Vasculitis - Things are happening!

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Hi - just attended Vasculitis conference in London at weekend. News us that there has never been so much research into Vasculitis as is happening now. There are a number of aternatives to Predisolone if you are out of remission and you can talk to your GP or contact Vasculitis UK and they can help

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  • Posted

    Hello Dave

    could you share what the other alternatives for Vasculitis other than Prednisolone.. Doctors now think I have vasculitis not just chronic urticaria.  He mentioned urticaria Vasculitis.  Is that the same or is vasculitis concerns ones organs?

    thank you

    wendy

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    • Posted

      Hello Wendy

      I attend the Vasculitus Clinic at Addenbrookes and they are very keen to reduce the use of steroids. I have six monthly infusions of Retuximab (takes 6-7 hours for the Infusion) and this has enabled me to reduce Predisalone dramatically

      Hope this helps?

      Best

      Dave

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    • Posted

      Hello Dave

      I am in the US and have suffered with Chronic Urticaria for 15 months now and doctor feel that he cannot rule out urticaria Vasculitis.  I have been on cyclosporine for over 2 months and now up to 200mg not getting rid of hives so he added 20 mg taper of prednisone and I'm on day 3 of that and still have hives.  A lot also in my scalp back of neck and arms....legs have improved a little.  So upsetting.  Cannot get appointment to see Vasculitis Doctor until Nov 24!  That's a long time to wait for getting help!

      What is Retuximab?  Takes 6-7 hours??  Is it through IV?  What are side effects. Tried Xolair shots only worked the first week or so then stopped.  I'm losing a lot of hair which is very upsetting as well not sure what that is from...horrible disease!  Would love to treat this naturally!

      look forward to hearing from you.

      thank you

      Wendy

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    • Posted

      Hello Wendy,

       I have continuous chronic urticarial vasculitis.

      My first attack was in 2005 but it did not become continuous chronic UV

       until 2012. I am on a high dose of prednisolne

      After researching UV treatment on the internet I found many stories

       from fellow chronic UV suffers and the treatments they were using.

      60 mg of prednisone per day was very common with some patients

       prescribed up to 100 mg per day. The dosage my doctor & I developed

      that works for me is 80 to 100 mg for the first 8 days and then follow the

      Dermatology Associates of Wisconsin, S.C. 12 day prednisone taper

      to zero dosage. After this I try to go as long as possible until the 

      returned UV rash becomes unbearably itchy and then I commence

      the prednisone treatment as previously described above.

      During this 6 week period ( approximately wink I experience the effects 

      of the prednisone which I tolerate because it’s better then

      the nightmarish itching of the Chronic UV.

      After a bad reaction to Plaquenil which didn’t have any effect

      on my CCUV I am now looking at other drugs such as 

      Methotrexate 

      Cyclosporin 

      Dapsone

      Omalizumab ..Xolair

      I would be very interested to hear of your experience & opinion

      with any alternatves to Predisolne.

      Cheers,

      Paul

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    • Posted

      Hello Dave,

       I have continuous chronic urticarial vasculitis.

      My first attack was in 2005 but it did not become continuous chronic UV

      until 2012. I am on a high dose of prednisolne

      After researching UV treatment on the internet I found many stories

      from fellow chronic UV suffers and the treatments they were using. 

      60 mg of prednisone per day was very common with some patients

       prescribed up to 100 mg per day.  

      The dosage my doctor & I developed that works for me is 80 to 100 mg

       for the first 8 days and then follow the 

      Dermatology Associates of Wisconsin, S.C. 12 day prednisone taper to zero dosage. 

      After this I try to go as long as possible until the returned UV rash

       becomes unbearably itchy and then I commence the 

      prednisone treatment as previously described above.

      During this 6 week period ( approximately wink I experience 

      the effects of the prednisone which I tolerate 

      because it’s better then the nightmarish itching of the Chronic UV.

