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margaret
08-21-2009, 01:58 AM
Hi All,

My 18yo brother was diagnosed with WG back in April and has been in the hospital pretty consistently since then. In April his doctors started him on oral cytoxan & prednisone. This was only supposed to take 3-6mo to help him get better, but in reality it didn't help stabalize the disease at all. Well, it did help his lungs, but every other part of him worsened. Besides the fact that it made him intolerably nauseated (he lost loads of weight), his kidneys worsened on that regime. He was switched to IV cytoxan which caused the disease to reactivate in his lungs (he's already had some severe hemmoraging which necessitated 4wks of ventilation under heavy sedation).

Our parents (who are both doctors), have moved him from home to the Mayo Clinic in S'dale, AZ. The doctors here are consulting with those in Rochester along with some doctors at Johns Hopkins. They've also consulted with the Cleveland Clinic.

The consensus right now is to put him on Ritixumab after he completes 5 days plasmapheresis. This will be his 3rd round of plasmapheresis, in the past its helped his kidneys & lungs for a short time. From what they've said, Ritixumab a good drug for those who dont respond well to cytoxan.

Does anyone have any experience with it? I'll take both good & bad - seems like every treatment he's been offered has been the one to help get him to remission (of course, that hasn't happened).

Thanks!

Sangye
08-21-2009, 03:54 AM
Hi Margaret,
Welcome to the group. I'm sorry to hear what your brother is going through. So young, too. I used to go to Mayo AZ (after more than a year of awful local docs). I'm VERY happy to see they're consulting VF specialists, because there's no Wegs specialist there. Dr Mazlumzadeh sees Wegs, but not all day every day, like the VF docs. He was my rheumy and was way better than my local docs. I didn't realize how much he didn't know until I got to Hopkins.

I haven't had rituximab myself. I've heard great things about it, though.

As far as getting to remission, it's not as easy or as likely as you'd think. Wegener's treatment is like a spectrum, with active disease at one end and no drugs or symptoms ("full" remission) at the other. Many people have to remain on drugs indefinitely to maintain a remission, and many go off and on them. Fortunately, there are newer, less toxic drugs that make that possible.

With Wegs, nothing is written in stone. You can slide anywhere along the spectrum at any time. It has a mind of its own, that's for sure.

Jack
08-21-2009, 06:07 AM
Hi,
Sorry to hear that your brother is having such a hard time, but these are very early days in his treatment. Knowledge is improving all the time, but in my own case, although they brought my condition under control in a matter of days, it took several years to establish a regime that would maintain remision without being too toxic. This was nearly 25 years ago. I think there is a move these days to treat the disease less agressively - I'm not sure if this is a good thing or not.

Martin Thomas
08-21-2009, 07:12 PM
Rituximab was a literal life-saver for me. All the conventional treatments failed including cyclophos. At a recent consultation with the infamous Dr David Jayne at Addenbrooke's Hospital here in the UK he suggested that they are finding it can take up to 18 months for the drug to work fully although initial successes do occur much more quickly (about 3 months in my case).

They have changed their regime a number of times over the last 3 years in accordance with their results and their current practice is here (http://www.cuh.org.uk/resources/pdf/patient_information_leaflets/PIN1090_rituximab.pdf). In my case and with many others it's now administered in 5 doses over 2 years (i.e. every 6 months). After the initial dose which may be spread over 2-4 weeks the remaining doses are usually given in a single session and administered irrespective of B cell levels.

The great thing about Rituximab for me (apart from the fact it works!) is that it had no side effects what so ever. I have heard of rare cases of patients being adversely affected but it's so much safe and not damaging like other chemo. and steroid treatments.

Gary
08-21-2009, 07:18 PM
Hello Margaret, soryy to hear about your brother. As everyone says, it has a mind of it's own but, thing do get better over time. welcome to the group.:)

margaret
08-21-2009, 10:54 PM
Thanks everyone... we're hoping he'll have some sort of success with the Rituximab, even if it means he's able to be out of the hospital for more than just a week. When he was first diagnosed, the docs (including those at Cleveland) all told us that the cytoxan/pred treatment had never failed for any of their patients. After talking to the docs at Mayo, we're seeing that cytoxan doesn't work for everyone. In my brother's case, the cytoxan helped his lungs, but it did not help his kidneys which were failing rapidly. We know that the rituximab treatment is fairly new and that we've got to play this game on a day to day basis, but we're still hopeful.

It looks like the plan for now is to keep him on some heavy steriods, do 5-7 plasmapheresis treatments and then start the rituximab. He'll do the rituximab infusions once a week for 4wks. Hopefully he'll be able to go back home to TX late next week after his first infusion and then return to AZ for a follow up in a month.

The docs here are consulting with Dr. Specks in Rochester, MN - anyone seen him before? He seems to be the one really working on rituximab treatments...

Thanks again.

Sangye
08-21-2009, 11:43 PM
Martin, thank you for that info on Rituximab! Maybe Andrew can make the attachment a "sticky."

Since it takes so long for it to fully work, what do they do meanwhile for treatment?

