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timbo vic aust
11-28-2009, 11:47 PM
i was reading margarets concerns about other drugs not working for her brother i have had one course of rituximab and am due for another on the 7th december and same results so far as so many others NO SIDE EFFECTS the only effects i had on the day were the jitters and shakes a little not much to put up with really if you can put up with the disease itself hey :D my rheam swears by this drug he says he has 10 patients under him with wg in victoria australia each is different as in needs for the drug . he told me the other day one fellow only had to have it once but one of his long term patients has had 8 doses so everyone is different but the main feedback i hear about it is it is hard to get it prescribed because it is so expensive compared to cyclophosmamide ( phew thats a long one )
so the hospitals dont like handing it out willy nilly hence why a lot of people get put on the cyclophosmamide. but the biggest difference between the two is rituximab only kills the bad cells which are the b cells it does not TOTALLY wipe out your immune system like the cyclophosmamide does i know which one we should be all pushing for . but like i read others saying as well it is trial and error with a lot of drugs and not all will work for everyone
i myself am on rituximab iv 1000mg methotrexate tablets 20mg , vitamin d hi potency, calcium tablets , and folic acid tablets 10mg , im not sure what other drugs they use as well but i seem to remember seeing imurin and bactrim on here somewhere but i dont know what they use them for ?
thanks Tim.:)

Sangye
11-29-2009, 02:02 AM
My Wegs doc at JHU is very excited about ritux, too. I think all the Wegs specialists are. Cytoxan doesn't just wipe out your total immune system (bad enough!), it mutates DNA and causes widespread damage and toxicity. It's chemo, after all! I'm sure hoping that in the future no one will have to use cytoxan. It's a brutal drug.

BonnieB
12-16-2009, 01:41 PM
I'll be interested to hear what you felt after your second course of rituximab. My son had his first course in sept-oct and I will campaign for him to get another 6 months later. I don't want to wait until he has signs or symptoms of recurrence- he lost so much lung and kidney function this summer. Are you already on schedule for a third round? Hope you are feeling well!

Sangye
12-16-2009, 01:53 PM
I had weekly infusions for 4 weeks in October. That's the typical schedule. I see my Wegs doc tomorrow for the first follow up since then. He had said that we're going to play it by ear and not automatically repeat the 4 infusions in 6 months. The reason was that one round is often sufficient to induce lasting and/or long-term remission. He's also concerned about maintaining me at that level of immune-compromise-- much greater level than with Cellcept or other remission-maintenance drugs.

I'm doing much better lately. Not having the terrible joint pain that I've lived with for 4.5 yrs now. Easier to breathe. So something is better!

I'll post tomorrow when I know more!

BonnieB
12-16-2009, 02:51 PM
are you still on cellcept after rituxan- thats the recommendation at present for my son- not sure why- that lowers T cells and his B cells are already wiped out. He is still tapering off prednisone. very slowly-have you had more than one round of rituxan? do you feel well enough to work, go to school, exercise? trying to figure out what I should encourage. May be just to soon to tell...

Sangye
12-16-2009, 03:08 PM
My doc had talked about getting the current flare under control and then using Cellcept at a higher dose (3,000 mg) to keep it under control. But he wasn't set on anything-- really just wanted to see how Ritux works for me.

The month of ritux was the first time I've had it. I've had severe complications for 3.5 yrs and have never been able to return to work. I know I will at some point, but I have to be way stronger than I am. I have certain complications that we're stumped by. I can only stand about 10 minutes without large amounts of fluid pooling in my lower extremities. So work is not on my immediate horizon.

I had extensive damage to my adrenal glands due to being near-death for so long pre-diagnosis and then adding cytoxan and massive pred (1,000 mg/day). In addition, cytoxan is dangerous for me-- my Wegs specialist now says I can never take it again. Much too toxic, even at a subtherapeutic dose.

Everyone is very individual, though. I could never extrapolate my reaction to ritux to anyone else. Do you have a Wegs specialist for your son? It's vital.

BTW, Cellcept inhibits both T and B cells. A few months after ritux, the B cells begin to return (timing varies). For some people that can cause a flare. If they put him on Cellcept it might maintain remission without having to do more ritux. This is a very good idea. Cellcept is very well tolerated. I was on it for 2 yrs and didn't have to take pred. I flared because I needed to be on a higher dose. I was on 2,000 mg. I always felt like it was a barely therapeutic dose. Turns out I was right. By the time we increased it, the flare was in full swing.

BonnieB
12-17-2009, 02:31 AM
Thanks for your help, I'm sorry to make you relive all this. Yes, though we don't have a Weg's specialist here- but we go back and forth to Az., where the folks at the Mayo are catching up quickly with the help of Dr. Spechts in Rochester- he is about to publish a 5 year study just on this topic- but most folks aren't waiting and have proceeded to use rituxan already. My son feels his intermittent flares of inflammation in joints and tendons are due to cellcept so he stopped it- but I know its the wegs-he won't relent for now- but I believe he'll have another episode in the next few weeks and then we'll see. Thanks again-

Doug
12-17-2009, 10:23 AM
Is he taking his medication on schedule and at all? There is a temptation at some points in your treatment to lighten up of the drugs or not take them because, well, the drugs are working and dealing with the root cause of the joint pain and other symptoms. Just asking...!

Sangye
12-17-2009, 11:39 AM
Bonnie, your son's joint pains are not likely to be from the Cellcept but from active Wegs. His Wegs might be "breaking through" the Cellcept. That's what happened to me. More on that another time if you want.

I saw my Wegs doc today. He said ritux "wipes out B cells for 1 year, give or take 6 months." Since I don't have other options, and since it does seem that the rtx is starting to work well for me, he said we'll either do another round of rtx in the spring (6-month marker) or next October (1 yr marker). (One round = 4 weekly infusions). We'll go by blood tests (if the B cells return to normal levels) and symptoms, of course, to avoid a flare.

