Hello my name is rudder and I have had GPA since 1991.

[rudder]

I have not been on a forum like this for a long-time. My disease has been controlled with Methotrexate since 2001 and I feel very lucky.

I had the standard treatments in 1991 with oral Cytoxan and Predisone for 2 years or so but had a flare after that and took Cytoxan intervieniously for +2 years monthly at first and then every other month after that with some Predisone as well. In 2001 I had a major flare and was put on Methotrexate and have been taking 7 - 2.5 tablets every since, once a week.

I do have some chronic kidney issues and controlled high blood pressure but not bad, so my life has been good. I am back on this forum because the Methotrexate has caused me to become anemic and my Doctors are thinking about changing my meds to Rituximab and I wondered if anybody on the forum has taken that drug and what the results have.

My Doctors have lowered my Methotrexate dose to 6 - 2.5 tablets per week. I am going to have another option with a different Doctor in a few weeks so I will now more then.

So if anyone knows someone who has/or is taking Rituximab for GPA; I would appreciate any information regarding the drug.

Thanks, rudder.

[MaxD]

Welcome rudder. I was diagnosed last year and treated successfully with Rituximab and prednisone. I did not have kidney involvement, but there are others on this forum who did and are being treated with Rituximab. I'm sure they will respond to you. You can also look at the forum on "medication" where you will find much discussion about Rituximab.

Glad to have one more long-time survivor on board!

[Pete]

Welcome aboard, Rudder!

You'll find a lot of folks on here to share the "wegs experience".

I was diagnosed a little over four years ago. I had a pretty bad flare about 14 months later. Since then, life has gotten progressively better - to the point where I'm able to live my pre-wegs lifestyle.

I had two infusions of rituxin late in '13. Both were nonevents. I had very mild fatigue the day after, but nothing that interfered with my normal activities. I've been on methotrexate for almost three years. I talked to my rheumatologist today about getting off it. She suggested that I remain on it indefinitely as her research indicates a 40% chance of a flare within a year if I come off it. I take 15 mg/wk (the minimum effective dose) and am a bit fatigued for about 36 hours afterward.

For now, Rituxin is the "big gun" to keep in reserve in case I need it.

Keep in touch!

[Jason R]

I receive Rituxan once a week for 4 weeks every 6 months at the Mayo Clinic in Jacksonville. Rituxan by itself did not do the trick for me. It was only lasting for 3 months or so. I started taking methotrexate to hold me over between infusions. I am not happy with the methotrexate though. I experience a good deal of fatigue and muscle weakness when taking it. I am switching to Leflunomide this week. We will see how it goes...

My experience with the Rituxan infusions are good however. I just wish it lasted longer. I take benadryl by injection which puts me down for a few hours. Then they push the methyl prednisone which gives you a good boost. By the time I'm done getting my infusion I'm ready to go and on the move. It is usually a productive weekend for getting things done around the house. The boost in energy is clearly from the prednisone but I try to make good use of the energy because I know it won't last.

Good luck with your treatment!

[annekat]

I haven't taken RTX, Rudder, but just wanted to say welcome to the forum. I know the med has been highly effective for many on here who have taken it, and not so much for others. I'm sure you'll find a lot of discussion of it if you do a search on here. It's been talked about a lot. I hope you'll continue to join in discussions here!

[Jaha]

I have received RTX rounds 6 times. I am a hard nut to crack, so they had me on Cellcept also. It seems to be very individual about the out come, most people have had great success with it. Welcome to the forum and I wish you all the best.

[whatthewhat]

Hi, welcome! Our daughter had it at age 14 and again at age 16. It helps her a lot. She has other meds too, but Rtx is the most effective one. If it helps, I chat onfb with someone who started taking it before it was FDA approved and it has helped him tremendously.

[loisann11]

I was diagnosed in 2013. I had pneumonia and kidney involvement and was first treated with the usual high dose prednisone etc. I did 4 IV doses of the Rituximab in May. It took about 6 hours for each one as they start you slow to make sure no problems. It did the trick and I had no major side effects from them. Prednisone side effects were nasty. I did get off of everything in December. Was doing fine. February this year I had another dose of Rituximab due to a slight elevation in white count. Not sure I really needed it or not but no side effects from it either. So I am only doing the Rituximab as my drug of choice if needed. I do labs every 3 months. I feel good but do have a whole lot of what I call "arthritis" pains. I have had spots of it for years, just more of them now. I consider myself very lucky to have caught it early and to have found a really good Dr. I hate taking pills so the Rituximab really works for me. Good luck!