I'm currently back on ctx (no pred) for a flare. My doc plans on using it for 3-6 months max, then switching back to Cellcept. I was on Cellcept and tolerated it very well. I'd felt for several months that we needed to increase the dose. Once we finally did, it didn't kick in fast enough to stop the flare. My doc thinks the higher dose will work fine for me after the ctx, but he's researching if my insurance will cover ritux, also.

I read on the attachment that ritux interferes with coumadin. I'm on coumadin for life, so I wonder if it's even possible for me to use it.

Doug
08-22-2009, 01:57 PM
Yes, thanks for the attachment, Martin. It was very informative. Though I don't have immediate need to know about it, it's good to have prior knowledge of what's taking place in treatments these days in case I need to know about it come a flare.:(

Cindy M
08-23-2009, 12:28 PM
Wow Martin, thanks for that info. I just finished my second round of Retuximab and have been searching to see how long it takes before it fully works. It's longer than I was hoping for but at least I know have a time line in which to work with. I have previously been on Methatrexate, and now I am on preds (80 mg) cyclo (125 mg) and the Retuximab.

Cindy M
08-23-2009, 12:30 PM
Hi Margaret, sorry to hear about your brother. This disease is like no other, I find myself up one day and down another. I have just finished my second round of Retuximab on thursday. I have tried methatrexate but that did not work for me, I am also on cyclo and preds. I hope this works for your brother.

Martin Thomas
08-23-2009, 06:57 PM
@Cindy M That's quite a big-hit regime. Do you know whether the plan is to drop the cyclophos in the near future once the Rituximab has depleted the B-cells?

Sangye
08-23-2009, 11:52 PM
I agree. Personally I've never heard of ctx being along with with ritux.

When I was going to switch from Cellcept to ctx for this flare, I asked my Wegs doc if I should transition off the Cellcept slowly, since it takes a month for the ctx to work fully. He almost leaped across the room as he said, "NO!!!!" Cellcept also depletes B cells (different mechanism from ritux though) and he said the combo would be deadly.

Cindy M
08-24-2009, 03:59 AM
No, I'm not sure what the plan is. All I know is that I had quite the flare up in July when I started to lower the preds. They decided to try another avenue since it seemed liked the cyclo was not working well without the preds. I just hope that something works, I am getting tired of popping all these pills.

Cindy M
08-24-2009, 04:02 AM
Hi Sangye, I still have not figured out all of your abbreviations. CTX is that cyclophosamide, and is that what you have not heard of being given at the same time as the rituxan. What is cellcept?

Jack
08-24-2009, 04:43 AM
CTX is cyclophosphamide in all but name.
Cellcept is another imunosupressant, but much less agressive and toxic.

As far as popping lots of pills, I'm afraid it is just a way of life for most of us. :(

Sangye
08-24-2009, 06:12 AM
Cindy, sorry about the abbreviations! We all use them, so here they are :

Cyclophosphamide/ Cytoxan : cyclo, ctx

Methotrexate : mtx

Prednisone : pred

Diagnosis/ Diagnosed : Dx/ Dx'ed

Wegener's : Wegs, WG

Cellcept is an immunosuppressant often given to recipients of kidney transplants for life. Since it's a daily oral dose, it's easier to control than rituximab. Both are fairly new in Wegs treatment, and as far as I know they've had about equal success.

Please do me a favor and double check with your doc that you're supposed to stay on ctx along with the rituximab. It's so easy to miss information in our many doctor visits and I don't want you to be hurt.

Davey55
09-06-2009, 02:25 AM
Hi everyone,

I am a major success story for Rituximab and highly recommend pursuing this treatment to any WG sufferers. I had a very severe rapid onset case mainly involving kidney's, lungs, and nose. After a week of continual worsening kidney function following high dose prednisone and cytoxan administration, Rituximab was discussed and ultimately administered the following week. After reading up on it and the theory behind the drug, one can see how awesome and powerful it is. The drug flags CD-20 B-cells (the specific white blood cells implicated in WG causation) for deletion by normal White Blood cells. The drug is specific enough to only target and attach itself to these CD-20 B-cells so minimal or no side effects (as I can testify to in my case) are typically observed. Once these CD-20 B-cells are destroyed, new ones populate from stem cells. Obviously there is a huge cost in the production of this highly engineered drug, but I really believe it is the right strategy in Wegener's treatment. I often tell people I owe my life to it. The fact that I have maintained full medical remission for over 2 years now from a highly aggressive case is amazing to me. I give Rituximab my absolute highest recommendation and urge all WG sufferers to pursue it.

Sangye
09-06-2009, 02:31 AM
That's awesome! The ctx and pred never really worked for me the first time and left me incredibly weak. I've never recovered. Being back on ctx now (and 5 mg or less pred) is doing the same-- weakening me further. I hope I get to use ritux and that it works like that for me!

margaret
09-06-2009, 02:21 PM
Davey - do you remember what your ritux regime was? I believe my brother is getting 1 infusuion/wk for 4wks, after that I'm not sure what the plan is. I know he's still on lots of pred (60mg?)... and in the hospital now for an infected picc line and a partially collapsed lung. If its not one thing with this kid, its another...

