Brain Involvement?

[godgirl]

For those of you who have had it, did you have any symptoms? I had an MRI back in March 2014 when all of this crud started up. They found scarring (the neurologist called the spots that), but said it was nothing to worry about - said it was probably due to my migraines.

As of this spring, I switched to a different rheumy. (He's awesome, by the way.) I had a checkup last Thursday and he was shocked when I told him that tapering on the prednisone was killing me. All my aches and pains are back, I'm having symptoms pop up and then go away and still get so tired so easily. It's weird. I'm currently on 25mg (injectible) mtx and 4mg pred. He was shocked because he thought I should be feeling a lot better. Asked me why I didn't contact him. I told him that I always feel this way going down on pred. Per my last doc, yeah, all this stuff would happen. He said that NO, it shouldn't be this way. He was hoping the injected higher dose of mtx would work.

So he ordered a bunch of bloodwork to see where my levels are at. He emailed me this morning saying my sed rate and CRP have gone up again, and he's waiting for the oher results - including the test to see if I can take imuran (AZA).

We then talked about my hearing and how it flucuates. Since it's not "classic" wegs hearing loss, he's also at a loss. (I don't get infections - my ears look fine. My eighth cranial nerve is affected.) He was obviously concerned. He then dug in a bit to my ENT stuff, noticed the "possible Cogan's syndrome" and then said to me, "What's this abnormal MRI?" I told him what the neurologist said, and he immediately said that I needed another one to make sure that's really what it was. Apparently, the radiologist actually put in in the report that the lesions/scars were very unusual for someone my age and could indicate microscopic vasulitis. Sheesh! It's worrying me - both because if my brain is involved, I need to be on something stronger, and that the doc is obviously concerned.

So I'm wondering if there would be any symptoms. Because I don't think I've had any. Although, I don't know what they would be...

Thanks.

Jen

[Debbie C]

Hi Jen..sorry I can't answer your questions although lately I have been wondering the same thing,as far as symtoms go. It does sound like you have a great dr now and how scary for you that your other dr. to just dismiss the report...if in fact he actually read it ! I would take the report to the office full of patients and demand to talk to him about it. Possible negligence if you actually have it.I was told I had an infartic stroke at some time , which I didn't know about and also about 5-6 TIA's . But my dr at CC said you can't tell on a mri about TIA so kinda makes me wonder. Good luck on your other tests and hopefully someone can answer your concern

[Alysia]

Hi. I am sorry for your pains. Switching mtx to aza is not enough if you are flaring or smoldering and I am afraid you are. It means that you need rtx or ctx. As for brain involvement, scary issue indeed. I was also afraid after neurological check when the doc suspected that I didnt have enough continuity in my eyes movements. She sent me for brain CT which was ok. When its brain involvement there are neurological symptoms, which can be found on neurological check. I have a weggie friend on fb with it but she is very severe case. We have vdub here. And if I remember correctly there was Tom who did brain biopsy?? Not sure. If I will find his thread I will attach it. Anyway if you get a decent treatment it should help everywhere. Hang in there and update us.

[Green Grass & High Tides]

Hey Godgirl,

Glad to hear your new doc is on the case and making the right calls. I'm told that aggressive treatment is required if there is CNS involvement.

I've had CNS involvement for god knows how long. Probably from start 1998. but it didn't really attack my brain severely until about 15 months ago. That was a show stopper.
Still digging out but thank God you haven't had any severe bleeding so far... or so it would seem...

I took the 1000mg / day x 3 days of Solu Medrol to stop the bleeding and that worked. Pred is the only other thing has worked well but I have major side effects from it since taking the solu medrol at that high of a dose.
I take counteractive meds to balance the pred for now until I can get off it and the cytoxan and then I'm going to get a full endocrinology workup.

Treatment is working and I have a life. I can walk and talk and though I'm limited sometimes 2+2=4!

Keep the faith!
Tom

[Alysia]

Hey Godgirl,

Glad to hear your new doc is on the case and making the right calls. I'm told that aggressive treatment is required if there is CNS involvement.

I've had CNS involvement for god knows how long. Probably from start 1998. but it didn't really attack my brain severely until about 15 months ago. That was a show stopper.
Still digging out but thank God you haven't had any severe bleeding so far... or so it would seem...

