Taking Prednisone for severe Vasculitis - 75mg every day

Heart health and blood vessels
1

Hi

I am new to 'patient'and very interested to learn if anyone is on a high dosage of prednisone as I am having to take for ' severe vasculitis'.

I take in conjunction with this once a week Methetrexate 15mg.

My affected areas include right foot, right leg and arm. At the moment it is only affecting the right side of my body.

My neurologist has decreased prednisone from 75mg to 62.5mg and now 50mg,whilst increasing MTX from initial dosage of 2.5mg once a week to 5mg and now 15mg.

I am interested if anyone has similar experience as patient or professional reading these forums please.

I have the side effects mentioned by many that include: side effects Feeling feverish, loss of appetite, mouth ulcers, drop foot like symptoms, difficulty coordination.

I would really appreciate any insights into increasing MTX decrease prednisone. From what I read my dosage is high so no surprise to suffer the side effects.

Thank you all for any knowledge - I have been reading all the wonderful fact sheets on this website.

2

Hi Ron

Where are you based?

I have had WG for 15 years with 4 flare ups so far.Last flare up was June 2014, got pyoderma gangrenosum (hard to heal ulcer) as spin off. Got put on 60 mg of Pred for 6 months. I transferred to Addenbrookes Vasculitus Centre (UK) they want me off Preds and I'm on course of Retuximab infusions to help me get off Preds. Hope this helps. Dave

3

Hi Dave

Thank you so much for your prompt reply and update it is greatly appreciated.

Unfortunately I am based outside of the UK but going to go onto the website of the treatment centre you are currently being taken care at to find our some more.

I appreciate your help - did you have to take a Sparing Agentike Methetrexate as well ?

Thanks

Veronic

4

I was diagnosed with PAN 30yeras ago andsince have now been diagnosed with wegeners (GPA).....I have worked in the petrochemicals / oil & gas industry all my life....when I was in remission with PAN I never thought that I would relaspe into something similar but slightly different......anyway I was started on 60mgs of pred and rituximab infusion, since then (18months ago) I am now down to 12.5mgs pred and 150mgs of imuran, but since May 2015 I cannot reduce down to 10mgs of pred without symptoms returning i have been on another dose of rituximab.......hey ho hopefully this will work and let me get of the pred.....

5

Hi Phil

Really appreciate your reply and update it helps and let's me understand things better.

Hope your feeling OK

V