Sangye
09-06-2009, 11:03 PM
Margaret, I'm sorry your brother is still in such bad shape. Those are serious complications. Wegs is a horrible, horrible disease. I usually just use one "horrible" but reading that news today justified an extra. I hope he turns the corner soon. :)

margaret
09-07-2009, 01:55 AM
Margaret, I'm sorry your brother is still in such bad shape. Those are serious complications. Wegs is a horrible, horrible disease. I usually just use one "horrible" but reading that news today justified an extra. I hope he turns the corner soon. :)

Thanks Sangye... he's getting a chest tube today for the bum lung, and the antibiotics have already started kicking in for the infection, so he's already feeling better. Hopefully he'll be able to go home soon...

Sangye
09-07-2009, 02:10 AM
I've heard chest tubes are incredibly painful. I hope it goes quickly and easily for him. Glad to hear the antibiotics are on it!

Jack
09-07-2009, 02:17 AM
My daughter had them on several occasions when she had collapsed lungs and the general surgeon who did the first one messed up and put it in the wrong place! It was not until she came under the care of the Pulmonary specialists that she was sorted out properly. Another lesson in only trusting specialists. :mad:

margaret
09-07-2009, 02:23 AM
I've heard chest tubes are incredibly painful. I hope it goes quickly and easily for him. Glad to hear the antibiotics are on it!

I guess the procedure itself wasn't terrible - more "creepy" than anything since his face was covered and he knew they were poking a hole between his ribs. He said the pain came afterwards and he can't move his left arm yet... but he's texting me, so thats always a good sign.

margaret
09-07-2009, 02:25 AM
My daughter had them on several occasions when she had collapsed lungs and the general surgeon who did the first one messed up and put it in the wrong place! It was not until she came under the care of the Pulmonary specialists that she was sorted out properly. Another lesson in only trusting specialists. :mad:

Yikes! I guess this is our advantage in that our mother is a doc... she was able to get a pulmonary surgeon to come in on a Sunday to get this done... I hope your daughter is okay now.

Jack
09-07-2009, 03:33 AM
Thanks. :)
She still has a few twinges and worries that something dreadful is going to happen again, but she should be fine now. It was all quite an ordeal for her and she had to abandon her first year at college, but she has now taken it again and has done very well in her exams.

Doug
09-07-2009, 04:12 PM
Jack- Nothing to add. I just realized I haven't crossed paths with you for awhile! I think you need to straighten out Sangye and me on the matter of Tooting. (I thought I was in control, but I succombed to evil influences.):p

More seriously, it's great to hear your daughter's doing well in terms of health and school. Health and education: you never can have too much of either!

Martin Thomas
09-07-2009, 07:01 PM
Hi everyone,

I am a major success story for Rituximab and highly recommend pursuing this treatment to any WG sufferers. < snip > I give Rituximab my absolute highest recommendation and urge all WG sufferers to pursue it.

Great description of how the drug works and great news. Hopefully I'm not too far away from remission after my exposure to this drug. I sincerely hope this medication receives proper recognition here in the UK and becomes a Gold Standard (it can only currently be prescribed after all other drugs have 'failed' as it's not licenced specifically for WG).

Best wishes


Martin
Cumbria
UK

Jack
09-07-2009, 09:23 PM
Jack- Nothing to add. I just realized I haven't crossed paths with you for awhile!
I've been away to the coast for a few days, but unfortunately it did not turn out too well as I have been feeling unwell. Nothing new, just all the old stuff hurting and no energy at all. I'm just waiting for things to improve. They usually do.

Sangye
09-08-2009, 12:08 AM
Jack, I've been wondering about you as well. I figured you might be gone for a little vacation. I'm sorry it left you in bad shape. I wish that Wegs would realize it is NOT invited on trips!

Martin, I think the same generally applies for ritux in the US as welll--only gets authorized after cyclo has failed. That's not 100% of course, because it's up to individual insurance companies. But that's what I've heard most often.

Doug
09-08-2009, 02:00 AM
Well, be careful what you wish for...! Ha!:p

Sangye
09-24-2009, 12:51 AM
I won't see my Wegs doc until next week, so I figure I'll ask you folks with Ritux experience first : Ritux was created (and is licensed) to treat Non-Hodgkin's Lymphoma. Is the dosage Weggies receive less than the dosage used for NHL? All our other "cancer" drugs are much lower doses, so I'm wondering about ritux.

Martin Thomas
09-24-2009, 04:15 AM
As far as I'm aware the dosage is the same (i.e. based on body surface area and weight). Typical single dose prescription (see my comments on my regime above) is 1 gram.

Sangye
09-24-2009, 09:35 AM
My doc's office said my insurance still hasn't authorized ritux for me. It's been almost a month and my doctor even filed an appeal. Clearly the ctx isn't working-- it's not containing the Wegs, and I'm just feeling beat up from the side effects and damage from it.