He said even though ritux has been used for NHL for some time, its use for Wegs is still so new that they don't know the long-term risks. He doesn't yet feel comfortable doing more than 5-6 rounds on someone as young as me (46). But that would be a long ways off anyway.

He has 30-40 patients on ritux, and has had only one develop an antibody to it. That patient can no longer use it as a result. This is a big risk--another reason why they are conservative about doing many rounds. The more times you "present" a foreign substance to the body, the more likely you are to develop an antibody to it.

Meanwhile, in January I'm going to start dropping pred very slowly. I'm on 4 mg--can't even tolerate 5 mg anymore because I started on such crazy high doses. He said to drop it by 1 mg per month, and to stay at the new dose longer than a month if necessary.

So it was a good visit. I'm hopeful. I feel so lousy today--extreme fatigue-- but my heart is feeling more hopeful that I might see remission someday.

Sangye
12-17-2009, 11:41 AM
Bonnie, the danger of him stopping the Cellcept is that it takes one month for it to kick in when he starts it again. So if he stops it and then figures out that he's flaring, he's in deep doo-doo. The Cellcept won't have enough time to start working. It could be deadly. Please tell him about that.

Cellcept doesn't cause joint pain. Wegs does.

Sangye
12-17-2009, 12:43 PM
I was on 2,000 mg of Cellcept for 2 yrs (no pred). I still had a lot of joint pain and stiffness while on that dose. It kept me from exercising at all. After about a year, I began to have a sense that 2,000 mg was enough to keep me from a flare, but not enough to really get the Wegs under control. The Wegs was smoldering.

In February of this year, I got even more symptoms of active Wegs. Nothing major, but they were the ones I had at disease onset, so I was suspicious. I wanted to increase the dose. My blood work was normal (ie, no inflammation). My doc thought it was a combo of drug side effects and damage, and general de-conditioning from having been sedentary for so long.

By spring, I grew much weaker and developed lung symptoms that wouldn't respond to antibiotics. My hematologist was desperate to help me and increased the Cellcept to 3,000 mg. I continued to go downhill. Within a couple weeks we realized it was a Wegs flare that had begun in Feb. Cellcept takes a month to fully kick in. Not enough time to get the flare under control, so we had to bring in the big gun--cytoxan.

My rheumy acknowledges that if we had increased the Cellcept sooner, I would have avoided this flare. I can't fault him, since my blood work was fine and it wasn't at all a clear clinical presentation. But now we know that I can tell.

If I go back on Cellcept, he said he'd put me on the 3,000 mg dose to begin with.

elephant
12-17-2009, 01:05 PM
Thanks Sangye, I'm hoping the cellcept works for me. Glad your feeling better.:D

Sangye
12-17-2009, 01:09 PM
I hope it works for you, too. I liked Cellcept. The only side effect I had was diarrhea. It's common, but I don't think I developed it until I'd been on CC for a few months.

BonnieB
12-17-2009, 01:31 PM
I think the real effect of the rituix hasnt come to you yet. it really wasnt until the last 2 weeks (my son got his 4 weekly tx's mid sept- mid oct) and just now is beginning to truly be pain free,stronger and off all pain meds. That's huge- he was on more pain meds than I or any of my colleagues had ever seen- young metabolism I guess. Even though his cd-20 lymphs were zero 1 month out- he still had immune complexes causing active disease. You are right- I am sure the joint pain and swelling is the disease but I"ll need his doctors to convince him. I think you have reasons to be optimistic. Let's all be optimistic!

Sangye
12-17-2009, 01:36 PM
That's very encouraging, thank you!

Jack
12-17-2009, 06:06 PM
I like my Cellcept! :)
I'm only on half the intended dose due to an early communication error with my doc (I take 360 mg twice/day), but it has kept my Wegener's stable for many years. Before that, I was taking Neoral (cyclosporin) and having repeat flares requiring stronger treatment.

timbo vic aust
12-17-2009, 07:00 PM
:confused: i dont understand what all these other drugs you all talk about are for and what they do and are used for celcept , cyclosporin, imuran , just to name a couple from memory my rhuematologist has'nt spoken to me about any of these as yet . or do they use these for the kidney involvement .

Jack
12-17-2009, 07:12 PM
There are a whole host of immune system supressing drugs and just to make things even more complicated, the names can be different from country to country. The ones you list are just some of them.
I seem to remember that the one you are takeing is methotrexate. This is one of the more recent additions, but does not suit everyone. There is no reason why you should have heard of the others unless you have been around the disease for a long time or have a problem with your current medication.

Sangye
12-18-2009, 03:35 AM
Quick info about Wegs drugs :

Chemotherapy
Chemo drugs are used because they have the side effect of suppressing the immune system.

Cytoxan/Cyclophosphamide/ Ctx-- is used to get active Wegs under control. Heavy-duty drug. The harshest Wegs drug. Until this year, known as the "gold standard" in treating active Wegs. Causes infertility in majority of patients. Lifetime limit of how much ctx one can receive due to its toxicity and carcinogenic abilities.

Methotrexate/ Mtx-- is used to maintain Wegs remission. Often used after a course of Ctx to continue getting active Wegs under control. Typically not strong enough to get highly active Wegs under control or to induce remission. Much less toxic than Ctx. Often used for many years.

Imuran-- similar to Mtx. Initial blood test must be done to ensure you can take it. Regular blood work is done to monitor effect on liver.

Immune-suppressant

Cellcept-- targets particular white blood cells involved in Wegs (B cells). Fewer side effects than chemo drugs. Used outside of Wegs to keep kidney transplant recipients from rejecting new kidney. Not strong enough to induce remission or get highly active Wegs under control. Is used to maintain remission.