I took the 1000mg / day x 3 days of Solu Medrol to stop the bleeding and that worked. Pred is the only other thing has worked well but I have major side effects from it since taking the solu medrol at that high of a dose.
I take counteractive meds to balance the pred for now until I can get off it and the cytoxan and then I'm going to get a full endocrinology workup.

Treatment is working and I have a life. I can walk and talk and though I'm limited sometimes 2+2=4!

Keep the faith!
Tom

Hi Tom. I remembered your thread.
Jen, this is the one: http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/4071-any-wegs-brain-attacks.html

[godgirl]

Thank you, everyone.

And thank you, Alysia for pointing me to that thread!

[drz]

Link to good info on Diagnosis and treatment of cerebral vasculitis


Diagnosis and treatment of cerebral vasculitis (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002614/)

This article also gives number of incidence of positive ANCA findings:

cANCA/PR3 are present in 70% of patients with limited WG and in >90% of systemic WG cases.

[Green Grass & High Tides]

Link to good info on Diagnosis and treatment of cerebral vasculitis


Diagnosis and treatment of cerebral vasculitis (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002614/)

Interesting that they found those taking <10 grams of Cytoxan in the first 6 months had higher relapse rates.

I'm about to get my final CTX dose -2200mg which will come out to 9200 mg, just short of the 10 g mark.
But I did many doses of Rituxan the first 10 months... Which the docs felt was the most effective at the time.

[godgirl]

Thank you so much for the article, drz! It helped - and explained a lot - but I'm still nervous.

The imaging dept called last Friday (Sept 4) at 8am. My MRI was scheduled for 2pm the same day. The gal told me that the technician was looking over his schedule and realized he was going to need a lot more time for my case. (???!!!) So they had to reschedule for THIS Friday (11th). So, I was freaking out a bit before, and now I'm freaking out more. I just want to get it over with. Sheesh.

Doc called last week and said my bloodwork indicated I was a good candidate for AZA, so I started that a week ago. I'm on a half dose until my bloodwork in a week, then if that's ok, I go up to a full dose. I get to go up on prednisone as well (4mg to 10mg) since I feel so crappy, but I am waiting until after the MRI to do that.

Alysia - I agree. I've thought for a long time I should be on rtx or ctx. But the docs are hesitant to be aggressive since they're not exactly sure what's going on - and so far, everything is limited. I just wish I felt better. Let me rephrase that. I wish I felt like I did way before all this happened. But I know that will probably never come my way again. I feel "eh", alright. I can get through work, but it's a challenge some days. Especially with a swollen knee, ankle and foot pain, hip pain, finger joint pain, etc.

I soldier on. Just like all of us... :cool1:

[MikeG-2012]

I soldier on. Just like all of us... :cool1:

I'm with you weggie sister. You know you are one of the family now that you've started talking to all of us on the forum, right? Whether or not you get a diagnosis, you're one of us now! (-8

[godgirl]

Thanks, Mike. That means a lot.

Update: "No new concerning findings" on my MRI!!! I am SOOOOOO relieved! As much as I would love to have a definite diagnosis, I certainly didn't want the wegs dog to be messing with my brain. I've got enough trouble there! hahaha!

So, now I wait to see if the azathioprine and higher prednisone will help. I certainly hope it does. Because I keep feeling like this isn't being hit hard enough...

Jen

[Alysia]

Alysia - I agree. I've thought for a long time I should be on rtx or ctx. But the docs are hesitant to be aggressive since they're not exactly sure what's going on - and so far, everything is limited. I just wish I felt better. Let me rephrase that. I wish I felt like I did way before all this happened. But I know that will probably never come my way again. I feel "eh", alright. I can get through work, but it's a challenge some days. Especially with a swollen knee, ankle and foot pain, hip pain, finger joint pain, etc.

I soldier on. Just like all of us... :cool1:

in my opinion, or at least in my case, rtx is way less aggresive then Imuran. and letting the wg beast be active too long is also more "aggresive" then rtx.
sorry to say, docs are not giving rtx so fast just because it is very expensive. you deserve to get the best. insist if you feel that the Imuran wil not help or if you will feel that its too much time to wait.