This delay is based 100% on the expense of the drug. Anyone who worries that health care reform in the US will result in "waiting lists" or "rationing care" or anyone who thinks things are just fine as they are, is welcome to email me directly and we can have a little talk! Ctx has now failed twice for me, mtx failed once, and Cellcept isn't strong enough for this flare. They're playing with my life, and I don't like it one bit. :(

lafounk2
09-25-2009, 01:10 AM
Hi Margaret,
I too am sorry to hear about your brother. My son, Josh, was diagnosed with WG in April this year like your brother. Josh will eventually need a kidney transplant. As of yesterday, his creatine was 4.7. It's been "stable" for a while now and were hoping he won't need to go on dialysis as we have a potential "living" donor for Josh. A co-worker of mine who's ~44 yo offered to get tested to see if he's a match and it turns out he is. Josh had 5 plamaferesis (sp) treatments in June. Unfortunately, the treatments did not improve his kidney function as once hoped. His WG started in sinus's and Josh "had" blood clot in leg and is currently taking coumadin. I took Josh to Boston Medical Center where he saw Dr. Peter Merkel. Dr. Merkel works with Dr. Specks from Mayo in MN in treatment of WG. I do know they are teamed up in doing clinical trials on Retuximab. We go back to Boston in November for follow-up. I agree with the rest... Please see a Vasculitis Dr whom has treated WG patients. They know what's best in treating it as it is a rare disease. Josh's Make A Wish is planned for Saturday where we'll go back to Orlando and hope to do the vacation over from April when Josh took sick in Orlando. Looking forward to getting away and seeing a smile on Josh's face again..

wizard0562
09-25-2009, 02:44 PM
Hey, Craig Moshier here... I just posted my new member thread... and it tells you what it took me to get the Rituximab in the US... if you are not in the US and the issue requires Rituximab discuss it with your Docs... The Cytoxan just seems to make things a bit unstable and such... but works for others. I am having failing kidneys that seem to respond to Rituximab whereas some other aspects seem to respond to the Cytoxan and Prednisone and other meds. Be very sure of the route but remember that one is good the othe not, yet it may be different in WG all depending on the aspect and direction your system is going... talk to your Docs deeply and do some internet research that is newer than 2008... you may find more direction and support. Good luck and best wishes.

Craig:)

wizard0562
09-25-2009, 02:48 PM
Hey, Craig Moshier here... I just posted my new member thread... and it tells you what it took me to get the Rituximab in the US... if you are not in the US and the issue requires Rituximab discuss it with your Docs... The Cytoxan just seems to make things a bit unstable and such... but works for others. I am having failing kidneys that seem to respond to Rituximab whereas some other aspects seem to respond to the Cytoxan and Prednisone and other meds. Be very sure of the route but remember that one is good the othe not, yet it may be different in WG all depending on the aspect and direction your system is going... talk to your Docs deeply and do some internet research that is newer than 2008... you may find more direction and support. Good luck and best wishes.



Just so you know that even US Insurance Companies may be learning... with enough in the US the FDA may have to approve it.

Craig

margaret
09-26-2009, 09:06 AM
Hi Margaret,
I too am sorry to hear about your brother. My son, Josh, was diagnosed with WG in April this year like your brother. Josh will eventually need a kidney transplant. As of yesterday, his creatine was 4.7. It's been "stable" for a while now and were hoping he won't need to go on dialysis as we have a potential "living" donor for Josh. A co-worker of mine who's ~44 yo offered to get tested to see if he's a match and it turns out he is. Josh had 5 plamaferesis (sp) treatments in June. Unfortunately, the treatments did not improve his kidney function as once hoped. His WG started in sinus's and Josh "had" blood clot in leg and is currently taking coumadin. I took Josh to Boston Medical Center where he saw Dr. Peter Merkel. Dr. Merkel works with Dr. Specks from Mayo in MN in treatment of WG. I do know they are teamed up in doing clinical trials on Retuximab. We go back to Boston in November for follow-up. I agree with the rest... Please see a Vasculitis Dr whom has treated WG patients. They know what's best in treating it as it is a rare disease. Josh's Make A Wish is planned for Saturday where we'll go back to Orlando and hope to do the vacation over from April when Josh took sick in Orlando. Looking forward to getting away and seeing a smile on Josh's face again..

I'm sorry your son is having a hard time. My brother had his last ritux treatment a week ago and his kidney function seems much better. He is seeing local doctors as wells as docs at the Mayo in AZ who are working with Specks in MN and they are also consulting with docs at the Cleveland Clinic. Even his local rheumatologist has a couple of WG patients. He'll be back here at the Mayo in a couple of weeks for follow up appts. I'm not sure if he's included in the ritux trials they're doing in MN, but its a possibility. He's still having some issues with his joints, but now the thought is that it may be a reaction to another drug he's on...

Take care and all the best to Josh! Also, my brother had plasmapheresis done twice - once 5 times over 2wks (every other day) and another 7times over 1 week (every day) and it helped his kidneys both times. WG is so odd in what helps one person may not help another.