Biological Agents

Rituximab/ Rituxan/ Rtx-- genetically-engineered monoclonal antibody that selectively wipes out B cells. Non-chemo. Well-tolerated. Given in IV infusions very infrequently (once or twice a year). New study shows rtx is as effective as ctx in inducing remission. Extremely expensive. Could become new gold standard for Wegs.

timbo vic aust
12-18-2009, 10:50 AM
:) thanks for your info jack - sangye very helpfull now i understand. it's like what we spoke about once before, all the different drugs but only certain ones work for certain people + depending on the severity of the condition which one to use.:cool:

ticklytoes
12-30-2009, 03:20 PM
sangye
How long do the injections take when you go...Ive heard its 6 hours...is that true? How are you feeling a now, a little after the treatment? I am on mtx and 8mg pred, and this seems to be the marker for how low i can go before my PR3 becomes positive again and i begin to lose hearing... I am wanting to try this new drug, but I wonder if I should try cellcept first? what do u think? nicole

Sangye
12-31-2009, 02:30 AM
Nicole,
The infusions take about 6 hours. The usual protocol is 1 infusion weekly for 4 weeks. (Some people with milder cases or those who are maintaining remission might only have 2 infusions in a month)

I'm definitely way better with rtx than I was on anything else. I don't get crippling joint pain every time I do something. My lungs feel better--easier to take a deep breath. I'm sleeping very well. I still have extreme fatigue, which I believe is due to the pred, etc....

Generally they're using Ritux to induce remission and Cellcept only to maintain it. Cellcept isn't strong enough to get you into remission if you have very active Wegs. I don't know where that puts you-- do you have a Wegs specialist?

Jack
12-31-2009, 04:04 AM
I don't get crippling joint pain every time I do something. My lungs feel better--easier to take a deep breath. I'm sleeping very well.
All sounds like positive stuff Sangye. :)
Hope you have found something that works for you. You deserve a break!

elephant
12-31-2009, 04:50 AM
It really sounds like the miracle drug for WG. Sangye, I have a feeling this is going to work for you. :)

Sangye
12-31-2009, 07:26 AM
Thank you, I do too. Rtx is helping so many Weggies.

Doug
12-31-2009, 07:34 AM
I'm encouraged by your experience, Sangye, because we all face the possibility of a future flare. The Rituximab infiusions sound like a much easier path to remission or control of a flare than what we went through in past.

Sangye
12-31-2009, 08:14 AM
When I saw my Wegs doc 2 wks ago, I asked him what we would have done without rtx. (Ctx was destroying my bone marrow faster than it could make it) He said "I'd have your hematologist give you something to push your bone marrow more and you'd just have to tough it out." They truly have no other option. I know that plan would kill me-- I don't have the body reserves to survive that. So I'm hugely grateful for rtx.

ticklytoes
12-31-2009, 04:41 PM
sangye,
yes, i have an awesome rheumy :) i love her! I asked her about Rtx today and she said the major thing is cost...hard to get approved since Wg isnt a laveled use. She was all aboard for me getting the inj. she did tell me about a rare virus that it makes you more susceptible to...PML? Ever heard of that? She said theres no cure and it effects the brain. Kinda scary, but she said that its super rare. Im still considered in remission as far as all my ANCA PR3 etc. etc goes, but, seems like I have to be on at least 8mgs of pred or so, and 5 mtx every week. I have a trach bc of ss that i got back in Feb. I read about Gwinn and ger getting cured from her trac stenosis; makes me want to join her! I really want to try the rtx so i can see if i can get of my meds, or at least the pred! and, i would love to not have to have surgery to remove the tissue build up around my airway. I have very limited WG. it only effects my ears and airway. I have lost about 75% of my hearing, and like i said i havve a trach. My rheumy is getting the prior auth girl to call my ins to see if they will approve the rtx, but she says sometimes they also wont unless you have failed on cytoxan. I REALLY dont want to be on that at all. isnt that somethin! they want you to get on a drug that will most likely cause damage they will have to pay for in the long run...doesnt make sense to me! Anyway, any info you have would be great. I am 29 yo and would love to maybe have one more child. at this point though, my ob says NO! dont risk it...but i may have hope with rtx, huh? let me know what you think...also, whats your name? lol...i cant seem to remember how to spell your screen name for my life...maybe its the pred! Thanks, nicol

jola57
12-31-2009, 05:05 PM
nicol, you are right about us getting first cytox and other life threatening drugs before getting the one that actually works and is so much less toxic. PML you can get from any of the immunosupresant drugs we take as well as rtx. So the choice is clear. As with everything the governments (its not the docs decision but always mandated by the government or insurance co)will give the most inexpensive treatment availble even if in the long run the more expensive is better and safer for the patient.

Jack
12-31-2009, 07:31 PM
The acceptance of new drugs and treatments is always a slow process I'm afraid, especially if they are expensive. When I first switched to Myfortic (Cellcept) it had to be paid for from a research budget because it was not an approved treatment for Wegener's, but now it is in the mainstream of drugs used.

Sangye
01-01-2010, 02:40 AM
Nicole,
Jolanta is correct. Even though a new study just showed rtx to be as effective (and slightly moreso) than ctx in inducing remission, the cost prevents it from being used first. I'd be surprised if your insurance authorized it without a history of failure on ctx. This is awful, but true.

PML is caused by a virus that most people have dormant in their bodies. If you become immune-compromised, that virus can become active and cause PML. It's a risk with any of the immune-suppressants--ctx, Cellcept, Rtx. (There's also a risk of developing it just from being immune-compromised. That happens in people with AIDS.) The risk is very low, but because it's a rapidly fatal condition, doctors must educate patients on it.

