in here so a lot of Doctors trust him a lot. I have not talk to her GI yet.
She will not have vasculitis symptoms if her Crohn's is under control? I have tried to do some research about it but have not found a lot.
I am an adult but I have had vasculitis problems/symptoms while my Crohn 's was under control. Two separate issues both scary. My rheumy told me that those problems can happen even if your disease is not active or under control.

So sorry to see all of the problems she is having. Hope she feels better soon.
07-24-2014, 10:03 PM   #20
Maya142
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araceli those do look like good results! My daughter had very similar results - basically no anti-bodies.

I hope the doctor can help your son and figure out what's going on
07-24-2014, 10:11 PM   #21
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Glad you got good news. My vit-d levels go up and down sometimes it is just the nature of the beast. With them low it will make her hurt more.
08-11-2014, 09:35 PM   #22
araceli
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Update. No signs of vasculitis for my daughter so far. Waiting for next infusion to see what happens. Going for 10 000 UIL Vit-D. Rheumatologist is not taking new patients, they told me to call back next year. Not to many options left. Probably I will have to look outside my city. Son still loosing weight slowly but surely. He is not anemic and he does not have D. Vit-D test is back and is at 26(30-100) Also going to 10 000 UIL for a while. GI wants to do Pill cam. We are waiting for the appointment.
08-11-2014, 10:37 PM   #23
Mountaingem
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I developed vasculitis with Crohn's disease. The Rheumatologist uses the same meds as the GI so once the Crohn's gets under control, the vasculitis should improve. I would tell your daughter's GI and perhaps he can fastrack an appointment with the Rheumatologist for her.
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