Clyclo & Rituxan in Australia

[katwoman]

Hello strangers, nice to be back with you all! I have had one hell of a ride with WG since last September and have a question after my long winded explanation :-)

Had been in remission and decided to use my long service leave and travel to Britain/Spain little did I suspect that after the flight I would get off the plane with swollen and painful joints that I had to deal with for the next 8 weeks, my friend called me 'hoppy' but it wasn't funny I was in so much pain and was trying to control it Imuran and codeine (I was only on Imuran and bactrim no pred) but when the purple spots raised there ugly head and I was I was in excruciating pain did I end up in a Barcelona hospital being confirmed that I was indeed having a WG flare and they weren't keen to let me leave.

Returned to Australia and my rheumy continued to try and control it with Imuran and 60mg of Pred (this did not work and I continued to progress down hill). After discussions, it was decided that it was either cyclo intravenous or Rituxan (Mabthera in Australia) as Rituxan is not on the government list I have had cyclo/pred every 3 weeks for 7 treatments now with bloods looking good but the sinus area is still bloody and crusting (but that has never changed whether in remission or not).

So here is the question, after all this cyclo treatment my rheumy has said after the 8th one next week he still considering now getting me on a sponsorship program to have rituxan infusions....is this really necessary when all bloods are good or is this is a way of keeping WG in remission? Has anyone else had experience with treatment in Australia?

love to hear from you and I hope you all are keeping as well as can be expected.
Kat

[Dirty Don]

My rheumy (I love how we begin to 'possess' them!) warned that although I am in remission there is always the 50-50 chance I will relapse, and, when that does/if it does happen, she will administer Rituxan as she deems it more effective...she's been spot on so far, so I trust her word.

[Sangye]

Kat, I'm so sorry Wegs ruined your vacation. :sad: I'm glad they were able to care for you in Barcelona. When I lived in Spain from 1991-94 I wound up in one of their ER's and am still traumatized by how I was treated!

[dennis2512]

hi my husband has wegs welive in melbourne australia being treated at boxhill hospital presently. ctx hasnt worked soo docs are applying for rtx now blood tests 2nd weekly hes wcc now 4.4. we can only get the rtx because he has been on ctx for 1 year and it hasnt helped him much jjust made him sick crissie

[mishb]

Hi Crissie,

Keep us posted on how it works out, if he gets approved or not.
I know that because it is not on our PBS, that it is very expensive indeed if not approved. I think that's how it goes.
It is not widely used in Australia yet, like it is in other Counties such as UK and USA.......but we will learn :unsure:

[katwoman]

Thank you for your responses, my next Cyclo treatment is next week which I am not looking forward to it - I also have been experiencing lower back pain for the last month, been going to physio but with no relief, could this be a reaction to the cyclo? Reason I ask is I had a case of Gout in my left ankle a few weeks ago and my ENT said it was most likely a side affect of the cyclo and so now I'm thinking that the lower back pain could also be a side affect?

I live on the mid north coast of nsw and if my doctor decides to give me rituxan, the only way I can get it free of charge is going down to newcastle (2-3 hr trip each way) and have treatment through another specialist who apparently gets some sort of sponsorship at the hospital, don't know all the details yet. Otherwise, who could afford approximately $3500 an infusion!!

Sanye, I get where you are coming from, the barcelona ER I went to majority didn't speak english and the were putting me on bags of things that I was freaking out about because I didn't know what they were giving me let alone what was going on, finally got a beautiful doctor who she spoke pretty good broken english and was so caring, I got a big dose of pred and then tablet form (as I was already on imuran) just to get me able to get home, she didn't want me to leave but wanted to send me to another hospital for cyclo treatment...no way not in a foreign country I was determined to get myself back to Australia for treatment. Believe me it was the longest flight in my life and every movement was so painful, but fortunately the airline check-in lady saw my pain and organised for me to have wheel chair assistance all the way through (as we had flight changes in dubai and bangkok) don't think I would have made it home otherwise, even with that help I was crying in pain ... think when I am better all my trips will be alot closer to my home

[Sangye]

I googled "gout cyclophosphamide" because I'd never heard of a connection. I learned that ctx can increase the levels of uric acid, which can cause gout or kidney stones. I'm wondering if your low back pain is due to kidney stones. Definitely one more reason to drink lots of water while on ctx. You have to do that when you're taking the oral form, but it seems to be a good idea to do it while you're on the IV form, since it will help to keep the uric acid levels diluted.

Gout is not just painful, it's destructive to the joints.

[Lightwarrior]

I googled "gout cyclophosphamide" because I'd never heard of a connection. I learned that ctx can increase the levels of uric acid, which can cause gout or kidney stones. I'm wondering if your low back pain is due to kidney stones. Definitely one more reason to drink lots of water while on ctx. You have to do that when you're taking the oral form, but it seems to be a good idea to do it while you're on the IV form, since it will help to keep the uric acid levels diluted.

Gout is not just painful, it's destructive to the joints.

