Desperately seeking med ideas.

[crowneagle]

Alysia Weggie suggested that I post my questions here. So, here is my situation. I've got an untenable situation where every drug they try me on progresses my disease, rather than arrest it. My doctors are at their wits end. Cellcept was the worst but even Rituxan has had it bad side effects. I've also have LCV as a skin manifestation of Wegener's. So, they tried me on Colchicine but that turned out almost as bad as the Cellcept. The only drug they are offering is Imuran but it scares me to death that it will be like the others. Cytoxan is the only drug that put me in a short remission. But, you know the long term risks of that.

Has anybody ever used Arava or Gusperimus(DSG)? These are two drugs the doctors haven't mentioned to me. Has anybody ever had a drug make their disease worse?

[annekat]

Many of us have taken Cytoxan for long periods of time because it was the best thing available before RTX was approved and commonly used, and it is known for usually working faster than RTX. They can be taken together. If you are doing infusions of the CTX, you might need more than one, just like you do with RTX. With oral pills, we just keep taking them, for 3-6 months or more, in much lower daily doses than the infusions, and drink LOTS of water. It worked for me. I know you've heard my two cents worth and sincerely hope others can shed some light on other approaches. Especially those with CNS involvement or other more unusual and hard to treat scenarios.

I certainly do remember cases on here where meds haven't worked as expected, or have made things worse, and hope those people will chime in. I've heard of Arava but not the other one you mentioned.

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[vdub]

There's certainly no harm in asking your doctor about DSG. It looks as if it has been approved in Europe for use against GPA.
https://en.wikipedia.org/wiki/Gusperimus

[LaurenGoodwin]

hi! im semi new to WG and this forum but i currently take methotextrate as for inflammation this is working great and my numbers are almost back to normal, i haven't hit remission yet but hopefully! just wanted to mention another drug.

[crowneagle]

Many of us have taken Cytoxan for long periods of time because it was the best thing available before RTX was approved and commonly used, and it is known for usually working faster than RTX. They can be taken together. If you are doing infusions of the CTX, you might need more than one, just like you do with RTX. With oral pills, we just keep taking them, for 3-6 months or more, in much lower daily doses than the infusions, and drink LOTS of water. It worked for me. I know you've heard my two cents worth and sincerely hope others can shed some light on other approaches. Especially those with CNS involvement or other more unusual and hard to treat scenarios.

I certainly do remember cases on here where meds haven't worked as expected, or have made things worse, and hope those people will chime in. I've heard of Arava but not the other one you mentioned.

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Thanks Anne. Miss you. I am seriously thinking about another round of Cytoxan. I have to call my doctor today after she left me a message yesterday. First, I'm fully exploring what fisetin can do for me. I've also heard that Cytoxan using pulse therapy is the safest way to take it. My kidneys are spitting out red blood cells and I'm suppose to be getting a ct scan of my bladder and kidneys soon.

[crowneagle]

Unfortunately, mtx isn't recommended for weggies with cns issues as the presenting feature. At least, that's how I remember it.

[crowneagle]

I'm not sure if it's still being used or not. I've read that it's been withdrawn but even that info is old. Anyways,it doesn't appear to be available in the USA. I've had some good effects from Fisetin. It has some similar qualities of DSG.

[annekat]

Thanks Anne. Miss you. I am seriously thinking about another round of Cytoxan. I have to call my doctor today after she left me a message yesterday. First, I'm fully exploring what fisetin can do for me. I've also heard that Cytoxan using pulse therapy is the safest way to take it. My kidneys are spitting out red blood cells and I'm suppose to be getting a ct scan of my bladder and kidneys soon.
Thanks, Tom. I was feeling a little bad about going into my oral CTX spiel again, though I know some people's WG specialists prefer that route for some reason. But I already knew what your conclusion is and that you are a special case. As for fisetin, I'm not sure I've ever seen it mentioned on this forum, and it sounds like it warrants further discussion. I miss you, too.

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[Alysia]

Hey Tom,

Rtx might take 2 rounds until you can see significant improvement. You can be on both rtx and ctx. My beautiful Phil was on both for some time.

Over the years my wg dr. Tried on me: plaquenil (didnt do anything), Imuran (I couldnt bear), mtx (didnt do anything but hair falling). He also suggested arava/ leflunomide which was the option if rtx wouldnt have worked (thankfuly it did) and lately cellcept, which I refused so far.
He also mentioned new biological med which I cant remember its name. He explained to me that one cant be on 2 biological meds at the same time. He preffer that I will not be only on rtx as it seems to him not enough right now.
He also explained that researches found that bactrim/ sulfa can help weggies eventhough its just an antibiotics. I was on it without other meds but pred for a year and it worked fine on my wg until it elavated my liver enzymes and I had to quit it. If I remember right me2 wrote something about it... ??
My wg dr also said that Igiv in itself can be a treatment for wg.
And if you ask me, my fav is my pred... but I know you dont like it as much as I do... :)
Keep on fighting, Tom. We love you and pray for you. Please update us.

[dboyer]

hi! im semi new to WG and this forum but i currently take methotextrate as for inflammation this is working great and my numbers are almost back to normal, i haven't hit remission yet but hopefully! just wanted to mention another drug.
Lauren Ny name is Darrell Boyer and I have had weggy for 7 years. It attacked my lungs but my remotogist pulled my out and I to have taken all the drugs you have mentioned. I got off prednisone about 1 year ago. I took it for 5 years. My problem is skin infections and hard to heal even antibiotics. Does any of this sound familer? I am A senior and struggle with this format my email is dboyer77380 at hotmail.com Thanks

VW: Altered e-m address to save Darrell from the search engines....