BTW, my name is actually Sangye! (It's my Buddhist name, not my birth name)

ticklytoes
01-01-2010, 07:20 AM
thats a bummer...al i can do is hope that my ins. is really good, and not so strict i guess ;0( Like i said, im in remission, but i have to be on mtx and 8mg of pred to keep it...I would love to be on lower doses of pred, ya know? and, my ENT at Vanderbilt also wants me to be low so he knows that if i taper and he takes my trach out, that it isnt gonna swell back. Nicole

timbo vic aust
01-01-2010, 11:09 PM
i take my hat off to all you guys because it is you all the long term sufferers off this rotten disease that has made it so much easier for newly diagnosed people like myself.you all have done the hard yards and trialled all these nasty drugs and medicines and put yourselves through hell on earth just so people like myself get straight onto the newer drugs as sangye says ritux is brilliant i also can say how good it is but i cant comment on the others ctx etc... because i have never had them from what everyone says i would'nt want them either the only thing i cant handle is the pred they have cut me back to 37.5mg a day but it gives me a pounding heart beat, the shakes, bad tremors in my legs, i still have the bad fatigued legs and knee joint pain sitting moving around or totally resting does not make a difference to my legs. it's the most frustrating part of the disease for me i am awaiting some kidney testing at the moment so hopefully it will be good news their for those who dont know i have all aspect of wg except the kidneys . back to ritux as i said i am one of the lucky ones to receive rtx as a first up drug my rheaumy pushed for it for me from day 1 but said we may have to fall back on to the nasty one ctx . also from what i read on the forum it sounds like it is a lot harder to get rtx in the states canada and england so once again i thank all the long term battlers of this disease for making it an easier road for newbies like myself :)

boomer
01-02-2010, 12:37 AM
i started taking Imuran (Azathioprine) after the Cytoxan (Cyclophosphamide) as a maintenance drug. As for the Bactrim, I take it for Infections. Im in a rut and a flare up and I am going to talk to the doc. Thank you.

elephant
01-02-2010, 12:45 AM
Hi Boomer, welcome! What kind of flare are you having? How long have you been on Imuran? I take Bactrim every other day to keep sinus infections at bay.

Jack
01-02-2010, 12:59 AM
timbo - might be worth trying Atenolol for the pounding heart beat. I only take a very small dose, but I can't get by without it.

timbo vic aust
01-02-2010, 01:12 AM
thanks jack i will ask the doc about that at my next visit :)

boomer
01-02-2010, 01:12 AM
Thank you I have a doc appoint on the 6th i will ask him about it thank you. That cleared up one of my questions. The other is :is it the disease or the med that cause the heart pounding.

boomer
01-02-2010, 01:18 AM
Vomiting, nausea, headaches, joint pain I see my doc on the 6th. Ive been on Imuran for about 5 months.

Jack
01-02-2010, 01:19 AM
Wish I knew!

I take so many pills and have suffered so many side effects that I have no idea which of my symptoms are now caused by Wegener's. I suspect that most of my troubles are now due to the medication.

Sangye
01-02-2010, 02:42 AM
Pounding heart can also be due to anemia. I get it when my hemoglobin drops below 10. The heart has to work harder to oxygenate the body because the blood is carrying less oxygen.

It can also be from a mineral deficiency. Pred depletes magnesium, often causing cramps and pounding heart.

Boomer, are you on an acid-blocker along with the pred? If not, that may be the cause of your vomiting/nausea. Pred is extremely hard on the gut lining, so you must take an acid-blocker to protect it.

elephant
01-02-2010, 03:03 AM
Those symtoms don't sound good. Mabey Imuran is not the drug for you. I was on Imuran at first and developed a severe reaction( nausea, chest/back pain, fever, joint pain worsening Wg). They switched me to Cellcept, it works great. So far.

pberggren1
01-02-2010, 10:12 AM
What part of the country are you from?

Doug
01-02-2010, 11:09 AM
Having the testimony of other weggies, regardless of where they live, for one drug or another that may not have common usage or governmental approval (for cost or lack of studies, non-conventional use for WG, whatever barrier they put up) is, indeed a great help for all. It is misplaced nationalism, I think, for one western government not to accept the test data on file with another if that shortcut means quicker introduction of an efficacious tool to deal with difficult diseases like WG, where there are fewer therapies available, and a greater need to control the disease as fast as possible than most other diseases. I for one am happy to find out the course I took, while successful, may one day be limited to weggies with extremely difficult cases, not pretty much everyone who has it- Cytoxan and Prednisone! As Jack noted elsewhere, the Cytoxan intake accumulates to a point where you can't have it anymore.

Jack
01-18-2010, 06:26 AM
I have just stumbled upon a paper written by a team at the hospital I attend about the treatment of Wegener's with Rituximab, it is dated 2004 and details a trial they ran. This gives me hope that if I ever need it, the knowledge is readily available to the people who treat me. :)

Sangye
01-18-2010, 09:21 AM
Jack, I would think they would accept research from vasculitis specialists in other countries. There are so few Wegs specialists worldwide--they're all aware of what the others are doing. My JHU Wegs doc discussed studies done in Europe.

Jack
01-18-2010, 06:17 PM
It is just nice to know that the team treating me are the ones involved in these studies. There is nothing quite like first hand experience. :)

By the way, the subject of their research was in much worse shape than anyone on this forum! I guess they chose him because he had reached the end of the road, but it made sobering reading.
The Rituximab worked for him! :)

Sangye
01-19-2010, 02:21 PM
Many of the rtx studies have tested been on refractory (ie non-responsive to treatment) Weggies. That's actually the category I fall into. Ctx destroys too much bone marrow and doesn't control the Wegs, and I'm allergic to mtx (which isn't strong enough to deal with lung hemorrhage anyway). Rtx has great success in refractory Wegs.

GARYfromBOSTON
01-20-2010, 01:07 AM
My nephrologist, who is a WG guy, told me that the trick with rtx is knowing when to tail off the steroids. They don’t have the track record yet like they do with ctx. So it will be a bit of trial and error with me.

