I brought my laptop w/ me to the infusion so I'm getting it as I type. So far the only problems have been headache and for some reason my oxygen was getting low and I could barely move or stay awake I got so tired. But as soon as they put me on some oxygen I felt much much better.
I still have several more hours to go at least. Kinda concerned why I'd be having low oxygen problems with it, but I'll keep you all posted.
Love,
Lauren
Yes, keep us posted Lauren! I hope this helps you to feel better soon!
Quick update: Just got home. Low oxygen problems resolved as soon as the infusion finished. Right now I just kinda hurt all over and feel kinda like I have the flu. Exhausted. Hoping to get some sleep soon. Get to do it all again in 2 weeks. heh <3 Lauren
Lauren, I just finished my second infusion two weeks ago and im feeling bad still. I had terrible back pain right after, that is just going away, but everything else seems worse than before..hope you have better luck!!
Keeping you in prayer dear! Kimi
Thanks everyone for the well wishes!
Today i feel pretty horrible. Like I have a very very bad case of the flu and a mild headache and a bit of nausea. I hope I feel better in the next few days because i just have so much to do!
The doctor said that between 3-4% of people have oxygenation problems with Rituxan infusions, so I guess I'm just one of the lucky ones. Anyway I get to do it all again on July 1st.
Falling asleep so I'm going ot take another nap.
<3 Lauren
Hi Lauren
Happy napping and I hope you feel somewhat better soon.
Take care - Scottie :)
Hi Lauren. Thanks for posting. I hope you feel better soon.
I am in such a quandary about whether to try rituxan. It is the next/last thing for me to try. I have maxed out on cytoxan awhile ago and have been on all the oral immunosuppressants with mixed results. They hold most things at bay but not my leg myopathy. And we don't even know despite our best efforts to find out- whether the worsening myopathy is due to an active disease process or progressive degeneration due to previous CNS damage (which rituxan would not help)On the one hand MD's and nurses keep reassuring me about its safety and low side effect profile. On the other hand that is not necessarily what I read on line.
To top this off today I was getting my monthly methylprednisone infusion and as I was finishing up the woman next to me was in the midst of having a reaction to rituxan-headache, chills, shaking, low BP. I know they started her out slowly, gradually increasing the rate. The reaction occured 2 hrs into the infusion.
When I left they were still tending to her. I plan to try to find out tomorrow when I go back for my 2nd dose of steroids how things resolved and tease/seriously ask my nurse about whether she still stands by her statement.
I was having increasingly severe lower back pain, so I called the on call rheumy about it since it's a side effect to look out for. He said I am probably having a bad immune reaction to the Rituxan. He said to increase my Prednisone for a few days starting with 20mg twice a day. He also said to take extra pain meds and xanax to help me sleep. I took my first extra dose of 20mg this evening and already feel a tad better already though my lower back still feels at least as bad as when I've had double kidney infections.
Just thought I'd give you all an update while I wait for the pain meds and xanax kick in so I can go to sleep.
<3 Lauren
Hi everyone
I haven't tried Rituxan (yet) but I've had 9 months on CellCept which didn't help. Now I'm about to start a course of Cytoxan/cyclophosphamide.
Ruth's hit the nail on the head - is that just a UK expression?! - with her query about whether worsening myopathy is due to an active disease process or whether previous cns damage just gets progressively worse. How can we tell? My neuro can't decide whether my 'episodes' are mini strokes or some form of epilepsy. It seems to me that they have all the characteristics of strokes and after-stroke damage but he's not satisfied with that explanation. So it means more tests ...
If it's all due to an active disease process then further treatment makes sense, but if not then what are our options? Any thoughts?
Love to all - Chickpea
Lauren,
I also had severe back pain, especially a week after my infusions. I did take more prednisone, which helped a bit. Now, after few weeks, the back pain is almost gone.
For those who still arent sure about rituxan, the only thing I can say that really helped me was to have it run for 8.5 hours at a slow, steady pace...with the premed's.
