First rituximab infusion

[LisaT]

I'm having my first infusion of rituximab today! Still within the first hour so we will see how it goes. I'm very hopeful that it will give me superpowers. :thumbup: I understand it will take up to eight weeks to kick in. Looking forward to some good days sometime in the near future. Any pointers or tips are welcome!

I'm concerned about losing hair. Taking biotin and collagen sporadically and will try to do so more consistently. Hoping to lower preds asap but will wait and go slowly once I feel good.

[Dirty Don]

Doses of folic acid (OTC) will curb hair loss. Best to you on the RTX.

[Susan55]

I don't know much about all these med's yet to give feedback. But one day at a time. Do you get another treatment of the rituximab? or just this one to see how it goes?

Hugs

[Pete]

I don't know much about all these med's yet to give feedback. But one day at a time. Do you get another treatment of the rituximab? or just this one to see how it goes?

Hugs

Some docs Rx 2-4 infusions at weekly intervals. I started out with 4 weekly infusions. I now get one a year. I'm in remission since 2014.

[Susan55]

Hi Pete

That is great just once a yr now and in remission. So happy for you!

[LisaT]

Thanks, Don! I'll add folic acid to my list. The nurse said she hasnt had anyone lose their hair from it but better safe than sorry.

[LisaT]

Remission is the dream! I'm so glad you're feeling well... :thumbsup:

[LisaT]

I get one more infusion in two weeks, then six months until the next round of two treatments. They said it will take a couple of months to kick in. Now that i know i can tolerate it, I'm really hopeful that it will make me feel better. I'm also hesitant to get my hopes up too much until I see how it works for me, because we're all so different. So far, I've been really sleepy but not sick. The nurses told me I'd feel flu-ish. I realized I feel no worse because I'm used to pretty much always feeling flu-ish. We will see how today goes. I'm so glad my parents are here helping out. I can sleep when I need to and they will feed amd water my kids. :cool1:

[blu4runner]

Best of luck with the infusions. Rituximab has been wonderful for me and seems to keep me in remission. As far as hair loss, I was bald before I started so no real effect on my current hair situation

[Alysia]

Beautiful Lisa, rtx is not causing hair loss as far as I know. (Ctx does).
I do have some hair loss but its because of my second disease (colitis) and out of poor nutrition.
I am glad it went well for you. Each one reacts in a different way. I get very tired after, but some friends not at all. It is true that the average time of getting better is around 8 weeks, but for some it can help faster. Or take longer. I pray it will work fast and perfect for you.
In the first month right after be careful not to be near sick peple.
Just rest and let it heal you.
Hugs & much love 💜💙💚💛❤

[elephant]

I had my second infusion of rituxan last week. No hair loss. After the first one it took a couple of weeks to start to feel better. I am on prednisone 30, cellcept 1500mg and cyclosporine. I started on prednisone 40 mg the beginning of June. Hoping you have a quick recovery!

[LisaT]

How long does the extra fatigue last? I'm still so wiped out I can't do much of anything but sleep. I'm trying to just rest because my body demands it but my mind wants to get moving so I'm just wondering when others started to get a bit of energy back after the infusion. 😊

[LisaT]

Glad you're starting to feel better! What have they told you about when andbhow quickly you should start weaning off the prednisone? I'm only on 10 mg but would like to cut it down as soon as I feel well enough.

[LisaT]

How long do you stay so tired for? It's three days after and I'm still really wiped. Can't do much. But I'll just rest until I feel up to doing some more.

[Pete]

I think a lot of the fatigue comes from crashing off the big dose of steroids and Benadryl. I'm usually a little tired for 24-48 hours after infusion. I find that a bit of light exercise helps.

[elephant]

I think the high dose of prednisone is keeping me energized, so I'm not that fatigue. Plus all the other immunosuppressive drugs I'm taking is knocking the wegners down. I say I am feeling about 75%. Hope you feel better soon.

[LisaT]

That makes sense because I've also had weird soreness and pins different from my usual. They had to give me second doses of both pred and benadryl when my ears and throats started itching and feeling full. If only prednisone wasn't as bad for us as it is good! We could just stay on mega doses and feel good.