Sangye
01-20-2010, 02:47 AM
Yes, that's a good point. They have a standard steroid-taper plan that they follow with ctx, but not yet with rtx. Rtx works so differently from ctx. And rtx generally requires more than one round (month) of treatments spaced 6 months apart-- totally different than ctx. Rtx is referred to as a "steroid-sparing" drug, meaning they can get people to much lower doses or completely off it altogether and still maintain remission. It'll be interesting to see how it turns out. Thanks for being one of the pioneers, Gary! :D

BonnieB
01-20-2010, 02:34 PM
My son is on the steroid taper used in the recent rtx study, which is decrease dose every 2 weeks- 60, 50, 40, 30, 20,15, 10, 7.5,5,2.5- he's down to five and his round face is getting as thin as the rest of him- he certainly hopes he can stay down, but he'll be due for another round of rtx in march- not sure he'll need to repeat the steroids if his ancas are neg and his sed rate is down- we'll see what the docs say- he sees a rheum, nepho and pulm at Mayo in AZ who will confer with rochester folks who have more experiemce-, Wouldn't it be great if the future holds LESS drugs rather than more drugs for wegs patients?

Sangye
01-21-2010, 02:26 AM
That's a really fast taper! But I agree-- if it was used in the study and you have a Wegs specialist advising you, you're in safe hands. The Mayo AZ docs aren't Wegs specialists (I used to go there), so I'm glad they're consulting with Rochester. Just be aware that once he gets below 5mg pred, it can take a longer time to get off it altogether.

I'm due to get another round of rtx at about the same time as your son. I hope it works well for him!

BonnieB
01-21-2010, 02:35 PM
Sangye- have your doc's given you a supply of tamiflu to keep on hand? You rtx recipients have no protection against viruses, and this flu season is expected to maybe re-emerge in the spring.
Any hint of fever, sore throat etc, I start my son on a 5 day treatment, and when we travel I put him on the 10 day prevention dose. I hope all you guys keep some on hand- its very safe- even given to pregnant women-and this year's flus have been "killer". Yes the steroid taper is over 5 mos with the rtx study- all the patients but the adrenal affected ones have been able to do that. Good luck with your next round.

elephant
01-21-2010, 10:51 PM
Bonnie, I was told to only use tamiflu when someone in my family has the flu or if I start symptoms of ( headache, body ache, fever, cold like symptoms). Tamiflu has side effects too. I went on it for three days, because it made me so dizzy I could not stand. Once I stopped it I was better. The doctor said it is one of the side effects. I do have Tamiflu on hand.

Sangye
01-22-2010, 02:59 AM
I don't have tamiflu on hand and didn't get the flu shot. I've been on immunosuppressants since mid-2006 and haven't even gotten a cold, much less a flu. I was far weaker than I am now, especially when I was on ctx. (It was destroying my bone marrow faster than I could make it) I live alone, don't work, don't go out in crowds, and use pretty rigorous precautions when I do go out. I'm on high-dose vitamin D also. Vitamin D has been proven to prevent and minimize the flu. Vit D deficiency is a major cause of cold and flu "season." Of course, I could still get the flu or any other bug. I have a holistic remedy on hand that I reserve for emergency measures.

Tamiflu is not a mild drug and can be quite dangerous, in fact. It should not be used for every little bug. I would not agree that just because it's given to pregnant women that it's safe. They also gave pregnant women the H1N1 vaccine, and you'd be hard-pressed to find a holistic physician who thinks that's a good idea, especially when there are so many natural and truly safe alternatives. Vaccine damage isn't necessarily instantaneous-- it can be years before damage is evident.

Jack
01-22-2010, 03:08 AM
Here in the UK the use of Tamiflu is still being questioned. It does not seem to be much more effective than paracetamol for most patients and there is concern over side effects and also concern about resistant strains of the bug developing if its use is widespread. This is a bit of a change of policy and I believe we have huge stockpiles of the stuff.

BonnieB
01-22-2010, 06:08 AM
all good points, Jack and sangye, believe me if there was a holistic cure for this disease, we would be the first to tout it- when my son was on the ventilator the month of may, 4 people in that icu died of H1N1 ( one was a young pregnant woman) you better believe my son was getting tamiflu through his feeding tube. My pregnant visiting daughter took the 10 day course, too on the insistance of her mother and her OB doctor. To endure all this, take all these immunosupressants and not take a drug to prevent the flu because it makes you dizzy? To be sure the safest course is to stay home and away from possible sources, but not always possible...

pberggren1
01-22-2010, 07:10 AM
I totally agree with what you just said Sangye. I take 9,000 I.U. of vitamin D3 every day. Do you think that is a good amount? I also take a Calcium combo pill and fish oil pills as well. Any recommendations?

Sangye
01-22-2010, 03:46 PM
Phil, you should ask your doc to check your vitamin D levels in your next blood work. If it's low, they can prescribe a much higher dose. Otherwise, take the recommended dose on the bottle.

Luce
02-03-2010, 06:49 AM
I'm starting Rituximab next Friday due to a recent flare, any idea how I'll feel afterwards?

No mention of any IV pred with it, is this normal?

Sorry for the short post, I am rushed off my feet at the moment trying to balance work, wedding preparations and hospital appointments. Hope you're all well or at least in good humour!

moyan
02-03-2010, 08:04 AM
Hi, I learned at home ec teacher school that the only vitamin you can od on is vit.D. 2 fisherman who virtually lived on fishliver did overdo. :)

Sangye
02-03-2010, 09:42 AM
(Moyan, you can take toxic doses of any fat-soluble vitamin. The most common are D and A.)

Luce, I'm sorry you're having to take ritux but glad you can take it instead of ctx. It's routine to give at least 100mg solumedrol (IV form of pred, equiv to 150mg oral pred) to prevent allergic reaction. The risk is highest for the first couple infusions and after receiving numerous rounds of rtx.