Sangye
09-30-2009, 12:47 PM
My insurance authorized the rituxan today. I see my Wegs doc tomorrow to figure out what we're going to do. I'm really looking forward to getting off this ctx!!

I also talked to my hematologist, who said there's no problem with coumadin and rituximab. This is a huge relief, since I'll be on coumadin for life.

Jack
09-30-2009, 04:03 PM
Great news Sangye. :)

Hope it works for you.

crackers
10-01-2009, 01:24 AM
way to go sangye.
john

Luce
10-01-2009, 06:17 AM
Yay Sangye, fingers crossed!

Doug
10-01-2009, 08:38 AM
...fingers crossed for sure- what good news, though!:):):):)+6

Sangye
10-01-2009, 09:24 AM
I just got back from JH. It's so reassuring to have a true specialist in this disease! The plan is to do ritux infusions-- once a week for 4 wks-- and stay on the ctx and 4 mg pred for the whole month. (He normally doesn't use rtx and ctx together, but the rtx takes a month to kick in and my Wegs is too active to leave it alone.)

I asked what happens after that, as in more rtx in 6 months, etc.... He said there's a good chance this is all I will need to put it into a solid remission, and as the next few months roll by we'll see if I can go back on higher doses of Cellcept or maybe stay off all drugs to maintain remission. As far as tolerating rtx, he's never had a single patient experience a bad reaction. He also said my case is very similar to another patient of his (ie, type/extent of involvement and refractory to ctx) and she has done great with rtx. Our conversation made me feel even more hopeful.

He explained why the ctx doesn't work for me. Even 150 mg (well below my weight-adjusted dose) wipes out my white blood cells more than it should but doesn't get the Wegs symptoms under control enough. So all it does is weaken me and do chemo-damage. He said I should never use ctx again and that my first docs never should have kept me on it for so long when it was obviously killing me. (I was on it about 7-8 months)

We have to do 125 mg IV pred at the time of each infusion to prevent allergic reaction. It's a bit nerve-wracking, because that can worsen my intracranial pressure problem. He consulted with the pseudotumor team at JH and they feel it will be okay. We'll just have to see what happens.

This last part was interesting. Those of you on pred know that our docs think 5 mg or below is nothing--certainly not enough to help, and you can easily get off of it. They always say 5 mg is "what the body naturally makes," so it's nothing. Dr Seo said that's not true and that one month after rtx begins, I can start weaning down the 4 mg daily very slowly. He said there's a big difference between 4 and 5 mg and that getting off the last 5 mg is the hardest on patients. My old rheumys used to ridicule me for all that, and here is one of the world's experts on Wegs saying "It's true."

So all in all, it was a great visit. I'm hoping to start rtx by next Tuesday at the latest. :):)

crackers
10-01-2009, 09:53 AM
so pleased for you sangye.btw that bit about about the last 5mg of pred is good to know.thanks.
john

Sangye
10-01-2009, 10:17 AM
Holistic docs know 5 mg isn't "nothing." If you give that to a healthy person they will notice it!

My doc also referred to rtx as one of several "steroid-sparing" drugs, meaning it works so well you don't have to stay on pred. Cellcept is one. I never needed pred while I took it, either.

Cindy M
10-02-2009, 04:56 PM
Sorry I haven't been on much lately. I have had 2 IV injections for Rituxan. I have been feeling a bit better at time but also have been very busy so then I am exhausted. I know this is a bit off topic, but I hope it is because of the rituxan that I am feeling better. I had mentioned before that I was thinking of selling my house and moving into a smaller place. Well I went ahead with it. I spent about 2 weeks getting rid of clutter and cleaning, (after being sick for the last 10 months it's amazing how quickly things pile up) I listed my house on a monday and by that saturday I was made an offer, accepted it so now I am just waiting to see if there financing will go through and for the there house inspection to be completed. The only problem now is that the place I am looking to move into is not available until either Dec 15 of Jan 20. I have until December 20th to move out of my place so it might be a bit of a problem if I have to go into January. I can stay with my sister until the duplex is ready but then I will have to put my stuff into storage.

Sangye
10-02-2009, 11:17 PM
Moving is exhausting. I had to move out of my house when I was still on oxygen and incredibly weak. I also closed my chiropractic office at the same time. My friends swooped in and packed everything in 2 or 3 days and got me out of there. I still had to oversee everything and make all the arrangements while handling all my regular bills, doctor appointments, etc.... Three months later I moved again, into an even smaller place.

And 8 months after that, I moved cross-country to Maryland. That was the hardest. The planning was incredible, not to mention selling almost everything I had. And moving out of state required a lot of work notifying patients, etc....

I had to drive my car with 2 dogs and a bird. I was so worried about my bird being in a car for a week. I had to have all my new docs here lined up so I wouldn't have a lapse in care. I hadn't been able to find a place to live, so I stayed in a hotel for a week once I arrived. That meant packing up my car with all the animals every day and driving around in a big city. At night, I'd have to unpack all of us and go back in the motel. I was in pretty sorry shape the whole time, but you do what you gotta do! I'm exhausted just remembering it all!