      After a bad reaction to Plaquenil which didn’t have any effect on my CCUV

       I am now looking at other drugs such as 

      Methotrexate 

      Cyclosporin 

      Dapsone

      Omalizumab ..Xolair 

      I would be very interested to hear of your experience & opinion 

      with any alternatves to Predisolne. 

      Cheers,

      Paul

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    • Posted

      Hi Paul 

      I am based in Sydney Australia and was diagnosed with severe vasculitis two years ago.

      i started with 75mg of Prednisone, Methotrexate once a week and another drug called Cellcept. 

      In April this year the Immunolgist was involved working with my Neurologist and we commenced a monthly infusion of plasma its know as IVIG treatment. In conjunction to this I take daily (150mg) of drug called Cyclophosomide. I also did an IV of this and Methyl Prednisone at the beginning.

      This has been helping me as when I was on such a high dosage of Prednisone I felt so different.

      I hope this assists you

      Roni 

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    • Posted

      Hi Roni,

      Thank you for your very helpful reply.

      You mentioned “ monthly infusion of plasma its know as IVIG treatment “

       Is this the same as “ IV immunoglobulin “ ?

      I read in your other correspondence with Dave that he gave you

      “ medical centers in Australia that specialise in Vasculitus “.

      Have you attended Concord Repatriation General Hospital

       or John Hunter Hospital and if so what is the name of their Vasculitus 

      Departments as I have had difficulty contacting them ?

      My experience with Dermatologists in Australia has been very 

      disappointing so I am continually searching for some one who is

      knowledgeable in the Vasculitus field.

      Cheers,

      Paul

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    • Posted

      Hi Rocky

      I do have RA but I was given Retuximab in connection with Wegeners. - it's used to help taper off the use of Prednisolone.Retuximab was mainly used for cancer treatment (it kills the B cells)

      Hope this helps?

      Dave

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  • Posted

    Thanks for this update - do you know if they have contacts in Australia
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    • Posted

      Hi Ron

      Following medical centers in Australia specialise in Vasculitus - does this help? Not aware of a support charity like Vasculitus UK in Australia

      Austin Hospital

      Austin Hospital, Heidelberg, Victoria, Australia.  

      Concord Repatriation General Hospital

      Concord Repatriation General Hospital, Concord, New South Wales, Australia.  .

      Flinders Medical Centre

      Flinders Medical Centre, Adelaide, South Australia.  

      Fremantle Hospital

      Fremantle Hospital, Fremantle, Western Australia  .

      John Hunter Hospital

      John Hunter Hospital, New Lambton Heights, New South Wales, Australia.  .

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    • Posted

      Thanks Dave so much for this information

      If you receive any links or updates from conference would appreoiatevto learn more.

      I have reduced prednisone from 75mg per day to now 45mg and still take once a week methotrexate and now they have added Cellcept twice a day X 2 tablets

      My severe Vasculitis diagnosis was made in March this year so early days and they don't know how long I shall be on these treatment or if it can go into remission.

      The Main thing for me it to keep it contained to the right leg and arm.

      Thank you again for your assistance and infoewmtion. Do you know when the next Vasculitis conference is being held and where and I presume you don't have to be a Dr to attend some of the sessions or is it mainly for the medical professionals.

      Have a lovely Xmas

      V

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    • Posted

      Hi Roni45

      Fingers crossed for you. Have you joined Vasculitus UK? That's the best place to keep up to date with whats going on. They have s website full of information.

      Happy Christmas!

      Dave

      Emis Moderator comment: There is a link to Vasculitis UK in the right sidebar of this page.

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    • Posted

      Hello Ron

      Good to hear from you. I was actually in Addenbrookes Hospital (Vasculitis Centre of Excellence) on Friday having an infusion of Retuximab. My consultant has put me on these six monthly infusions to help me taper off the use of Prednisolone. I believe that's it's becoming widespread so worth asking your doc

      Good luck!

      Dave

      .

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