[elephant]

I think there is hesitancy from my rheumatologist reducing my prednisone too fast. I had sinus, eye and lung involved in my last flare. Then ended up with sinus surgery in July. Total sinus surgeries:5! I was out of work for two months from coughing and sinus pressure and headaches. Still have upper right back tooth ache. Tuesday will be two weeks post rituxan infusion. Hoping it will kick in ASAP .
Hoping soon I can slowly get off prednisone.
I have not exercised in 3 1/2 months. Thinking about walking a mile today.

[Pete]

I think there is hesitancy from my rheumatologist reducing my prednisone too fast. I had sinus, eye and lung involved in my last flare. Then ended up with sinus surgery in July. Total sinus surgeries:5! I was out of work for two months from coughing and sinus pressure and headaches. Still have upper right back tooth ache. Tuesday will be two weeks post rituxan infusion. Hoping it will kick in ASAP .
Hoping soon I can slowly get off prednisone.
I have not exercised in 3 1/2 months. Thinking about walking a mile today.

It may take several weeks for rituximab to take full effect. That said, you should gradually feel better.

Go for a walk today, but don't overdo it. If you feel up to it, try again tomorrow. Just listen to what your body tells you.

[Alysia]

Dear Lisa, each one is different. For me it takes about a week to be less tired, and about a month not to feel the weired feeling in the body, something I cant describe exactly, kind of a feeling similar to being after car accident. About a month after rtx my bloods start to look better (if I flare) and 2 months later I am as good as new.

Dr. Phil was not too tired after rtx, not even at the same day that he got it. But he is The Batman.

elephant, is this your first rtx IV ? I remember reading many of your posts on old threads.

How are you both feeling today, ladies ?

Sending prayers ❤❤

[elephant]

This is my second IV rituxan, I had the first one in June. I was suppose to get another one two weeks after that but there was some issues. I am feeling better and hope to be in remission by November. i didn't have any side effects from the rituxan. It's like I never had it. Note I have been on prednisone 40 mg since beginning of June and recently reduced to 30 mg. I've had this disease since I was a child, I'm thankful to be alive today.

[LisaT]

Thanks for all your responses. It helps. I felt quite a bit better yesterday and did what I always do; too much, and not enough rest. I'm kind of nauseous today, so I'm sipping tea and chicken soup and taking it easy. I keep waking up really early and am unable to fall back asleep. I'm thinking it's from the extra doses of prednisone, and hoping it will subside soon. I will try to do some paperwork today that doesn't require much physical exertion. I get too depressed if I can't accomplish anything, but don't feel well enough to do housework. Maybe later. My parents come back today and will help with what they can. My kids are at their dad's until Wednesday, so I can keep resting before they come to me for five days. The freezer is stocked for when they're back. I'm feeling very fortunate to have such loving support, and an opportunity to achieve remission with this medication. I'm trying not to be impatient for it to take effect so I don't push myself too much.

I very much appreciate all of the advice and support I'm getting here. Thank you!:hug1:

[LisaT]

Elephant, why has it taken so long for the doctors to give you Rituxan when you've had the disease since childhood? It seems like there is a lot of suffering, and potential damage, while Weggies have to 'fail' other medications and wait for approval for this one. I'm sure it's a common issue with many diseases and medications. It just seems inconscionable to me that this is the case. I wish the doctors and drug companies would make it available to everyone who needs it and recoup their costs / make their profit from the health care systems, insurers etc. Without making patients wait and suffer. I hope to do some writing about this issue when I have enough energy to take on more than my own life and responsibilities. Maybe I will start a new thread to ask about others' experiences in this regard. I've been asking for Rituxan for about two years before my rheumy decided it was time to apply because I've failed a second combination of meds. I've been ill and unable to work for seven years. It's affected my parenting, my marriage (doomed anyways but if I were less ill I would have had the energy and stronger self esteem to leave him sooner), every aspect of my life's. As I'm sure you all know. I can't really imagine a cancer patient being made to wait for chemo while they receive other less costly medications that are more toxic and less likely to help (although i may be ignorant and this likely does happen in some health care systems). I think once I feel well enough I would like to advocate for more timely and less costly access to the best medications for autoimmune disease patients. Especially children! We get one childhood (as far as we know for sure). No child should have to spend it feeling crappy and having their body destroyed from the inside out.


This is my second IV rituxan, I had the first one in June. I was suppose to get another one two weeks after that but there was some issues. I am feeling better and hope to be in remission by November. i didn't have any side effects from the rituxan. It's like I never had it. Note I have been on prednisone 40 mg since beginning of June and recently reduced to 30 mg. I've had this disease since I was a child, I'm thankful to be alive today.