I've gone from a 3 bedroom house with garage and a downtown office, to a 1-room basement plus a small storage unit. In the end, I'm so glad I downsized this much.

Jack
10-02-2009, 11:31 PM
If I did not have the support of my family (and that wears a bit thin on some days ) I would have to do the same. In fact, I would probably need to bring in help to get by. :(

Cindy M
10-03-2009, 04:49 AM
Boy Sangye, here I am feeling sorry for myself because of the storage thing, I can't even imagine what you went through. I do have quite a bit of help from family and friends, but it is very stressful and scary. I keep wondering if the place I chose is the right one for me. One moment I am excited and the next I am worried that it might not be the right one.

Sangye
10-03-2009, 06:10 AM
I used to watch Dr Phil years ago. He'd say, "Sometimes you make the right decision, and sometimes you just have to make the decision right." You'll be okay. If it isn't the best place, you can move again or find a way to make it better.

When I first moved into this basement, I was sure I'd move within 3 months. Here it is, a YEAR in a couple days, and I've grown to like it. Not everything about it, that's for sure. But I'm staying for the time being.

jola57
10-03-2009, 06:57 PM
Sangye I am so glad you got the OK for Rituximab. With so many positive outcomes
I fervently hope this is the one that will put you on the way to absolute remission.

Sangye
10-03-2009, 11:08 PM
Me, too! I have a very good feeling about it. :):)

The first one is scheduled for Tuesday, so I'll let everyone know how it went!

Sangye
10-07-2009, 08:08 AM
I had my first IV today. Went off without a hitch! Good vein, no reactions, faster than I thought. The risk of increased intracranial pressure is in the next few days and for the next month or so, due to the 125 mg pred they give during the treatment. I'm totally wiped out, but optimistic about the ritux.

It's hard to think it, but I'm actually rooting for the rtx to wipe out all the B cells. (That's how it works)

DuaneHart
10-07-2009, 01:46 PM
Good news Sangye! Hope all goes well!!

Jack
10-07-2009, 04:54 PM
125mg of pred! That's more like it. :)

I know people don't like the stuff and I've certainly suffered from its use myself, but I'm a great believer in hitting this disease short and hard. It worked for me when first diagnosed and brought it under control within days.

Hope all goes well for you Sangye.

Sangye
10-08-2009, 01:37 AM
Jack-- I agree that with a full-blown Wegs crisis you have to use higher doses of pred to get things under control. But my current flare is not that severe. My doc doesn't want me on anything higher than 4 mg, especially since my body reacts to that small dose as if it were 30 mg.

He wouldn't even have me on the 4mg if the ctx were working. We're only using the pred to fill in the gap until the rtx takes effect.

Anyway, the 125 mg IV pred isn't for the Wegs. It's given during the IV to prevent an allergic reaction to the ritux.

Doug
10-08-2009, 01:48 AM
You know I have all my fingers and toes crossed for you, Sangye! (That was no reference to any particular belief system....Ha! Or maybe it was, in which case it wasn't meant to be.):)

Sangye
10-08-2009, 01:56 AM
There probably is a "Toes Crossed" religion! Thank you for you good wishes and prayers. :)

jola57
10-08-2009, 06:23 PM
Keep your spirits up, smile and giggle, play catch with your dogs, and generally enjoy
what life has to offer. good times are just around the corner. I feel it in my bones.:D

Sangye
10-09-2009, 01:31 AM
Me, too. And, I'm going to see the Dalai Lama in D.C. this Saturday!!!

jola57
10-13-2009, 04:37 PM
What an amazing man. He radiates a wonderful kind of energy. I hope you were close enough to get some of that positive vibe.

Sangye
10-13-2009, 09:27 PM
Yuppers, monks and nuns get the best seats.... He is so deeply respectful of all beliefs, including those who have no belief system. He makes no distinction between beings whatsoever.

Sangye
10-14-2009, 10:57 AM
Just had my 2nd Rituxan treatment. I can't tell how I'm tolerating the rtx, since the solumedrol (and benadryl) given with it plus having to stay on cytoxan at the same time are really making me feel lousy. I'm white as a ghost--actually scared myself seeing my reflection when I got home. I have a splitting headache, non-stop drenching sweats, severe weakness, etc.... I think it's mostly due to the pred. I just can't tolerate doses like that, but it's necessary for the ritux IV.

I'm just hoping my sore eyeballs aren't the sign of increasing intracranial pressure. Unfortunately, the docs can't tell any better than me at this point. Gotta wait and see if my blind spots worsen (easy for me to tell). I sure hope it's just pred making me feel lousy. Not in a good place right now. :(

crackers
10-14-2009, 11:18 AM
oh sangye,i feel so sorry for you right now.every positive thought i can muster is heading your way.
john.

jola57
10-14-2009, 02:37 PM
Me too sending super warm thoughts your way Sangye. Just aside, since starting MTX I have headaches and eye pain with bulging out. Some days worse than others.

