Get a second opinion? Or not. In US. Cleveland Vascular Center or Mayo.

[Jessileigh]

Has anyone been to the Cleveland Ohio Vascular Center? Its not too far from me. Also the Mayo Clinic in Rochester Minnesota might be helpful. I already have a GP and Kidney doctor who are very competent. I dont want to spend all my time running tests etc that have already been done. I just had a major flare just as I was nearly done with prednisone and all the other drugs. I am getting pressure from my family to get a second opinion, but vasculitis is such a guessing game. I will be leaving work for awhile. Does anyone know what these centers can do for me that hasn't already been done? I have IGA Vasculitis HSP

[Sicilianmama]

Hi Jessileigh, I was at the Mayo Clinic in Rochester last year for possible wegners. They were very thorough and nice but there were conflicting opinions! I went through the critical care dept. I left there with no real clear answer, couldn’t rule it in or out. Still in limbo. I have Multiple sclerosis, probable lupus, Raynauds, positive Anca and more. You have to be accepted there to be seen it’s a process and a tight one! You may have to also wait.

I would suggest the Cleveland clinic I heard they are better with vasculitis. I’ve never been there but would try them next if I needed to! Good luck to you hope this helped!

[Jessileigh in reply to Sicilianmama]

Thanks! That's kind of what I was thinking. I'm near the University of Iowa and feel that I am getting great care. I'm just going to stick here and try to live a little, instead of waiting and getting into another system that may not have anything more definate to say. These vascular diseases are so frustrating because they are so rare and we all seem to have more than one autoimmune disorder happening together. I'm giving it all up to the doctors I have and to the Universe! Thanks for replying! I wish you the best! Keep fighting the good fight. But dont forget to sit still and listen to the birds every once in awhile!

Jessileigh

[Christophene47]

Hi Jessileigh,

What symptoms are your symptoms of IGA vasculitis if I may ask? And how was it diagnosed? Thanks.

[Jessileigh in reply to Christophene47]

Christophene47,

Thanks for questions. I had to leave my job last week, and haven't had the time to get back here.

I have HSP IGA vasculitis. I was diagnosed at age 28, when I went from very healthy to sudden intense pain from hips down and pinprick spots hips down, especially below knees.

Dermatologist biopsied the spots. That's where they found the IGA deposits under inflorescence.

At that time, I was given a taper of prednisone from 80 mg to 0mg over the course of a year. And done. Thought it wouldn't come back. I was followed a few years by nephrology, they were confused. But no worsening and no real kidney damage.

Then age 42, pain and a few spots. Back to nephrology. By the time I got there, spots were gone, thanks to prednisone. Lots of stomach pain and soreness everywhere from pelvis to diaphragm and all around. Labs said elevated microalbumin, ESR, CRP. Prednisone and cyclophosphamide. Yuck.

Prednisone is such poison. Anyway, almost 2 years getting off it, labs steady, ready to go back to normal and major flare at 5 mg pred.

They did a kidney biopsy during this period. I switched docs and she wanted to be sure we were treating the right condition. Lots of IGA on inflorescence, but no crescents and no active kidney damage at the time.

So now 44 years old, back to 30 mg pred for a few months. Then I'm on the 3 to 5 year taper, and probably stop and hold before 5mg. I'm taking mycophenelate 300mg a day to keep immune response down. If this doesnt hurry up and do it, I may need rituxan/rituximab infusions 4 weeks.

HSP is generally for kids under 6, I understand. My labs will probably never be normal, but we are looking for a normal for me.

My understanding is that it could be much worse. I currently have all kinds of symptoms from meds. Pain not under control. Going to try and work from home somehow and take care of myself and the family.

Let me know if you have thoughts or questions. My doctor has a hard time saying when it is in remission enough to stop the immune suppression drugs. My labs are confusing apparently.

Appreciate any comments. Is there another diagnosis you had in mind?

Thanks!

J

[Honey46311 in reply to Jessileigh]

Hi. I have Polyarteritis nodosa (PAN) diagnosed in Nov 2016. I was given 80 mg of Pred and Cyclophosphamide then tapered down to 7 1/2 of Pred and Methotrexate injection as of June 2018. Side effects from Methotrexate were exhaustion for me. Unfortunately I had a flare. My former doctor moved out of town. I have a new doctor now and she placed me back on 20 mg of Pred and switched me over to Imuran. I also just began Rituxan 2 weeks ago. I have to have 4 treatments (one infusion once a week for 4 weeks). So far it’s been good. I’m waiting to take my labs. I will say this though Acupuncture helped me hands down!!! Before she switched my meds, Two days after I had acupuncture my painful nodules disappeared. I could not believe it! I wished I would’ve done it before. I was desperate. Now I don’t need pain meds (just for flare ups). My swelling has gone down in my legs and no more occurrences of nodules (red painful spots). I attribute it to Acupuncture because it deals with nerve and arteries. I would try the Vasculitis center if that’s the closest. I would also find a reputable Acupuncturist. Hope this helps.

[jofrable]

I went to Cleveland as they have a speciality. I traveled from E PA, but have relatives in the area, so felt remiss if I didn't go for second opinion. After some mix-up in scheduling, to which the physician was very accommodating, I was seen for one visit.

She confirmed my desire to discontinue Methotrexate in any form, and affirm my continuance with prednisone of up to 10 mg. maintenance.

I am currently trying to withdraw from the prednisone, to see if symptoms recur. Have considered more closely aligning myself with their program and research, as I have had clinical symptoms which have been undefined as other sources.

[Jessileigh in reply to jofrable]

Thanks! I'm just going to stick with my plan for now. Had to quit my job. Pain is bad. I am impatient to feel better. But my case is also confusing to my doctors and I would expect the same confusion elsewhere. For today, I will rest a few hours.

Hoping you get to rest too...

[VasculitisQueen]

Go to Dr. Specks at the Mayo Clinic in Rochester MN. I live in MN and went to see him about two years ago. I have never talked to someone so knowledgeable on vasculitis. My only downside with him is that he has never had a pediatric case. He literally ran the rituximab clinical trial or something.