Please help me....

[Mustang3336]

Hello all, I am writing this from India. I m now 40 years male.

I am In problem from 2016 and had been diagnosed as primary cns vasculitis in 2017. It took longer to diagnose and with biopsy they confirmed it's primary CNS angitis I am under treatment from AIIMS delhi . I have been on cyclophosamide from Nov 17 to Nov 18 but got relapse again n again inbetween like sever occipital headaches, nistegmuss .

In November 2018 I had relapse with right side hemiparesis.

I was shifted on rituximab and oral steroids

As soon as I come in 20mg steroid I get some symptoms.

Tried to taper steroids many times.

Again now suffered left side hemiparesis.

Please advise n guide. I am in dire need. Let me know if u need more details if my disease.

Regards.

[Nadine99]

Hello there, how much are you trying to taper the steroids? Here it appears that most people taper them very slowly. When I say slowly, I mean very very slowly. Perhaps by 1mg a month or even drop by 1mg every 2 months. It very much depends on how your system reacts. If you've had Rituximab then that is often very good for most people. Just come down on your steroids slowly but also check with your hospital consultant. Best wishes

[LyndaGould]

I was diagnosed with CNS Vasculitis in 2008 but have been in remission since 2014. It took me 3 years to come off steroids and like you I would drop to a point and then the symptoms would return. You must go slowly and there will be setbacks, but persevere. Get support from your consultant. Keep well.

[Mustang3336 in reply to LyndaGould]

Is there any institute abroad who is special for this type of disease. Please help me providing those details...

[zoe69 Moderator Volunteer Vasculitis UK]

I have a different type of vasculitis, but it took me more than 3 years to get off prednisolone.

There are two things to consider:

a) how fast you taper, slowly is the key.

and b) does the immunosuppressant keep you on medical remission?

You were on cyclophosphamide for a year. Infusions or tablets? No steroids?

Rituximab does take months to start working. Did you have 2 infusions the first month and then an infusion a couple of months later? After that it is given usually twice a year.

If you have more questions please ask and I will direct you to the helpline, you can contact them by email.

[Mustang3336 in reply to zoe69]

Yes from Nov17 to April 18 I was on endoxan every month with steroid.

Than gap of one month.

Than in July 18 I had symptoms.

Than again I was advised for endoxan every month without steroid.

But in November again I had relapse so was shifted on rituximab.

But after that whenever I weaned from steroids symptoms occurs.

Rituximab initially every week 4 doses.

Than for six month every month.

Please give me helpline no.

[Mustang3336 in reply to zoe69]

Yes from Nov17 to April 18 I was on endoxan every month with steroid.

Than gap of one month.

Than in July 18 I had symptoms.

Than again I was advised for endoxan every month without steroid.

But in November again I had relapse so was shifted on rituximab.

But after that whenever I weaned from steroids symptoms occurs.

Rituximab initially every week 4 doses.

Than for six month every month.

Please give me helpline no.

[zoe69 Moderator Volunteer Vasculitis UK in reply to Mustang3336]

I suggest that you email John Mills.

vasculitis.org.uk/helpline

[Mustang3336 in reply to zoe69]

Is there any institute abroad who is special for this type of disease. Please help me providing those details...

[Suzym2u Moderator Vasculitis UK]

Please contact John Mills he has many contacts, he maybe able to help. [e-mail]