150mg sole medrol, benedryl, tylenol, and of course, IV saline throughout the entire infusion.
I still havent heard any great news about rituxan for sjogrens or lupus. My neuropathy pain actually seems worse,but I will wait another 2 months to see how things go?
Each person's body is so different..such a gamble, but then again, every medication is.
Gursie
Chickpea,
Have you had the cytoxan before? my rheumy mentioned that to me before.
Hi Gursie
No I haven't had Cytoxan before. I've had 9 months of CellCept, and 10 months of Plaquenil and Prednisolone (tapering down dose from 40 mg daily to 20/15 at the moment). Things are getting worse rather than better so they're going to try Cytoxan. I start pre-treatment tests next week, and then three months of monthly infusions. I'll let you know how it goes.
What other meds are you on? Have you found any analgesia that makes a difference? I've been on slow release morphine for a couple of years. For a while I was sure they'd given me a placebo but recently I've been aware that it's making a difference. I was in hospital after an accident and the nurses were commenting on how much intravenous morphine it took to affect me! Hadn't realised I'd become that acclimatised to the stuff!
Take care - Chickpea
My immunologist is thinking about "maybe" putting me on a trial of Rituxan for my autoimmune diseases. He says that the drug knocks down the B-cells and almost wipes them out but that the bone marrow does replentish them at a lower number down the road.
He said that the large number of B-cells are the reason we have the autoimmune issues. It sounds good to me but I know that he won't put me on it because of my low t-cells. The IVIG I get helps some with the infections but I don't think I want to push it. There will be more meds invented down the road if I can hang in there long enough. :o Irish ;D
Felt a LOT better today. The prednisone seems to be kicking in. I even dragged myself out to dinner and to see Up (which was wonderful btw).
Now I'm laying here with my lower back killing me again. It was worth it though. Sometimes a girl has to get out.
<3 Lauren
Hi Lauren
It's good to hear that you had a better day yesterday. And you had a fun evening too! A girl definitely has to get out once in a while - even if there's a price to pay.
Hope you're feeling good today.
Thinking of you - Chickpea
Chickpea,
Im just on plaquenil..20mg prednisone..over the years tried most all of them. I did good on Imuran for a bit, until I ended up with candida in my esophagus and they stopped me. When I tried to take it again, I got violently ill? My body cant take much. Ever since my hysterectomy 2 years ago, (now menopause) things just got so much worse. I also have next to nill T-cells and have major systemic yeast all the time. I tried some IVIG infusions, but I had some terrible side effects. I used to be able to take some vicoprofen for pain, but now, my body wont tolerate any type of pain medication. I just shake and get dizzy? I remember in the hospital after my hysterectomy, they were giving me some pain med and it didnt help at all. I think they thought I was a druggie..oh well.
My rheumy thinks I may have some scleroderma coming out, something vascular is going on. I have purple-reddish elbows with sores on them, knees too.. and everytime I touch something, I bruise..doesnt feel like my blood is flowing right at all.. I guess the cytoxan works well for vasculitis. Im thinking about doing some type of biopsy to confirm. My doc is afraid to cut my skin, fearing it wont heal right, especially on the elbow?? Going to see her next week to see what's next.
lauren, funny you mentioned the lower back pain. Mine just started up again. Thank god for steriods. Going to try and take more to see if this helps. I guess our body
is reacting to the change from the rituxan. Hope its eases up.
Today is just not a good day. I'm tapering back down to my normal dose of prednisone and its making me feel all depressed and weepy. Plus I definitely over did it going to see a movie as soon as I felt better for one day over the weekend. When will I learn?
Also I started my new diet today which I'm sure isn't helping my mood or energy level.