[elephant]

They gave me cytoxan at the children's hospital but it was too late it damaged my kidneys already and ended up with a kidney transplant many years later. My diagnosis back then was rheumatoid arthritis. Once I received my kidney I felt like a brand new person. At this tome doctors did not know what autoimmune disease I had but the immunosuppressant drugs kept the wegners some what quiet but I still had vague weird symptoms. Finally 2008 an allergist figured it out , I was flaring big time and ended up with four maxillary surgeries and lung nodule , which was removed to rule out cancer vs Wegners.
I think there is some fear with the rheumatologist who are not experts in vasculitis administering rituxan because of risk of infection and side effects. I had wegners symptom before this recent one but all the specialist in my town kept saying I had infection or asthma. Lesson learned always communicate to the wegners granulamatosis (GPA) rheumatologist if you have any weird symptoms that won't go away. I really think my home town rheumatologist didn't think I needed rituxan and I wasn't too bad in her eyes. Frustrating but thankful I have an expert at Cleveland clinic that has been wonderful and helping me get back in remission . Sorry if I sound scatter brain.
Lisa hope you start writing . You will get stronger, unfortunately this disease affects all family members.

[LisaT]

Felt crummy all day again today. It's been six days since the infusion. I wonder whether I'm fighting a cold or flu; or perhaps it's from the withdrawal after two big doses of prednisone and benadryl due to a bit of reaction. Either way, hoping for a more energetic day soon. I try not to feel useless when all I can do is rest and the chores and paperwork and legal mess pile up untouched, but it's challenging. I should just be grateful that I'm getting the meds and hopefully will get better, and have patience to let it work. I'm just hard on myself about not getting anything done.

[Alysia]

Beautiful Lisa, it makes sense that you still feel like you do. For me it also takes a week to "recover" from the IV. You also wasted some spoons the day before. So we allways "pay" at the day after.
Just imagine what a battle is going on there right now inside your body. So just rest and let it heal. Dont push yourself. You are doing the most important thing by just resting.
I would become worried only in cases of fever or rash or something unusual. Which I hope you dont have.

How are you doing today ?

I am going to get my rtx IV this wednesday so I will pay more attention how long it takes me to "recover" from the IV.

elephant, your story sounds amazing. I am curious since what age you have became sick and how was it. Did you share your story here in the forum ? Would you like to share it ? I think it can encourage all of us and especially parents to kids with wg.

[LisaT]

Thank you, Dear Alysia. I was getting concerned because from all the posts I've read, it sounds like most people feel better after a couple of days. I dont have rash or fever but I do have hot flashes. Those are normal for me but more frequent when I'm flaring or sick. Today i feel somewhat better. I woke up early and got a few things done and I'll try to ace myself so I don't overdue it. It's challenging because of course as soon as i have a bit of wnergy i want to catch up on all the things I've had to neglect, and don't know what to do first. I'm just glad I seem to be heading in a better direction. I hope your infusion goes well! Keep us posted, please. Xo

[Jaha]

Lisa,
Don't ever beat yourself up over not being able to accomplish what others seem to, after an infusion. We all have very different bodies and reactions to treatments. I have some kind of reaction to Rtx about every time, most not being really bad. I have had 20/infusions so far, I don't bounce back the next day, ever. I have also taken all the other available treatments and none of them worked to control my Wegs. I therefore have been on peds for over seven years and badly want off of them. I am wishing you all the best for a speedy remission. Just give yourself a break and rest when you feel like it and don't feel guilty for it. Please take care of yourself!

[LisaT]

Now I'm in a real pickle. My son is sick and supposed to come back to my house tomorrow. His evil soulless father is refusing to keep him (knowing the risk to me and that I can't be exposed). I don't have child care available for him and even if I Did, he would probably still come find me wherever I am. I don't know what choice I have but to wear a mask, wash my hands like crazy and pray for the best. How bad is it if I catch a cold? What else can I do? Has anyone had to be around someone sick after the infusion? Parents don't always have a choice. I'm not bouncing back yet a week after and I'm not sure what to do. Still sleeping half the day and all night. So I have a few hours of beingnup and about then back to bed. Can't believe his dad is such a vengeful #*}^<>|€* he's actually trying make me sicker. But that's another rant... just looking for any advice or guidance. :confused1::sad:

[Pete]

Since you seem to have no other options, a mask and hand sanitizer appear to be the way to go. I don't recall how old your son is, but I hope he can understand the need for no hugs or kisses. Try to conserve as much energy as you can.

