Vasculitis

kevin47881

kevin47881

Final Approach
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Time to fly!
Good day all. My mother (65 years young) has been having great difficulties walking due to severe foot pain for a couple months or so. She has visited a couple doctors and received varied input but no conclusive diagnosis.

This past weekend the pain in her feet became so bad she went to the hospital where she was promptly admitted. After a battery of tests, she was told today she has vasculitis. Like a good son, I have done some searches on Google but would like some input from those in the know.

What is the prognosis? What is the cure or regimen to get her back on her feet? I spoke with her tonight and as she just received the diagnosis today, didn't have any answers to my questions.

So, my question to the good doctors here, any input you offer will be greatly appreciated.

Thank you in advance!
 
smigaldi said:
Sorry to hear about this Kevin and hope she recovers.

Is there an underlying cause for the vasculitis?
Click to expand...

Thanks, Scott.

So far they don't know the cause or route to recovery. They have done two full body MRI's, neurological tests (can't be more specific as I don't know), blood tests until she ran dry, etc. She has been in the hospital since last weekend and yesterday they made the diagnosis. As she has a team of doctors looking at her, I'm confident she's in good hands but am cautiously optimistic about them finding an underlying cause. If we can just get her back on her feet with minimal pain it would be a huge success.
 
Today was not a good day. The Rx they put mom on did a number on her stomach (not sure what they put her on, she wasn't in much of a mood to talk). In addition, she had significant leg pains; to the point of needing pain meds. As a result, she had a CT scan done today to find out the reason the Rx may be causing problems. Results forthcoming.

Argh, one step forward, two steps back.

/rant off
 
kevin47881 said:
Today was not a good day. The Rx they put mom on did a number on her stomach (not sure what they put her on, she wasn't in much of a mood to talk). In addition, she had significant leg pains; to the point of needing pain meds. As a result, she had a CT scan done today to find out the reason the Rx may be causing problems. Results forthcoming.

Argh, one step forward, two steps back.

/rant off
Click to expand...

All I can say is hang in there. I know how this can be...

Our prayers are with you.
 
The CT scan and blood work have all been negative (guess that's good?).
Tomorrow they are doing a liver biopsy in hopes of determining the cause. They have also put her on an IV for nutrition due to not being able to eat and the testing they are doing. The pathologist and rheumotologist (sp?) are hopeful tomorrow will provide some answers.

Thanks to all that have provided insight and/or encouragement whether publicly or via PM!
 
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Kevin, there are aboutr five or six vasculitic syndromes that are all treated differently. Usually there is an angiogram and a tissue biopsy to categorize which ones and how specifically to treat them....but not always necessary if there a distinct organ by organ presentation.
 
Well, for those interested, here's the latest in the long running saga:

Spoke with mother last night and all biopsies (nerve, muscle, kidney added to liver) are negative. This helped put her in much better spirits. The long term prognosis is still unclear but they expect her to be released from the hospital as early as tomorrow with a walker.

I need to find out more about this but she stated they are doing an aggressive treatment. When I asked for specifics she didn't have the Rx names (all oral) but said one is used for cancer treatment (need help here as all her blood work is negative).

The difficult part is that this youngish lady who use to walk laps around me a couple months ago has been significantly slowed. All the while, I'm thankful to know overall she is in excellent health. I keep telling myself to focus on controlling the controllables.
 
Mom has been released from the hospital and will be receiving in-home care. The doctors say it will be about 6 months before she will be able to walk sans walker.

The treatment is a high dose of steroids, an oral chemotherapy drug (still don't know the name as she was leaving when we spoke this afternoon) and physical therapy.

Progress is being made albeit slowly.
 
kevin47881 said:
Mom has been released from the hospital and will be receiving in-home care. The doctors say it will be about 6 months before she will be able to walk sans walker.

The treatment is a high dose of steroids, an oral chemotherapy drug (still don't know the name as she was leaving when we spoke this afternoon) and physical therapy.

Progress is being made albeit slowly.
Click to expand...

Thanks for the update.
 
Alrighty, here are the Rx Mom is currently taking:

BEFORE BREAKFAST
Cyclophosphamide (Cytoxan) 75 mg daily – for three weeks
Levothyroxind (Synthroid) .075 mg daily
Blood Sugar – Twice a day


AFTER BREAKFAST
Amlodipne (Norvasc) 10 mg daily
Atenolol 50 mg daily
Cymbalta 60 mg daily
Pantoprazole SOD 40 mg tab
Wye (Protonix ) 1 daily
Prednisone 20 mg 3 each daily for 1 month (take with food or milk if upsets stomach

TWICE A DAY
Metformin HCL 500 Mg tablets – 1 tablet by mouth twice daily


Can any of the good docs be kind enough to shed some light on this treatment regimen?


FWIW, she is steadily improving and is actually walking more today then yesterday. The walker is still needed however.
 
Kevin, this is a grope in the dark. I don't have her diagnosis. There are a couple of kinds of vasculitis- Wegeners, Giant cell, Polyarteritis nodosa, temporal arteritis....all are different. For me to help out, I need their diagnosis.

But in any case, Cyclophosphamide is a susbstance that inihibits cell division. When you get too much of it, the throat develops ulcers, so does the urinary bladder, etc.

But Wegener's already threatens the kidneys, the nasal septum.
Temporal Arteritis is a small arteriolar non giant cell arteritis that affects proximal muscles, but also the retinas.
Takayasu arteritis can actually cutoff organs from their blood supplies.
Polyarteritis nodosa wreaks its havoc on the abdominal organs....
 
Bruce, I asked mom and she doesn't know the exact diagnosis but did e-mail this:

The last I heard is that it affected my small blood vessels and kidney.
My main symptoms were weakness, numbness, tingling and pain in both feet (below ankle level), calf pain and generally feeling crappy. Weight loss (25 lbs. in two months), no energy and just wanted to sleep all the times. Hospital test showed abnormal blood counts throughout my body, anemia, and the Kidney biopsy showed some Vasculitis in the third level.


Not sure if this is of any help but it's all she can offer.


Thanks!
Kevin
 
Sounds like she has an autoimmune vasculitis. Sixty mg of prednisone for several months is a pretty high dose, and can lead to other issues like osteoporosis, avascular necrosis, and a Cushingoid appearance.
 
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