Because I do so poorly with pred, my Wegs doc said we could lower the pred dose in subsequent infusions. As much as that idea appeals to me, the risk of having an allergic reaction to rtx makes me unlikely to change what's working. An allergic reaction is pretty nasty and scary, and if it's bad enough I could never have rtx again. Big problem for me.

I was incredibly weak after each infusion. Extremely pale, could barely walk or function. Each week I got weaker. I barely made it through 4 infusions. Before this scares the pants off you, remember that I had also been on ctx for a couple months and was on it for the first 2 weeks of rtx. Ctx is overly toxic to me and was destroying my bone marrow faster than I could make it. So it's hard to say how rtx alone affects me! I was also in very bad shape from the Wegs flare-- lungs hemorrhaging, extremely weak-- when we started. I didn't see a break in things until about 6 wks after the first infusion.

elephant
02-03-2010, 09:58 AM
Good luck to you Luce! This Ritux will work! Let us know how it goes. Remember to rest, so you will be strong for your Wedding! :)

Luce
02-04-2010, 06:10 AM
Sangye, thanks for sharing your experience and I'm sorry you went through all that. However you're right, I don't think I can take your experience and expect the same due to your circumstances.

Bummer about the IV pred, I was hoping I might be able to skip that as the flare isn't causing me too many problems and I'm only 10mg oral which I've been told to keep taking. But if it is to avoid an allergic reaction then bring it on I guess.

Thank you for the positive words elephant, I'm secretly quite pleased I've managed to get Rituximab which I know has been very successful with others. Shame I'm flaring and have worked my way through every other drug used to treat WG (except methotrexate which had never been mentioned to me), but that is the only way to justify having Rituximab on the NHS.
I have to sign a consent form as it isn't licensed for WG here and I have to travel 35 miles to the county hospital to have the infusions because my local hospital won't fund it. I have my first infusion on 12th Feb, then another 2 weeks later and we'll review after that.
Also still waiting for my iron infusion which is another trip to County hospital for some reason, and a check up with respiratory at the local hospital tomorrow to make sure my lungs aren't affected by the flare.

Bad timing for the wedding which is in April but hopefully I'll be done with it all by then, and thanks again Sangye for the advice. One thing I won't be doing is driving myself to the Rituximab appts after hearing how bad you felt afterwards.

Sangye
02-04-2010, 06:32 AM
Luce, I also think you'll have a different experience by only having 2 infusions in one month. I had one a week for 4 weeks. And don't worry too much about the pred. Especially if it's two doses two weeks apart. You probably won't notice much. Definitely don't drive yourself, though.

GARYfromBOSTON
02-09-2010, 09:32 AM
I'm starting Rituximab next Friday due to a recent flare, any idea how I'll feel afterwards?

No mention of any IV pred with it, is this normal?

Sorry for the short post, I am rushed off my feet at the moment trying to balance work, wedding preparations and hospital appointments. Hope you're all well or at least in good humour!

Luce, I just had my second dose of rituximab and they just gave me a tylenol and a benadryl (i was on 50 mg of prednisone a day). Since the first dose went in with no adverse reactions, they were not worried at all about the second (they start the first does real slow). I really felt no different after the injection. Good luck!

Luce
02-10-2010, 05:55 AM
Thanks Gary, its reassuring to hear this could be a breeze. I've only ever had one allergic reaction and that was during plasmapharesis for the wegs, something to do with an agent in the plasma. I came out in a lovely lumpy rash but it went again within a couple of hours. So I'm hoping there won't be any reaction to the Rituximab.
I tolerated cyclo infusions very well, just felt tired for a couple of days afterwards so fingers crossed for the same or better.

I'll let you know how I got on, although I'm a little sad to be saying goodbye to Cellcept in a way as it's been very kind to me.

Sangye
02-10-2010, 06:14 AM
I felt the same way about stopping Cellcept. It wasn't keeping the Wegs under control, but it did keep me off pred for 2.5 yrs and I tolerated it well.

Luce
02-11-2010, 04:11 AM
I got down to 5mg pred in the 6 months or so I was taking Cellcept so it was looking likely that I'd get off it completely, and then the flare came along...
I'm on 10mg at the moment which I know isn't much at all, is Rituximab a steroid sparing drug like Cellcept?
I barely noticed the Cellcept, the pills went down easily and apart from the odd upset stomach I don't think I experienced any side effects from it. I'd have been happy to take it forever if it kept the Wegs away.

Jack
02-11-2010, 04:16 AM
Cellcept did not work for me either and I was always having flares until I switched to Mycophenolate, but I still need 10 mg of pred and won't be able to get any lower.

elephant
02-11-2010, 04:27 AM
Jack I am on a generic cellcept called mycophenolate mofetil, I was on cellcept the brand but it went generic and insurance will not pay for it unless your doctor writes a novel to the INS com. This drug is from the pharmacy :TEVA it comes in a pretty oval purple pill, number imprinted 93 on one side and the other side is 7477. I take two 500mg pills twice a day, so 2000 mg a day. Yea, I was down to 5 mg of prednisone and now I am up to 10 mg. I am taking cyclosporine 100 mg a day and the renal doctor and I are trying to get me off it in four months.
Jack what company makes your mycophenolate? How much do you take? This also covers your kidney transplant too? You really inspired me, that's how I got to get my kidney doctor to reduce the cyclosporine. I told him about you.

Jack
02-11-2010, 04:39 AM
So sorry! I've got confused and given you incorrect information. It was cyclosporin that I was taking and then switched to Mycophenolate and then another minor change to Myfortic. It was when I was taking the cylosporin that I was still having trouble.

I take 360mg of Myfortic twice per day which I understand to be half the standard dose, but it seems to work for me. The same medication seems to cover both transplant and Wegener's.