My ex rheumy is convinced that my kidney stones is a result of all the cytoxan I had to take. I just figured that my kidneys wanted to build me a house, stone by stone (LOL)

[Sangye]

That was hilarious, LightWarrior. :laugh:

[jeniban]

It must have been scary for you to have a flare whilst overseas katwoman. I live in Newcastle and my Wegeners keeps flaring each time I reduce my Meds(Dx Dec 09) I am interested in the Drs name who you are going to see in Newcastle. I am wanting to try Rituxan as an alternative to cyclo. Which makes me feel like I am dying......:sad: Presently on Imuran and Pred, which it's too bad, but wanting to be able to maintain remission without meds. If you are in Newcastle would love you to call in for a cuppa:biggrin1:

[jola57]

Oh Kat, I am sorry your vacation turned out to be such a nightmare. This is another way how wegs is a bully, never far away, just to rear its ugly head when we least expect it. I ust learned of my hubby's friend's son who had a bad case of wegs, ended in hospital with kidney failure, spent some time being put back together then infused with rtx 2 times and is now in full remission for the past 2 years. No pain, great bloods and fully functional. But, in many it simply doesn't work as well as ctx, and, at least in Canada, first the doc must give ctx, then mtx and if they don't work,apply for approval of sponsored rtx. Only in dire medical emergency can rtx be given first. That is just how our society/governments work.

[obbie]

I am a newbe. I was finally diagonsed in June after 6 months of suffering and being told I propably have cancer. I have 3 masses in my lungs. THey are shrinking but 3 more starting. Started on Pred 60mg in June. this made a big difference to my quality of life in a very positive way. Had my first Cyclo infusion on Wed. Feel a bit weak, but still working and functioning as a human. I have a tube in one ear after loosing my hearing on one side. I give birth to what I know affectionaly refer to as small child out of my nose every 3 days. Its huge like nothing I have ever seen before, in fact I just have to stare at it a few minutes because I am still so shocked that it came from me. I am working towards remission, but am thankful to have some energy after 6 months of being the walking dead.

[Dirty Don]

Welcome obbie...glad you're fighting the good fight! Be patient and steadfast, hope you have some good docs. You sound positive, so you're already moving in the right direction. Please ask questions and share experiences & ideas on here. Everyone is responsive, and there's lots of good info available. I also suggest that you might start your own thread just so more people will see you on...sometimes mixing into another thread allows people to overlook your entries. The best to you!!

[annekat]

Welcome, Obbie,

I agree with Don... you can start a thread in the New Member Introductions section and more people will see it. The symptoms you describe sound a lot like some of mine.... the hearing loss, and big things coming out of your nose. Your description of it as like giving birth made me laugh! I hope we hear a lot more from you. A sense of humor is very welcome on here. I also had lung involvement but it wasn't described as "masses". You will find a great deal of variety in how people experience Wegs.

[pberggren1]

Welcome obbie. I am Yoda.....lol.

[greenjanet]

i know its a different condition, my mother had 8 courses of mabthera every 3 - 4 weeks through private out patients, she had no complications
and it put the lymphoma under control. janet

[Sangye]

Welcome obbie. Your description of giving birth through your nose is hilarious. Glad you found us!

[dennis2512]

hi my husbands back was aching all the time on ctx he has been off it for 4 weeks waiting for approval for rtx asap from public hosp here in melbourne.

[Lightwarrior]

I am a newbe. I was finally diagonsed in June after 6 months of suffering and being told I propably have cancer. I have 3 masses in my lungs. THey are shrinking but 3 more starting. Started on Pred 60mg in June. this made a big difference to my quality of life in a very positive way. Had my first Cyclo infusion on Wed. Feel a bit weak, but still working and functioning as a human. I have a tube in one ear after loosing my hearing on one side. I give birth to what I know affectionaly refer to as small child out of my nose every 3 days. Its huge like nothing I have ever seen before, in fact I just have to stare at it a few minutes because I am still so shocked that it came from me. I am working towards remission, but am thankful to have some energy after 6 months of being the walking dead.

Welcome and glad you found us. I know that you feel like you are giving birth....but pleas don't start naming them (LOL) You have a great sense of humor which I am convinced you need to survive this thing.

[Deanne Hull]

Hi my Name is Deanne and I am in Western Australia, I have been recommended by my specialist to undertake the infusion treatment of Rituximab in a couple of months, it has to be approved from the federal government so i don't have to pay for it. In the meantime I am on cellcept and steriods and are going to combine cellcept and methotrexate. My wegs in not bad and is coming down, the only thing i seem to be having difficulty with is the fibro myalgia that i have developed. I will let you know how that goes. Has anybody else tried this treatment? I seem to have more trouble with the meds than I do with the wegs itself. Anyway good luck with your treatment.

Kind regards Deanne

[greenjanet]

hi now there is 3 of us from melbourne janet

[greenjanet]

ive just started last april on methotrexate im now on 20mg and 10mg prenisolone thought i had RA and after more bloods diagnosed wegs ive
been ok tired put on weight keep in touch deanne

[mishb]

There's about 5 or 6 of us on here from Melbourne now Janet..........we will have enough to make a Convention soon :thumbsup:
......a big Weggie Party

Don't forget to visit the Weggie map, people, and put your location pin in

[dennis2512]

Well dennis finally got approval for mebthera from hosp treatment started last thurs. Only side effect soo far is sore lower back hasnt been able to lie flat for 6 days. 2nd treatment tomorrow. Am finally going to ask for a social worker at hosp for support am struggling with all the ups and downs of this illness.

[Col 23]

Hi Katwoman
My specialist told me it Rituxan is still trial here in WA.
Sorry to hear you have had a relapse.
Col 23