[kaysee]

Welcome to the forum rudder.
I was diagnosed a year ago this month and was put on 60 mg prednisone until the rituxan treatments were approved by the insurance company. I have kidney involvement and immediately after the 4 weekly rituxan infusions my kidney function improved. However as soon as we tapered the pred to nothing I began to flare. We did another 4 weekly infusions of rituxin in October and I am doing good now. We tapered the pred again following the Oct infusions and I have been off pred since
February. It's now 6 months since the last rtx treatment and so far no flare. I see the dr on Monday and hope to find out what his plan is for continued treatment. Good luck. Rtx certainly helped me.

[brew22]

What dr. do you go to and where... thanks Susie

[brew22]

who is your Dr, I am finding so many use rituxun as a mantenance and wonder what part of the country they are doing this...

[Jayne 14]

Welcome Rudder
I can't say I know anything about Ritiuximab : but the wonderful people on this site will help & advise u
Good luck xxx


Sent from my iPad using Tapatalk

[drz]

who is your Dr, I am finding so many use rituxun as a mantenance and wonder what part of the country they are doing this...

RTX is usually used for maintenance when the usual ones like MTX, AZA and cellcept have been tried and found ineffective. We don't know what the long terms effects of RTX are so most doctors try to hold off using it for maintenance drug until it is really needed, plus the higher cost for it.

[annekat]

who is your Dr, I am finding so many use rituxun as a mantenance and wonder what part of the country they are doing this... I wouldn't think there's any particular part of the country they are doing it in, though I could be wrong. I don't take RTX but I think there are a variety of treatment protocols used by different docs to either get the disease under control or as a maintenance, and sometimes it's used in combination with other immunosuppressants. I think I've heard it said that treating with RTX is more of an art than a science, although someone might have said that about treating WG in general. I know one person on the forum who is using it as maintenance along with methotrexate, and the usual prednisone, and his doc is in Seattle. If I understand his treatment correctly, that is.

[rudder]

Hi Susie. My Doctor is Dr. Mark Pearson who is a Rheumatologist at the West Suburban Center for Arthritis in Brookfield, WI which is just West of Milwaukee, WI. He has been treating me since 1991 except when I lived in Seattle, WA for several years. He is an excellent Doctor.

I hope this may be helpful for you.

Michael

[savedbygrace]

Looks like I'm the only one but I had a bad experience with Rituximab. Sent my heart rate down in the teens, had to stop immediately after the first "push" infusion. Didn't get my heart rate back up for days. Young cavaleir nurses didn't know what they were doing (and didn't care), they did it at night in the pulmonary wing of a hospital. Not sure if it was the large concomitant dose of Benedryl that I reacted to but whatever it was... it was BAD!! My husband had to tell them to stop because in between telling myself to "stay awake!!" and sinking into a creepy slow-heart sleep I managed to tell him "I feel like I'm being put to sleep like a dog." He saved my life. The doctors were shocked that those nurses had allowed it to get that bad. I'm glad I have a strong man to advocate at my side. Otherwise I'd probably be gone!

Sadly the only alternative for me was Cytoxan. It's not the outcome I wanted, especially since I'm 29 and Rituximab showed so much promise for Wegs.

Whether it was Rituxam or Benedryll that made my heart do that... I couldn't tell you. No one knows. But I believe heart failure is one of the warnings on the label. They make you sign a waver that you understand the risks.

(Also, I never had heart trouble before that. And thankfully it was temporary and we stopped it in time!)

[annekat]

Sadly the only alternative for me was Cytoxan. It's not the outcome I wanted, especially since I'm 29 and Rituximab showed so much promise for Wegs.

I'm sorry that RTX didn't work for you, whether it was the Benedryl, or what, and thank goodness for your husband and his clear thinking. I hope Cytoxan was successful for you, as it was for me. I know it is the drug everyone loves to hate, but none of our drugs are that great for us, and I like the way CTX got in there and did the job with just pills and not having to go through the whole rigamarole of the approval, the infusions, etc. Of course, if someday I need to take RTX, I will, and I'll remember your experience. So, thanks for sharing.