Sangye
02-11-2010, 04:59 AM
I'm starting a new thread about Cellcept and Myfortic, etc....

elephant
02-11-2010, 06:26 AM
Jack, I am so glad you are doing well with that. My dream is in a year or two that the only drug I will take is generic cellcept and prednisone ( low dose). I see my Wg specialist in June. So I look forward to that. Really I can call her about anything, it's just I rather wait until things get really bad or not better. I see my local Rhuemy next week and so I will have a long discussion about my progress. Sinuses and ears are not getting worse. Just not improving. So the prednisone 10 mg helped. Anyways thanks for the clarification.
Sangye thanks for the thread on Cellcept.

Jeff
03-02-2010, 05:01 PM
Hi Sangye,
I have seen alot of your posts since I found this site, very good info.
I have a boy in college that was diagnosed with WG his senior year of high school. After 9 months of Metho and tapered pred kidneys showed some activity. The doctor then tried 2000mg cellcept and tapered pred again. Well, nine months later, more kidney activity again.
The doctor is now talking about Cytoxin. With everything I have read about it, it sounds scary.

I mentioned the rituximab to the doctor, and he told me it was too expensive. As a parent, you try to get the best help you can for your child. Should I press the issue to get this drug even if I have to take a loan out to get it? Or do the doctors consider it a last resort drug?

Jack
03-02-2010, 09:02 PM
Hi Jeff,
It is easy to get scared about using Cytoxan when you read about the potential side effects, but there are many (the majority?) of people on here who have used it successfully. The dangers of using it increase with the total dose consumed, so a single episode of treatment (6 months?) should not be too much of an issue. I have had multiple sessions of using it and have now come to the point where the risks are too great to continue, but my doctors are well aware of this and would use something else if I should need it in future. Generally, they like their patients to survive the treatment. ;)

elephant
03-02-2010, 10:33 PM
Jeff does your son go to a Wegeners specialist? If so the Rheumatologist can write/call the insurance to get them to pay for the Rituxibam. My Rheumatologist mentioned that if I need something stronger that is what they would put me on RTX, not the cytoxan. Like Jack said the cytoxan can put people in remission if used properly.

JanW
03-03-2010, 12:58 AM
Hi, Jeff -- my rheumo also told me that they could go to bat for me with the insurance company and get them to pay for rtx. I called the insurance company on my own (I was only diagnosed a month ago) and found out that I don't have to 'fail' on other medications to get rtx...the doctor just has to write a letter seeking precertification. Maybe this is the case with your insurer. You should call and see what the deal is -- you don't just have to take your docs word for it. I'm sure he deals with a lot of insurance companies and couldn't possibly know the ins and outs of each policy.

Sangye
03-03-2010, 02:11 AM
Jeff, your son definitely needs a Wegs specialist. I know you've probably seen me say that a thousand times, huh? But with kidneys increasingly active it makes me wonder if they know what they're doing. Also for the doc to make a blanket statement like "it's too expensive" without checking your insurance, etc... seems odd.

I don't know if my prescription insurance (Medicare Part D plan) required me to fail on ctx, but I did--twice. Some do and some don't. They did require a pre-authorization with documentation from my Wegs doc. He said he'd get the drug for me, no matter what it took. Because of the recent study showing rtx to be as effective as ctx without its toxicity, I think insurers may have an increasingly difficult time denying rtx.

If it were me, I'd get a Wegs doc involved first. S/he will know what's best and how to get the needed drug. If they think rtx is best and your insurance won't pay for it, the drug manufacturer probably has an assistance plan. It can take 30 days to get such assistance, though, so please start asap.

I don't think paying out-of-pocket is a good idea. Your insurance could drop your son's coverage if you do a serious treatment like rtx without their approval. (Don't get me started) Also, rtx is typically repeated every 6-9 months, and it could become unmanageable. Rtx is unbelievably expensive. I heard it was ~$40,000, but I don't know if that was for one round (4 treatments) or for each IV.

Lola
03-10-2010, 11:23 AM
My Rheumatologist prefers Rituxan over Cytoxan and wrote to the insurance company to request it. Denied. He appealed. Denied. I appealed, including all sorts of research material re: the effectiveness without toxicity in treating WG. I received my 3rd and "FINAL" denial. In the state of Washington, one can only appeal 3 times, then forever remain silent.
I cried when I discovered that the manufacturer has a patient access program for under insured and for those who have been denied by their ins. co. I qualified to get the drug free. That's $6,000/infusion. I had 2 infusions in Jan. 2010 and was careful to ask about the cost of infusing the drug - would it be covered? I was assured by the young insurance specialist that it would be no problem. Last night I received a notice from the insurance co. that the cost of the first infusion - roughly $10,000 - would not be covered because it was to infuse a drug which they consider investigative. I am devastated. Don't know what will happen. I do know that I will not saddle my husband with paying $40,000/year for the administration of a free drug. I cried a lot last night and know that I am just one of many with this kind of story. I also know that taking Cytoxan is not the end of the world. Most people on this forum are/did take it without ill effect. I'm just feeling mopey right now.

Sangye
03-10-2010, 12:27 PM
Lola-- mope away. Have you contacted the insurance commissioner in your state?

When I first was going on Cellcept, the insurance denied it-- said it wasn't approved for Wegs. My Mayo AZ doc wrote letters and they still denied it for the same reason. I was frantic, in serious bad shape and ctx had almost killed me.

Finally after about 3 weeks of arguing, I was on the phone with an insurance guy. He repeated "It's not approved for Wegs." It dawned on me that NONE of our drugs is approved for Wegs specifically-- not even pred! Every one of our drugs is used "off label." When I said that, he was like "Oh! Well we can approve it then."

I wonder if this applies to your case.

Also, given that Wegs is life-threatening, you might consider contacting a state senator or Representative for help. I've done it for lesser things and have always gotten help.