Any family or friends close (and understanding) enough to help?

[LisaT]

We worked it out by my mom having a chat with him. She is staying in town a few days longer to help, and will care for my son (he's 10 years old but still very attached) during the day and his dad will keep him at night, until he's better. Phew. So relieved. I don't think my son really understands but hopefully he'll get that it's not that I don't want to be with him. I really miss my kids when they're not with me, but I won't be any good to them if I'm too sick to take care of them. I wish I lived near my family. it's amazing that they're here to help though. Thanks for the advice! Much appreciated.

[NikkiNicole]

Hiii!
Don't worry about how long it is taking you to feel better. It knocks me on my butt every single time. This time was much worse and I think it was because I felt so great before I did it.

[elephant]

Lisa, hoping you get better soon. It's really hard to tell your kids to that your sick and you need to heal. If you don't get better then you can't take care of your children. I just tell my kids I will make up to them and I love them a whole bunch.
I was surprised after my second rituxan I had so side effects.
I got my CPR lab results and they were a little elevated , so up a little from last month. So little worried, and I'm on so many immunosuppressive drugs and then got the rituxan the end of August .
As long as we communicate to our doctors if are symptoms get worse or not getting better is the best thing you can do for yourself.
Lisa let us know how your doing.

[elephant]

Alysia, I was around 12 , but my mom told me I complained of knee pain younger than that. I had pink eye as a kid that just kept coming back . The rheumatologist diagnosed me with rheumatoid arthritis at age 12. As a teenager I was in denial and lived my life as a normal person but knew someday I end up with a kidney transplant but still pretended I was normal . I'm just lucky to be alive! I've had a laundry list of surgeries and complications... But despite all the big bumps I wasn't going to let this disease get me. After my kidney transplant I became a RN and then went on to get a two college degrees. I couldn't have children so I adopted two children, they were infants when I adopted them. I still work full time but the last few months I could not work.
I learned to communicate to all the specialist and just don't stop or ever give up. There is always one doctor who will listen, just need to find the right one for you. I also started to listen to my body and that gut feeling that you get, that something isn't right.
All those children who received a kidney transplant , you can live a pretty good life! Just follow up with transplant team and nephrologist . Be compliant with your medications. I had my kidney transplant since 4/89, almost 30 years!!

[Susan55]

So glad she had a chat with him. It's so hard when the little one's don't really understand and we as mom's feel so bad. But, you have to look after you first to be able to be there for them. They know you love them and that's all that counts :) Keep smiling and lots of rest

[Alysia]

Alysia, I was around 12 , but my mom told me I complained of knee pain younger than that. I had pink eye as a kid that just kept coming back . The rheumatologist diagnosed me with rheumatoid arthritis at age 12. As a teenager I was in denial and lived my life as a normal person but knew someday I end up with a kidney transplant but still pretended I was normal . I'm just lucky to be alive! I've had a laundry list of surgeries and complications... But despite all the big bumps I wasn't going to let this disease get me. After my kidney transplant I became a RN and then went on to get a two college degrees. I couldn't have children so I adopted two children, they were infants when I adopted them. I still work full time but the last few months I could not work.
I learned to communicate to all the specialist and just don't stop or ever give up. There is always one doctor who will listen, just need to find the right one for you. I also started to listen to my body and that gut feeling that you get, that something isn't right.
All those children who received a kidney transplant , you can live a pretty good life! Just follow up with transplant team and nephrologist . Be compliant with your medications. I had my kidney transplant since 4/89, almost 30 years!!

Thanks for sharing your amazing story, elephant. You are able to live a whole life even with the wg. It is great. I am glad that you are doing so well with the kidneys transplant. Tagging gilders - to cheer him up.

[Alysia]

Good luck with the second IV today, Lisa. Sending prayers ❤ Please update us.

[gilders]

Alysia, thanks for tagging me into elephant's story.
The transplant still working after almost 30 years is amazing.
I've got an appointment with the transplant team tomorrow. I have to attend with the donor ( my dad) for tissue matching. I think we're getting close to surgery now.
I'm still afraid as my bleeding problems haven't been diagnosed yet. I saw the haematologist today. He's now checking to see if I have warfarin induced skin necrosis or Christmas Disease.

