Vasculitis flares

[Lauriescott1]

I have been suffering a number of flares which have in the past been treated by an increase in steroids however last weekend I suffered a bad one resulting in a bad, red, angry looking skin rash rendering me unable to walk.

I am due to discuss something newly proposed tomorrow which involved a weekly drip infusion over 4 weeks to get back on top of it.

I believe it sounded like Rutimax & wondered whether anyone else had heard of this or currently had this as apparently it's only recently been sanctioned by the NHS as well

[Hidden]

Hi,

You don't say what type of Vasculitis you have. If it's an ANCA associated Vasculitis then steroids will never put it into remission on their own.

Rituximab is usually given as 2 doses 2 weeks apart for Vasculitis but that doesn't mean that it isn't Rituximab that your Consultants are proposing. It has been sanctioned by NICE for at least 2 years now.

Do you see a Consultant with experience in Vasculitis?

[gilders in reply to Hidden]

The dosing for Wegener's Granulomatosis/GPA is 4 doses (1 every week for 4 weeks).

I'm currently on the Ritazarem trial, so after my initial 4 doses, I have a "top up" maintenance dose every 4th month.

I've been happy with Rituximab as far as getting Wegeners into remission. But it hasn't prevented further renal failure. I'm now in process of a kidney transplant.

[Hidden in reply to gilders]

The dose for the trial is probably different than the standard dosing regime. Most patients get 2 doses 2 weeks apart outside of trials and the specialist centres.

[Lauriescott1 in reply to gilders]

Thanks for your reply - Yeah I'm about to have the 4 doses.

Sorry to hear that you are in the process of a kidney transplant - Thankfully my kidney functions are holding up well at the moment.

[Lauriescott1 in reply to Hidden]

Thanks for your reply - I have Wengeners Vasculitis diagnosed in 2013 & following recent flares they have now increased Prednisone to 60mgs daily but I've been discussing a Rituximab infusion that is planned next week (then weekly for the next 3 months) as my Consultant is concerned at the long term effect of increasing the steroids and wants to get back on top of this without resorting back to Cyclophosphamide.

[Michelle_Cheatley in reply to Hidden]

Have you ever had your Homocysteine levels checked. ?

[Lauriescott1 in reply to Michelle_Cheatley]

Thanks Michelle for flagging this - No I've not aware that this has been specifically checked but I'm thankful to have a very knowledgable Consultant who undertakes regular blood tests/ monitoring.

[gilders]

Hi. The drug is Rituximab. It is one of the more powerful drugs, but fortunately, is less toxic than some of the older drugs, such as Cyclophosphamide.

If your dr is happy to pay for it then that's great. My local hospital didn't offer it me (even when I mentioned about it), so I travel a 330 mile round trip to Cambridge for my infusions.

[Lauriescott1]

Thanks for reply - It seems that my Consultant is planning 4 weekly infusions coupled with a Prednisone increase, short term, to try & get back on top of it after recent flares having previously been in "remission" for 3 years after diagnosis in 2013.

[cedric]

i have a flare going on at the moment increased steroids i have cryglobnanemia got to go back to hospital in a weeks time to see what he as got to say

[Lauriescott1 in reply to cedric]

Hope all goes well & you're back on track soon

[cedric]

thank u lauriescott

[Keithtim10]

Hi Laurie i had first Rituximab at Xmas and i will be having second bout of it in June and at this point it has worked for me this was following a Flare or relapse whichever you wish to cal it.All i found with the drug is some tiredness and it takes quite a few hours to go in but the end result was much improved blood results.Good luck and hope this helped.

[Lauriescott1 in reply to Keithtim10]

Thanks for your reply - Sounds encouraging

[Lauriescott1 in reply to Lauriescott1]

Will do

[Keithtim10]

No Problems Laurie stay positive.Let me know how you go on.

[Lauriescott1 in reply to Keithtim10]

Will do

[Keithtim10 in reply to Lauriescott1]

Ok Luarie by the way whereabouts are you UK or somwhere else?

[Lauriescott1]

Keith I'm in Hextable, Kent & under Jonathan Kwan @ Darent Valley Hospital