Doug
10-15-2009, 12:13 AM
Oh man, I am so sorry you are in such misery, Sangye. It seems sometimes we're science experiments for our doctors, to an extent even they must think "If you don't let me kill this one, God, I'll give up golf on Sundays!" Sorry. I hope that gave you a laugh. :)

Sangye
10-15-2009, 01:05 AM
That was hilarious, Doug.

There's just no way around some of this mess right now. Just gotta get through it.

Sangye
10-15-2009, 05:31 AM
I just got good news from my Wegs doc. He said my lab work is trending badly so I have to stop the cytoxan immediately. (Oh, darn! Can't I take more, please? HA!) I guess the rituxan is working 2 weeks faster than expected and the added ctx is just too much. Sure felt like it.

It's funny, I just couldn't get myself to take my morning dose of ctx today. Kept putting it off. My intuition never fails me.

Since I can't ever take ctx again-- way too toxic for me-- I am done done done with it. Doin' a little happy dance in my head, I am.

He also said he might try to decrease the solumedrol dose a little next time, since I have such a bad reaction to it. Probably not by much, since it's necessary during the IV, but any little bit will help.

Jack
10-15-2009, 06:09 AM
Hope this is a sign of some progress Sangye.

Sangye
10-15-2009, 06:12 AM
Me, too. Just getting off the ctx is huge. We've known for 1.5 months that it wasn't working and was actually harming me, but with insurance delays and waiting for the rtx to kick in, I had to stay on it anyway. It's bad enough to take ctx if it's helping, but really bad when you know it's making you worse. Goodbye ctx.

jola57
10-15-2009, 04:05 PM
Goodbye and good riddance. Sangye I so wish that ritux works for you.

DuaneHart
10-17-2009, 10:00 AM
Thanks everyone... we're hoping he'll have some sort of success with the Rituximab, even if it means he's able to be out of the hospital for more than just a week. When he was first diagnosed, the docs (including those at Cleveland) all told us that the cytoxan/pred treatment had never failed for any of their patients. After talking to the docs at Mayo, we're seeing that cytoxan doesn't work for everyone. In my brother's case, the cytoxan helped his lungs, but it did not help his kidneys which were failing rapidly. We know that the rituximab treatment is fairly new and that we've got to play this game on a day to day basis, but we're still hopeful.

It looks like the plan for now is to keep him on some heavy steriods, do 5-7 plasmapheresis treatments and then start the rituximab. He'll do the rituximab infusions once a week for 4wks. Hopefully he'll be able to go back home to TX late next week after his first infusion and then return to AZ for a follow up in a month.

The docs here are consulting with Dr. Specks in Rochester, MN - anyone seen him before? He seems to be the one really working on rituximab treatments...

Thanks again.
I don't take ritumixab, I am on Methotrexate and Pred. I had been seeing a Rhuemy here Rochester and I just had my first visit with Dr Specks yesterday. and I think he really knows what he is doing. He, in fact, yesterday told me that he is not totally ruling it out but he believes I may not have WG after all--that it is an offshoot of my Crohns disease and Ulcerative Colitis. He said the anca findings for WG and IBD/Crohns are very similar. Up until August I did not have pulmonary symptoms but now have lung congestion and sinus issues which he said can also be caused by the Crohns. Who whould have guessed?? Today I had a bronchoscopy which should nothing extraordinary and Monday I have a CT of my head and of my lungs. Hopefully something will get figured out soon. I am tired of the metatrexate and prednisone to no end and just want to feel good for one day.
Nonetheless, I am still very happy that I found this forum. It has been extremely helpful and a wonderful place for support. I feel like I have a whole new circle of friends. I will keep you posted on my findings--WISH ME LUCK!!

Sangye
10-17-2009, 10:10 AM
I really hope you don't have Wegs!!

Crohn's and UC can be treated very well either wholly or partly with holistic methods, in case you didn't know. (Not a do-it-yourself project, you need a good holistic doc to guide you)

Doug
10-17-2009, 02:27 PM
Hey! This may mean Lisa Coffeelover will have to run down another weggie to maintain her superior record in meeting, well, weggies!

Whatever you have Duane, we still stand behind you, and hope you'll stick around till and after your illness is worked out!:)

RCOSSIO
10-17-2009, 02:37 PM
Duane get out of our forum...its only for weggies.

Honestly, i hope your doc is right and you don't have wegs. That can be the best news anyone could hear...hoping for the best!

And yes you would be welcomed back to our forum...even though you are a purple bleeder and wear "i hate brett favre" shirt...:d

Sangye
10-18-2009, 01:02 PM
Richard, you make me laugh every time I read one of your posts. That first line just got me laughing so hard!

jola57
10-18-2009, 04:24 PM
Duane that may be the greatest gift ever. Like Sangye said a good diet and a supervised holisic approach will ease Crohn's significantly. The colitis may be trickier but still way better than WG.

RCOSSIO
10-20-2009, 01:28 PM
Sangye,

I am glad..laughter is a medicine we all can use from time to time...

