Hi
I live in Townsville in Australia and have an auto immune condition Vasculitis.
I have had Peripheral Vasculitis for two years and have a ride of symptoms and experiences. I went from working a full time hectic job to one day experiencing what they called " dropped foot" to having to stop working .
I then through many tests including lumbar punctures and MRI's and a nerve bioposy from my foot to ascertain I had severe Vasculitis.
I started on 75mg a day of Prednisone and now down to 25mg.
My neurologist had me on other medications including CellCept & Methetrexate and then a year into my treatment my Immunologist introduced ' Cyclophosphamide ' and monthly infusions IVIG which replaced the above. Prednisone remains.
They discovered I developed two fractured vertebrae and a broken rib due to the medications and so my endrocronologist arranged an infusion of ' Zomata'.
I unfortunately developed cataracts in both eyes and we reduced my Prednisone so we could operate and this was done this month. I can see again - The one positive from all of this.
Don't get me wrong I try and stay positive as if the person driving the journey isn't going in the right direction then you won't get there. I allow those bad days for sure but try and keep them few and far between.
I was feeling much better up until two weeks ago and then the lurred speech and tinglinging legs and arms have returned.
To give you an idea my current medications include:
FEB 2017 MEDICATIONS( The numbering is not correct as I deleted non Vasculitis medications).
1. Prednisone (Panafcort) - AM
1x25mg
2. Cyclophosphamide (Endoxan) - AM
1x150mg
3. Gabapentin (Nupentin)
Breakfast 300mg x 2
Lunch 300mg x 2
Dinner 300mg x 2
4. Carbamazepine (Tegretol)
Breakfast 1.5x 200mg
Lunch 1.5x 200mg
Dinner 2x200mg
6. Zoloft- AM
1x 200mg
7. Valtrex - AM
1x 500mg
13. Trimethoprim/
Sulfamethoxazole (Bactrim) - PM
160mg/800mg x 0.5
15. Endep - BED
1x10mg
16. Temazepam - BED
1x10mg
My next appointment awaits and so I'm awaiting why the sudden change and what does it mean. It's been 12 months since my last flu and influenza shot so will ensure I have those again.
I unfortunately can't work as my memory and ability to coordinate things and at times have normal cognitive ability is impaired.
I have had stroke like episodes but hey aren't strokes and they have done brain MRI's to check. They are not epileptic seizures as have had EEG's to check.
I wonder what measures improvements in this Autoimmune condition
Thanks for reading
V