Lola
03-10-2010, 02:10 PM
My insurance company was clever enough to point out that the Cell Cept was not approved, either, and that I was lucky they were not going to charge me retroactively for it. A threat, to be sure. Maybe that sentence right there would be enough to get the insurance commissioner on my side?

I hate this sort of thing. I am not good at confrontation. Maybe I need an agent.

Jack
03-10-2010, 06:20 PM
Call me old school if you like, but I think a good dose of Cytoxan might be just what you need. In most cases, the stuff works and as you know, we are not all falling down with cancers yet. Although it's always a possibility. ;) Deal with it when the time comes.

I'm so glad that we have our Health Service here in the UK, it may have its faults, but has served me well and not denied any treatment that I needed. Why there is so much opposition to such a scheme in the US is beyond the understanding of us Brits.

Hope you sort out your troubles soon Lola, I'm glad you decided to make yourself known.

elephant
03-10-2010, 07:04 PM
Lola, how about media attention? CNN?

JanW
03-11-2010, 12:41 AM
I have friends in the insurance business, Lola, and they have always suggested that state insurance commissioners are incredibly receptive to hearing about these kinds of cases. Also, is your insurance provided by an employer -- they may be able to argue your case on your behalf.

In any case I wouldn't give up. I've never had an insurance company not cave if I were simply willing to keep pressing and pressing to get to the bottom of things.

Sangye
03-11-2010, 12:57 AM
Lola, you'll definitely get better at standing up for your rights and needs as you live with Wegs. Being assertive is very different from being confrontational. It might help to remember that none of those people-- most especially insurance folks-- are likely to even be thinking about your case, the pain they've caused you, the stress and the outcome of your illness after they hang up the phone. They go right back to their lives and you're stuck with the consequences. This has been useful for me to remember, though I had a hard time believing it in the beginning. Of course I thought everyone was as concerned about my health as me. Not so!

I don't agree that you should just accept cytoxan. The short and long-term risks with that drug are enormous. Wegs specialists are very anxious to move Weggies away from it whenever possible. If a Wegs specialist felt ctx was a better choice for you then fine, you take the risk. But that's not the case here. You're not being given a choice.

Jack, our country's fear of universal health care is completely beyond me, too. A study came out last year that reported 45,000 people die every year in the US because they lack health insurance. Don't get me started...

Lightwarrior
03-11-2010, 09:11 AM
Lola,
As a nurse I am sure that you have walked across hot coals more than once to get something your patient needed. The patient advocate role is built into us....now you must act as your own advocate. Imagine that you are one of your patients and getting the run around...GO GET UM.

Jack and Sangye,
The fear of universal health care has me bumfuzzled also, back in the early 80's I worked with a group to introduce legislation for Universal Health Care in New Mexico. You would have thought we were advocating to have everyones first born child slaughtered. The legislatures that introduced the bill had death threats. The misinformation that is out there hits people at an emotional level and it is hard to fight. I hope we get real reform soon.

Sangye
03-11-2010, 10:41 AM
You would have thought we were advocating to have everyones first born child slaughtered.
This really got me laughing. You've got a great sense of humor, Lightwarrior! :D

Doug
03-17-2010, 05:03 AM
Jack, our country's fear of universal health care is completely beyond me, too. A study came out last year that reported 45,000 people die every year in the US because they lack health insurance. Don't get me started... [to quote Sangye]

Me either. Bugger, bugger, bugger... There. I mostly dumped it from my system, and pretty much offended everyone in the English-speaking world.

Lola, keep on your quest. Remind the *******s ( kind name for these ignorant protectors of the insurance company's sovereignty over their clients) that 92 people in 100 survive Wegener's granulomatosis for at least 2 years, but 8 don't, and you don't have the time to find out if you are one of the 8 in a 100. Remind your husband of this, too, because he has to take on a role here when you haven't the strength to do it. Mostly, you won't have the strength for it, and taking on the baddies is too stressful. Stress may exacerbate what ails you, as you well know. As a fellow weggie, I know it does cause me problems.

Unfortunately, the people running the USA tend not to be the "Mr. Smith Goes To Washington" idealists who vote for what their country needs, but the wussy careerists who will have their government health care plans and pensions, regardless of what the people they are constitutionally charged to represent have. Jack, maybe all of us weggies in the USA need to move over there!

Sangye
03-18-2010, 12:34 AM
Jeff-- most of us know who sees which doc because we all recommend them to each other (or warn them not to go if they're a bad egg). I'm sure Phil thought it was a way to connect a member to you if they have questions about that doc.

It may be too personal for you and that's okay. Not everyone wants all their info out there, after all. Each of you can delete your post and it'll be removed from the forum. :)

JanW
03-18-2010, 12:50 AM
I know that when I posted the name of my surgeon I was greatly comforted to see someone come on and say that they had the same exact surgery 3 or 4 times with him. I can certainly understand when people think info is too personal (I'm sure some here use their real names and some not), but just putting it out there that to us newly diagnosed, actually be able to 'vet' a doctor through a patient who has had WG for longer is incredibly helpful.

elephant
03-19-2010, 02:37 AM
I am thankful that everyone here has put names of doctors on here. My rheumatologist got a hold of Carol Langford first and then when I saw her name mentioned on this forum...I knew she was good. It is so important that we communicate like this because are disease is so rare. The nurse's who took care of me today had to look up Wegeners disease and asked a lot of questions. I thought that was great.

moyan
03-19-2010, 02:59 AM
So nice to see you El. Do you have a laptop at hospital or are you home already? Whatever case, I wish you a fast recovery and less trouble than before. :)

elephant
03-19-2010, 06:24 AM
I got home from the hospital around 10am. Feeling better today. Yesterday kinda freaked me out. I felt like Linda Blair from the movie "Exorcist"! Never really watched the whole movie...a nurse told me I looked like her when I was 16 yrs old.

Sangye
03-19-2010, 06:33 AM
Good timing for a nurse to say you resembled Linda Blair! :D