Vasculitis EIM

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my little penguin

my little penguin

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Has anyone had vasculitis as an EIM?
This is the third time for DS.
Rheumo upped his pred for the next five days then a consult.
I have never heard of this one before this.
Anyone????
 
Sorry MLP, I've never had to deal with this. Poor kid, I hope the pred can get it under conrol quickly! :ghug:
 
Hi
I have had vasculitis but mine happened because I was on humira for crohns. Since I have stopped it hasn't come back any where near as bad. I sometimes still notice small patches but it covered all of my legs when I was on the humira.
Sorry I can't really help much and hope it gets better soon.
 
Thanks
Maybe that is why the Rheumo knew what it was and the why but Gi is looking at us like we have two heads.
It went away on its own twice after 6-8 hours . This last time the Rheumo increased his pred right away and it went away. Gi never returned our call. However we all know high dose pred is not the answer . We have to call Rheumo back on Tuesday then a decision will be made I guess:yfrown:.

How is we get the one thIng no one has heard of... :shifty-t:
 
David -
First time-
right foot- all of his toes nails had what seemed like dried blood around them. His entire foot was bright red and swollen. The redness streaked up his calf. The redness went away if we put it in warm water only to return once it was taken out. Oncall GI thought cellulitis and sent us to the ER. By time we got there it was gone. Lasting 6-8 hours from start to finish. We assumed trauma or allergic reaction since he has a lot of allergy issues.

Second time- one week later same foot. Red swollen and again with the toes/dried blood. Still thought allergy. Allergist agreed it wasn't and sent us to the ped to determine if it was cellulitis again. Ped saw the rash- we took photos this time and saw it progress from foot to ankle to calf to thigh. Ped watched it disappear. Whole thing 6-8 hours again.
WE did blood work for clotting factors all was good. Allergy sent us to rheumo who did a complete examine saw the photos and declared vasculitis as a result of un-controlled crohn's with instructions to send him anymore pics should it happen again. He recommended we increase meds to at least 15 mg for the MTX. We saw Gi following week who agreed to increase the meds and ordered an ultrasound of the leg. Ultrasound was clean. the whole time during this we had been weaning from pred by 5 mg a week.

Third time (4weeks after the first),
He had one red spot on the bottom of his left foot (blood red) at night wed. Allergy kiddo so I ignored it.
thursday morning- three more red spots so photos were taken and sent to the three specialists (GI, allergy, Rhuemo). After an hour or so his right ankle got a spot became slightly swollen and pink around the spot.
Rhuemo saw the photos and said it was vasculitis again. He upped the steroids from 5 mg (end of taper to 25 mg day one and 20 mg day 2-5). he told us to increase the pred right then and not to wait. The rash disappeared very quickly - a few hours after the pred.
He made it seem like this was not a good thing just not sure how bad it is.:shifty-t:
WE have to update him on DS's progress tuesday morning.
GI has been silent on the whole thing.
WE were in the process of getting a second GI opinion on the crohn's treatment out of state but the rheumo stated we may not have time for this.:frown:

This all happened shortly after starting MTX injections.
 
David-
only "supplement "- peptamen jr with prebio.
dietary restrictions - nuts- food allergy, beans, seeds and too much fiber at once --C is his issue not D


Rheumo has a lot of experience with MTX and never mentioned that was the cause just that it didn't seem to be working enough for him.
 
Have you googled MTX and vasculitis?

What is the time span from taking MTX and the onset of symptoms?

Can you share the time span as to what other meds, including the pediasure, any over the counter meds or herbs, homeopathic meds etc. and the onset of symptoms?

There is a website that you can go to and list all the meds, including what is in the pediasure, and it will let you know if there are any possible reactions between all the meds. www.drugs.com

Forgive me if I've listed things your son does not take. I'm only trying to help you sort some of this out. The symptoms must be scarry for you and your family.

David is right that MTX is a treatment for vasculitis.

Below is a website I located with some interesting information that indicates MTX can actually cause vasculitis:

http://www.ncbi.nlm.nih.gov/pubmed/9552765

Leukocytoclastic vasculitis induced by low-dose methotrexate: in vitro evidence for an immunologic mechanism.

Halevy S, Giryes H, Avinoach I, Livni E, Sukenik S.
SourceDepartment of Dermatology, Soroka, Medical Center, Faculty of Health Sciences, Ben-Gurion University of the Negev, Beer-Sheva, Israel. [email protected]

Abstract

The rare occurrence of methotrexate (MTX)-induced vasculitis has been associated mainly with high or intermediate MTX doses. We report herein a case of cutaneous leukocytoclastic vasculitis (LCV) following treatment with low-dose oral MTX (7.5 mg/week) for rheumatoid arthritis. The histological findings of a cutaneous lesion were consistent with drug-induced vasculitis. The clinical and histological findings, including the temporal relationship between MTX intake and the onset of vasculitis, and the results of withdrawal and rechallenge tests, suggest a causal relationship, and indicate a drug-induced LCV due to MTX. The role of MTX in the induction of the vasculitis was further supported by a positive mast cell degranulation (MCD) test.

FYI - Cutaneous leukocytoclastic vasculitis (CLV) is a necrotizing inflammatory disease of the small vessels in the dermis

This website has photos that may be similar to what you are describing it covers: Allergic vasculitis Vasculitis - allergic; Hypersensitivity vasculitis; Cutaneous leukocytoclastic vasculitis

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001877/

The two links below are what google list for the search I typed in.

http://www.google.com/search?q=cutaneous+leukocytoclastic+vasculitis&sourceid=ie7&rls=com.microsoft:en-us:IE-Address&ie=&oe=

http://www.google.com/search?q=mtx+%2B+vasculitis&sourceid=ie7&rls=com.microsoft:en-us:IE-Address&ie=&oe=

Good luck. Keep us posted as to what you find out. I don't know if I've listed anything that will be helpful to you.

