Vasculitis

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

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6 Replies

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  • My daughter developed Vasculitis at the age of 28. It has been 10 years now and it doesn't seem to be getting better. She has pain in her lower legs and feet. She is in bed most of the time with ice packs under her feet to ease the pain. If you would like to talk to me please do. I would like to encourage you in this difficult journey.

  • Thank you. I have seeing a Neurologist and Immunologist who work together has helped my treatment immensely. The introduction of IVIG treatments every month is wonderful. My Cortisteriods are being decreased and my Cyclophosphamide is being finished by April so would have been on that for 12 months.

    I tell the Dr my symptoms and I keep on ensuring I ask many questions.

  • I believe there us a support organisation in Australia I will see if I can locate the details

  • Thanks I would love to join a support group for Australia as haven't found one

  • I have tried to contact David, I will keep trying. 😊

  • Can you contact John Mills John.mills@vasculitis.org.uk

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