Sangye
10-20-2009, 09:38 PM
Doug's comment about Lisa Coffeelover needing to run down another Weggie got me thinking. Is she just trying to increase her stats by tagging Weggie-Wanna-Be's??? :D:D:D

Doug
10-21-2009, 07:28 AM
Oh, no! I believe her motives are pure as the driven Minnesotan snow!

coffeelover
10-22-2009, 09:03 AM
OK GANG....not fair to gang up on me when I am not visiting....To set the record straight,I would never wish this disease on my enemy much less nice people like Duane.
I live so close to Rochester (within 2 hour drive) that anyone who goes there or lives nearby gets me harping on a meeting with them. Not all are takers yet!
Speaking of Roch...my Rhuemy may be sendeing me there shortly as I seem to be having some "active Wegs" symptoms. (sinus/nasal related) Drat and Darn! I thought I was getting better....
Richard, I too love your quick wit. Keep it up. Smiling is good for the soul.
Lisa

coffeelover
10-22-2009, 09:04 AM
Keep the "S" word out of it Doug!

Sangye
10-22-2009, 09:12 AM
Ah, I knew we could lure you back with a little ribbing....

But hey, what's up with the maybe active Wegs stuff??? I don't think you applied for a renewal of your Sick License. You could be fined for any attempt to get sick again, you hear? :D

With that said, please don't wait to visit Rochester. Having seen for myself (with my current flare) how easy it is to either miss or over-medicate a flare, I encourage you to get the very best docs to take a look.

coffeelover
10-22-2009, 09:15 AM
Thanks Sanye. I intend to make arrangements next week after I get some bood drawn so I can be armed with all the current information.
I know the ANCA does not necessarily mean the Wegs is active.....but mine is high according to my rhuemy and that is part of her concern? Any advice?
Lisa

Sangye
10-22-2009, 09:22 AM
Toss out the ANCA. How do your other blood markers look (Sed rate/ ESR and CRP)? What symptoms are you having? In particular, are you having any increase in old, familiar symptoms, even just slightly? This is what they will base their appraisal on at Mayo. The ANCA is mostly useful only for initial diagnosis.

coffeelover
10-22-2009, 09:27 AM
I will find out about the other markers next week.....but two months ago they were good.
Slightly some old signs , unfortunately yes...but I want to deny it! I have been quite busy the past two weeks and the weather is changing to dull and boring so I make excuses due to my mood changing witht he weather. I know! I know what you will be telling me next.
I am back to slowing down and even took any extra day off work this week.
coffeelover

Sangye
10-22-2009, 09:55 AM
Okay, Miss Smarty Pants... I'll write it anyway, even knowing you already know what I'm going to say.

Way back in Feb/Mar I had very subtle signs of a flare. Symptoms I hadn't had since the Wegs initial onset. I was never fully in remission, so it wasn't clear what was happening. And my blood work looked fine to boot. But I knew. I wanted to increase the Cellcept but without blood evidence and more obvious symptoms, I let my doctor talk me out of it. April to June was hideous, getting weaker all the time, in the hospital 3 times, endless "pneumonia" that we later discovered was lungs bleeding. And cytoxan for 4 months and now rituxan. And back on pred because the drugs needed time to kick in.

All that could have been avoided. If you catch a flare early, you don't have to go through everything like before. I didn't know that. I thought, "Oh here we go again." Since my original dx, I've never gotten off the ferris wheel, but I've been better than I originally was.

So if it were me, I'd get on the phone tomorrow and make an appt at Mayo asap. It might be fastest to ask your rheumy to facilitate it for you.

RCOSSIO
10-22-2009, 01:29 PM
Sangye well said

RCOSSIO
10-22-2009, 01:35 PM
Coffeelover,

Maybe its time to move to a sunny climate..ohhh maybe FLA. Yes granted we have hurricanes, humidity, some rain..but we got Mickey, boating, the Dolphins, Bucs or Jags (maybe) and best of all we got me...Yes we have plenty of CUBANOS IN Fla. Granted I live north of Miami...grew up there most of my life.

So come and visit; in fact I am wearing a t-shirt and shorts as I write this and on my balcony overlooking the Atlantic. Ahh life in good sunny weather. If it makes you feel any better, wear "I hate Brett Favre" t-shirts or in your case sweats and maybe it can cheer you up. :D

Sangye
11-08-2009, 02:31 AM
Lisa Coffeelover, how are you feeling now? Any change in your symptoms? Mayo? (Note: I'm not asking what you want on your turkey sandwich. Ahem.) :rolleyes:

coffeelover
11-09-2009, 05:39 AM
I'd rather answer the turkey sandwich question. Mayo and mustard.

I am waiting still for results, but called on Friday with my authorative voice and was promised that I would have them on Monday....we'll see.
Other than that, I feel great and am able to exercise and work and play (lots of playing this past weekend...birthday) So I think I am cautiously ignoring any symtoms that may be cropping up.
How is that for honesty?
Lisa

Doug
11-09-2009, 07:18 AM
Happy Birthday, Lisa! I missed it, but that's a man's perogative. Or predisposition. Whichever! May your birthday present from Mayo be "still in remission" !:)