[Alysia]

Lauren Ny name is Darrell Boyer and I have had weggy for 7 years. It attacked my lungs but my remotogist pulled my out and I to have taken all the drugs you have mentioned. I got off prednisone about 1 year ago. I took it for 5 years. My problem is skin infections and hard to heal even antibiotics. Does any of this sound familer? I am A senior and struggle with this format my email is dboyer77380 at hotmail.com Thanks

VW: Altered e-m address to save Darrell from the search engines....

Hi Darrell, not sure your post here can get enough attention with your question about the skin problems. I dont have any so cant help with that. Try to post a new thread: go to the forum page. On the third bar, under "Wegener's talk" press on "general wg chat". On the top you will see : post new thread. Press it. Give a title with your question and write it down. Good luck!

[marta]

Alysia Weggie suggested that I post my questions here. So, here is my situation. I've got an untenable situation where every drug they try me on progresses my disease, rather than arrest it. My doctors are at their wits end. Cellcept was the worst but even Rituxan has had it bad side effects. I've also have LCV as a skin manifestation of Wegener's. So, they tried me on Colchicine but that turned out almost as bad as the Cellcept. The only drug they are offering is Imuran but it scares me to death that it will be like the others. Cytoxan is the only drug that put me in a short remission. But, you know the long term risks of that.

Has anybody ever used Arava or Gusperimus(DSG)? These are two drugs the doctors haven't mentioned to me. Has anybody ever had a drug make their disease worse?

Sounds like you've had a rough go with this lovely little disease. Have they attempted plasmapheresis? I know this is big go, but it's not drug related, so it might affect you differently, and get the ball rolling on the healing process. How long were you on Cytoxin? I was on it (oral - with lots of water to keep the kidneys and bladder safe of course) for a year, and it was certainly what nixed my initial onset. Rituxin has worked for me, I've had it three times (two infusions each time) but it does take a little while to kick in and do it's magic, and there is potential for lots of negative side effects, but that's where the risk-benefit assessment lives, and must be discussed with your doctor (who I hope is a vasculitis pro, otherwise they tend to grasp at straws using us as their guinea pigs.) Your B-cells are gone within a week with RTX, but the symptoms don't disappear that fast. It takes a month or two to start to feel the benefit. As for Imuran, I have been on it for years, and much prefer it to methotrexate. I have absolutely no side effects from it. Not one. The only issue is if you are missing the enzyme necessary to metabolize it. A small percentage of people don't have it. There is a blood test to check that out, not where I live though, so the first couple of weeks were anxious for me hoping that this one will work. I think the trick is to knock the disease off course with the big guns (CTX or RTX or worst case scenario plasmapheresis) then do the maintenance with the milder immune suppressants. I think weaning off the steroids too aggressively can also trigger a flare, so that's an element that has to be followed cautiously and slowly to avoid a flare. From what I've read, it is harder to control the disease with each subsequent flare, so keeping them to a minimum is very important.

[crowneagle]

Thanks Marta. Sorry it took so long to get back to you. The plasma exchange is out for me for the time being because I was told they wouldn't do it, unless I was in desperate shape. I've had very bad reactions to most of the drugs they tried on me with Cellcept and Cholchicine even advancing my disease. That's my primary dilemma. They told me at the vascultis center in Boston that I'm running out of options. Imuran is the last drug to try but I've been holding off just to see what my second round of RTX would do. Then, there is my fear that Imuran will treat me badly like the other drugs did. I am going to talk to my doctor about another round of CTX.

[marta]

Thanks Marta. Sorry it took so long to get back to you. The plasma exchange is out for me for the time being because I was told they wouldn't do it, unless I was in desperate shape. I've had very bad reactions to most of the drugs they tried on me with Cellcept and Cholchicine even advancing my disease. That's my primary dilemma. They told me at the vascultis center in Boston that I'm running out of options. Imuran is the last drug to try but I've been holding off just to see what my second round of RTX would do. Then, there is my fear that Imuran will treat me badly like the other drugs did. I am going to talk to my doctor about another round of CTX.


Man that's just messed up on the plasma exchange. So they have something that will knock this back but won't do it until you're too sick. There's gotta be a good reason they hold this one back. I wonder if there is a high risk of something bad happening.

My dad reacted very poorly to Cellcept as well as a few other people I know that have other autoimmune diseases. I have heard very few stories with it being successful. Maybe that's the bugger, Cellcept.

Imuran worked great for me, and on my second last RTX infusion (2012) I was taking it while and continuously after the actual infusion dates. My gut feeling is you might have to hit this hard, since not only is it not responding but is getting worse. Imuran alone though is only maintenance, I don't think it has the ability to knock down a full blown flare. There are only the two options for a full blown flare - the big guns - RTX and CTX. I think you should ask your docs if they might consider RTX and Imuran simultaneously and then stay on the Imuran as maintenance (assuming you can metabolize it, the majority of the population can.) I don't know if you want to be doubling up on the RTX and CTX either, to me that seems more last ditch effort than plasma exchange. Keep in mind that once you have an RTX treatment, you have ablated most of your B-cells. It takes 6-8 months for your body to build a new B-cell army, so that's how long you're compromised from the treatment. I think combining RTX and CTX could potentially really mess up your ability to fight off any little thing, and that might be a whole different scary thing you'll have to worry about.

My disclaimer though: I have no idea. I'm just typing instinctual hypothesis based on my own experience, so take everything I say with a grain of salt, cuz my body is different than yours, and they deal with treatment differently and manifest the disease differently. My musing is just points to consider and trash if needed. ;)

Peace,
m