Your family is in my prayers. Naturelover
 
MLP, how is your son doing today? Hope it's gone away and hasn't returned! And that you are able to get some answers from the rheumi today! :ghug:
 
my little penguin said:
Has anyone had vasculitis as an EIM?
This is the third time for DS.
Rheumo upped his pred for the next five days then a consult.
I have never heard of this one before this.
Anyone????
Click to expand...


I am brand new to this site, but was alerted to your question via a daily google search that I initiated several years ago after my daughter's condition progressed from simple refractory Crohn's to the addition of an additional condition described as one of several autoimmune vasculitis conditions. Autoimmune vasculitis is another type of chronic autoimmune disease that affects blood vessels.

Let me know if you wish to know more about ANCA related vasculitis disease. I hope this is not what you are referring to, but if so...act quickly and get an early diagnosis and aggressive treatment.

Best wishes,
Alison's mom
 
Thanks Alison's mom.
That Mr. Google is amazing. I once asked a question and one of my replies from here popped up. Neat and kind of scary all at the same time.

Your poor daughter sounds like she's been through quite an ordeal.
I hope you feel free to stick around. We always find a way of helping each other.

Farmwife
 
thanks for all the warm thoughts-The vasculitis disappeared within hours of increasing the pred. There are no ulcers on his skin just redness, puffiness and the last time a few red raised small areas.
We are still in the process of getting a 2nd opinion since DS is not following the "normal" IBD memo.
Current plan is to try to taper again slowly 15 mg this week and then 5 mg a week with the intent that he would be able to start remicade:ywow: before he gets off pred. Any redness or return of symptoms and we are to increase the dose.:voodoo:
We also are to get an MRE before starting the remicade.
The rheumatologist did not mention any autoimmune vasculitis :shifty:
so Alison's mom any info you have would be GREAT:biggrin:
The 2nd opinion place did ask 3 times if he ever had any immune blood tests???:yrolleyes: just not sure why or which ones they were talking about. Hopefully we can get in before the remicade starts. Please keep your fingers and toes crossed.
 
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A daily google search?! What we need round here is an hourly one:biggrin:

MLP: Yikes! So sorry to hear you are having to go to remicade but I will be praying it fixes all your guys ills for once and for all. What a super dooper trooper he is! Not to menntion you!!!!!
 
I do not yet know how to utilize this forum, so I hope I am in reply to all that responded above. My daughter was diagnosed with Crohn's, and after all treatments proving to be refractory (not of much help,) she developed the secondary, much more severe diagnosis of Wegner's granulomatosis. I do believe it was related to years of immunosuppression with Humira and Remicade. But, she had no other option for treatment.

Doing well, and glad to hear that you are not dealing with a full blown case of vasculitis.

Best wishes,
Jane, mom to Alison

Rituximab, two series of IV infusions, six months apart. Treated and dx'd at the Mayo Clinic, Rochester, MN, USA
 
Alison's Mom - I know I may not want to know this but did she ever have cysts found on her kidneys in the beginning???

Ds has bilateral renal cysts as well as a lot of other stuff going on.
 
I hope you can get your apptmt for the 2nd opinion really soon!

But, MLP, try not to jump the gun with worries :( I know it's so easy to fall into that deep, deep well of worry! Just recently, when my daughter was being tested first for RA and then the initial Lupus test (think it was ANA??) came back mildly positive, it was so easy for me to 'identify' so many symptoms! I was 99% sure that, at the follow up, they were going to diagnose first RA and then Lupus. Turned out to be neither.

I know we, here, have all learned to prepare ourselves to hear that 'diagnosis' and that our concerns are not always 'unrealistic' :( but just trying to say try not to 'panic' before you see the doctor. :ghug:
 
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Thanks Tess
Vasculitis came back last night but resolved.

maybe the lower pred (15 mg) - we are trying to wean so he isn't on pred very long while on remicade. Since it has been over 2 months since he started pred.:thumbdown:
We have joint pain back, inability to "go" and headaches from the wean
going to be a fun few weeks. If the vasculitis shows up again we have to go back to 20mg until the remicade takes over.:voodoo:
insurance approved remicade so now - I have to ......:shifty-t:

schedule the infusions....:yfaint:
 
Just out of curiosity, does your son's vasculities look like any of pictures on the one website I posted. Just trying to get an idea of what it looks like.

I'm sorry to hear he had another break out. But glad to hear it resolved.

You are in my thoughts and prayers. Sending warm and gentle hugs to all.

Blessings,
NL
 
Oh mlp,
I'm so sorry to hear that. Your poor guy.
Will he be able to start school?

I pray for better days ahead.

Farmwife
 
Something has been bugging me about this. Someone correct me if I'm wrong, but my understanding is vasculitis results in destruction of the blood vessels so you'd actually have blood under the skin like a bruise if it was shallow blood vessels like it sounds like. Yet you describe everything disappearing after 6-8 hours or faster with prednisone. I just wonder if this is an allergic reaction?

Or am I mistaken about the nature of vasculitis?
 
In DS 's case vasculitis is inflammation of the blood vessels similar to the intestine. With time it can lead to weakening , scarring , narrowing and rupturing if it is reoccurring. We can see the spots of bright red blood pooling under the skin and sometimes the soft tissue is inflamed. The Rheumo believes there has not been any damage yet. But left unchecked it could lead to damage. The Mtx is doing something . At the higher doses the vasculitis is less noticeable .
But just not enough .
We go for a second opinion at the end of the month so.... This may all change
 

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