HELP

[JoJo]

Hi my name is Jo from Australia,

My son who is 15 has just been diagnosed with Clippers. I am struggling to find somewhere in Australia to obtain further info.

His journey began with headaches in April 15, we spent 10 days in hospital in June being treated for swollen membrane over the brain. He has been on various doses of steroids since June and we found when steroids reduced to under 15mg per day it all came back.

2 weeks ago he presented again with headaches but with the added symptoms of balance issues (could barely walk) blurred vision and slurred speech. After 7 days in hospital, 3 of those in ICU we have got our son back.  We are currently on 15mg Steroid per day and reducing by 2.5mg every 2 weeks. In the meantime we are trying to get approval for a drug called Retuximab (infusion) which we hope will enable him to get off the steroids.

I suppose I'm just looking for someone to talk to that can help me understand for now and what his future may be with this disease.

Thanks for reading, Jox

[Will]

Hello Jo. Let first say I feel your confusion. Just before I got my diagnosis, I was sure I would be dead soon so I stopped brushing my teeth because I thought it was a waste of time. That was 4 years ago and needless to say I've had to restart and improve my dental care. This must be very disorienting for a young person and hard as a parent to watch. Difficulties abound.

I'm not a doctor but I'll share what I know and my story. CLIPPERS presents with wildly different signs and symptoms. The 'RS' in CLIPPERS stands for responsive to steroids. Follow your doctor's advice. If it is CLIPPERS then it will respond to steroid treatments. There are worse fates than long term steroids. I started out on a pulse therapy that was 700mg X 2 days then 550mg X 2 days I.V. repeated every 30 days for about 2 years. Expensive and required same day hospital stays for every treatment. I then transitioned to cheaper and as it turns out as effective, prednisone orally. Started at 60mg a day for 6 months then tapered. I recently tapered to 13 mg and had a relapse. Brain MRI showed new lesions in the pons. I'm tapering again slower than last time and now at 14mg per day and doing fine. This is after 4 years. I started about a year ago an adjunct drug called CellCept that is supposed to help me taper. I've not been working but I have a productive and social life. My main problems are dysarthria and ataxia. These are kept mild by exercise and stretching. While I can't ride a bicycle and I try and not let my condition stop me from participating in life. I had diplopia but the worst of it is held at bay. My vision is a bit wonky and I can not trust myself to drive at night although I do drive in the daylight.

Treatment success is as varied as the symptoms. I feel my treatment is a success. I can tolerate the drugs and their side effects. Others have reduced their steroid dose a lot more than I have. For some they have even been able to stop. One of the puzzling characteristics of CLIPPERS is how varied the symptoms, treatments and outcomes are. Some don't have the signs I do and some are worse off than me. I feel lucky.

I hope this answers some questions but it probably brings up others. The future is unknown. Love in the present. It is all we have and it feels good to love and be loved.

Will
Moscow, Idaho.

[Jo]

Hi Will,

Thank you for taking the time to read and reply to me.
I wish you all the best in the future and hope your health continues to remain stable.

We have received approval for the Infusion and hope to start this next week. I will keep you posted on the outcome and hopefully success of the treatment.

Take Care,
Jo (Australia)

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