[savedbygrace]

Annekat, you're so right!! I do love to hate it but I AM so thankful for Cytoxan. No infusions is def a perk. :) I was really devastated by menopause as a young wife... wanted a family, didn't want a change-of-life before 30! But miracles still happen so. Just taking one day at a time... :)

I also don't want to scare anyone away from Rituximab either.

But if it can encourage others to be aware, be prepared... I figure it's better to get all the facts/experiences out there to examine.

[savedbygrace]

Oh yes, and Cytoxan has been successful with me.

2003 6+ months CTX + lots of pred. Then four years of MTX + low dose pred.
Then FIVE YEARS of remission!! No meds!!
2013 6 months CTX + pred. Currently still on MTX, no pred.

Cytoxan has given me ten years of good results (although the first time I got hemorrhagic cystitis, the second time I was older/wiser and drank LOOOOTS of water).

I've never really shared any of this anywhere. I avoided support groups. But now it's like I'm finally realizing how helpful they can be.

Thanks AnneKat for being such a fantastic contributor!!

[savedbygrace]

none of our drugs are that great for us.

Yeah, I also wonder if Rituximab has long-term issues that we don't know about yet. Like how long was it studied in humans? Are we the guinea pigs? (I hate to bring it up but I honestly wonder this).

[annekat]

Since I was 58 when dx'ed, I didn't have to worry about early menopause or not being able to get pregnant. I can certainly see why many would have an issue there. But we have heard of some who've gotten pregnant after CTX, and I hope you may be among those if that is what you'd choose, savedbygrace!

[drz]

Yeah, I also wonder if Rituximab has long-term issues that we don't know about yet. Like how long was it studied in humans? Are we the guinea pigs? (I hate to bring it up but I honestly wonder this).

It has a short term record in treating Wegs so there is no data on, or about long term effects. This is one reasons, plus it is very expensive, that it is used only when medically necessary.

[jakekell]

Looks like I'm the only one but I had a bad experience with Rituximab. Sent my heart rate down in the teens, had to stop immediately after the first "push" infusion. Didn't get my heart rate back up for days. Young cavaleir nurses didn't know what they were doing (and didn't care), they did it at night in the pulmonary wing of a hospital. Not sure if it was the large concomitant dose of Benedryl that I reacted to but whatever it was... it was BAD!! My husband had to tell them to stop because in between telling myself to "stay awake!!" and sinking into a creepy slow-heart sleep I managed to tell him "I feel like I'm being put to sleep like a dog." He saved my life. The doctors were shocked that those nurses had allowed it to get that bad. I'm glad I have a strong man to advocate at my side. Otherwise I'd probably be gone!


Sadly the only alternative for me was Cytoxan. It's not the outcome I wanted, especially since I'm 29 and Rituximab showed so much promise for Wegs.

Whether it was Rituxam or Benedryll that made my heart do that... I couldn't tell you. No one knows. But I believe heart failure is one of the warnings on the label. They make you sign a waver that you understand the risks.

(Also, I never had heart trouble before that. And thankfully it was temporary and we stopped it in time!)


Savedbygrace

I also had a bad reaction to Rituximab, however the nurses stopped it quickly. They stopped mine after 23 minutes as I was starting to itch in my throat/ears. The nurse pumped me full of Benedryl and ended well. I ended up changing to CC to Villa-Forte' and back on MTX and still on 2 mg pred. can't get off it. I am moving back into remission so will stay with the mtx.

Mary

[Jaha]

SavedbyGrace,

I'm sorry that you had a bad reaction to RTX, I too have had bad reactions. The first reaction to RTX that I rec'd was on my Birthday in 2012 and I thought I was going to die. The reaction didn't happen during the infusion, it was hours afterward and I was in a hotel room. I woke up out of a dead sleep with coughing, throat closing off, high fever, short of breath and chills. I right away took Tylenol, Preds, Benadryl and used my inhaler, I had to do that 2 other times that night. I don't know why I didn't tell my husband to take me back to the hospital, just really stupid and stubborn of me. I called the clinic the next morning and they said the same thing, then ask me how I knew what to do. I guess somebody was watching after me from above. I have had six sets of RTX and have to have IV Benadryl, lots of Solmedrol and Tylenol, it also has to be ran really slowly. After each Tx I have to take Benadryl and Tylenol for at least 24 hrs now. It is very scary about the long term effects of RTX, but some have no other choice. Wishing all the best for a better Tx.