[elephant]

Hope the tissue match goes well. Keep us updated!

[Jaha]

I am wishing you all the best with your transplant. Please let us know how things are going for you. Please take good care of yourself.

[marta]

Alysia, I was around 12 , but my mom told me I complained of knee pain younger than that. I had pink eye as a kid that just kept coming back . The rheumatologist diagnosed me with rheumatoid arthritis at age 12. As a teenager I was in denial and lived my life as a normal person but knew someday I end up with a kidney transplant but still pretended I was normal . I'm just lucky to be alive! I've had a laundry list of surgeries and complications... But despite all the big bumps I wasn't going to let this disease get me. After my kidney transplant I became a RN and then went on to get a two college degrees. I couldn't have children so I adopted two children, they were infants when I adopted them. I still work full time but the last few months I could not work.
I learned to communicate to all the specialist and just don't stop or ever give up. There is always one doctor who will listen, just need to find the right one for you. I also started to listen to my body and that gut feeling that you get, that something isn't right.
All those children who received a kidney transplant , you can live a pretty good life! Just follow up with transplant team and nephrologist . Be compliant with your medications. I had my kidney transplant since 4/89, almost 30 years!!

Wow! Wow! Wow!
Of all the posts on here, this is the one that caught my eye for some reason and made me stop and read.
Unreal the path WG has taken you on, and even more unreal (amazing/beautiful/inspirational) is the way you've reacted to the beastie.
YOU my friend, need to write this down in a book or something.
People just don't get it, and they need to if anything is going to change.

Thanks for sharing this and inspiring me to get it together myself.
Massive hugs.

[marta]

Alysia, thanks for tagging me into elephant's story.
The transplant still working after almost 30 years is amazing.
I've got an appointment with the transplant team tomorrow. I have to attend with the donor ( my dad) for tissue matching. I think we're getting close to surgery now.
I'm still afraid as my bleeding problems haven't been diagnosed yet. I saw the haematologist today. He's now checking to see if I have warfarin induced skin necrosis or Christmas Disease.

Another WOW!
Your dad is donating a kidney. So unreal this group on here.

I know a man who has the oldest kidney transplant in our province. He's well into his 80's and still golfs, skis, hikes, and is a beautiful human being. He's on 15mg of pred every second day (so 7.5/day) and on Imuran, but you wouldn't know it. Best of luck with absolutely everything.

Stiskam paltzi. (The Bulgarian equivalent for crossing my fingers for you to have luck, but it's "I'm squishing my thumbs")

[luan22]

Wish you will not lose your hair anymore and will have beautiful hair

[BenHornsby]

We worked it out by my mom having a chat with him. She is staying in town a few days longer to help, and will care for my son (he's 10 years old but still very attached) during the day and his dad will keep him at night, until he's better. Phew. So relieved. I don't think my son really understands but hopefully he'll get that it's not that I don't want to be with him. I really miss my kids when they're not with me, but I won't be any good to them if I'm too sick to take care of them. I wish I lived near my family. it's amazing that they're here to help though. Thanks for the advice! Much appreciated.

Hay Lisa,

Hows your infusions going now?

I have them every 4 months and took a week to recover when i first started with them 5 years ago, but luckily now can return to work a day or two after now. I always drink a lot more when on treatment to help it pass through and make sure i push myself to walk like Pete mentioned, on the day of treatment and the day after (not far just a kilometer or so) as i think in my head it helps pump it round and keeps the circulation going???

The main symptoms i get now are tiredness and my legs feel like lead for a day or two, as i sit having the infusion for around 6-8 hours i think its like traveling on plains, sat in the same position on the infusion i need to get up and walk about when finished.

I have 2 boys under 5 and was worried about infection to start with, but seemed what ever i did and however careful i was i always seem to get hit with what they bring home from school. Although i have never had masks, always been careful with hands and washing/sanitize.

Ben :-)

[gilders]

Hi Ben,
Fortunately for me, there's always been a bed available. I can not sit in one position for more than a few minutes. I also need the toilet frequently which is another excuse to stretch my legs during the infusion. Maybe you should ask for a few toilet breaks (even if you don't really need them)?