I'm not sure I'm ready to tapper back down off the prednisone anyway from the Rituxan reaction. My back is starting to hurt again and I basically feel like I have the flu again. Sigh. I hate feeling like this. I want to feel like my normal upbeat can deal with anything life throws my way self. :'(
Lauren,
Funny, we seem to be having the same side effects..my back is killing me again and my fatigue/flu-like feeling is the worse ever!!! The extra prednisone doesnt seem to be helping either. When I up my dose, i get jittery.
I see my rheumy on monday, curious to see what she has to say, other than it could be a side effect? Just hope it gets better in time.
good luck to you though..
I say we all dress up and act like we are the cats pajamas. We will go out to eat and then to a movie and stay out til dawn and we WILL NOT become pooped, painful or pukey. Anyone else want to go. I'm having lobster and baked potatoes!!!
Enough of this being sick and being a recluse---it gets old, doesn't it. Plus---no one understands except another AI friend and heavens knows we have enough of these on this site!!!! Irish ;D 8)
Well apparently I'm still having a reaction to the Rituxan. I was at my new internist again today for a follow up. I was running a low grade fever which is SUPER unusual for me. Plus all my skin has been bright red. And on the way home my face started getting really numb. My eyes are so numb it feels so weird when I blink. Waiting for my rheumy to call me back. I'm thinking another bump of prednisone might be in order if I'm going to be in any shape to get another infusion this coming Wednesday. Blah.
In other news I decided I really need to cut back on all of my projects and try to rest more. I've basically been wearing myself out in some crazy effort to prove I can do at least as much as a healthy person. I've working myself into a super big flare and I need to stop. So I'm trying to figure out how to get out of some commitments.
Also my caregiver Sarina is leaving. She got an amazing career opportunity 6 hours away. I am really happy for her, but now not only am I loosing my best friend, but I have to try and find a replacement caregiver.
:'(
-Lauren
UPDATE: Spoke to my doctor and he said it was a really good thing I called and put me on a whole bunch more prednisone to calm down this adverse reaction. He thinks this will calm things down a lot... just in time for Wednesday's infusion...
Lauren,
Im still having horrible lower back pain..feels like my entire spine is inflammed. My fatigue is still pretty bad. So your doc thinks you should get
another infusion? I would be a bit concerned about that...seems like your body is reacting big time to the rituxan, but then again, it's a chemo medication
so I guess side effects can happen. I had rituxan before but dont remember having the back pain???uhmmm. Ive been taking more and more prednisone as well.
Let us know how your doing ok?
Gursie
Hiya Gurs,
Sorry your still hurting so much! Yeah he didn't say anything about canceling my next infusion. I really want to go ahead with it and get it over with. But yeah my whole immune system seems to be freaking out over it. I'm just exhausted today. Didn't take my temp yet but I've got chills so... hopefully the prednisone bump will do the trick too.
My awesome new internist did a bunch of labs also just in case there's an infection or something too. God I hope not!
-Lauren
We'll, I dont blame you. I just wanted my 2nd infusion over with too. Hopefully, our bodies are just adjusting to the change. Just wish this fatigue and back pain would go away.
Will ask my rheumy on monday, but Im sure she will just tell me to take more prednisone. Good luck to you..let us know how it goes.
Gursie
Just wanted to let you all know that the extra Prednisone did the trick and I am doing much much better. Just in time for my next infusion on Wed. I'm getting nervous as it approaches. Afraid that I'll have breathing problems again.
In the meantime, I'm trying to not overdo it now that I'm just feeling better. I came up with this the other day and I keep reading it over and over to remind myself: Opportunities will still be there when I'm better & my creativity and potential aren't going away if I take a break for a while.
It's my new mantra. ;)
I'll let you know how Wednesday goes. I'll probably bring my laptop again, so I can even post during the infusion lol
I also just got a new HD Flip Cam (a tiny HD camcorder) and was thinking of bringing it with me to the infusion to document the experience for my blog. What do you think?
Love you all! *hugs*
-Lauren
Hi Lauren
So good to hear that the prednisolone has made a difference.
I love the new mantra - there are days when it's hard to remember that but it's so good to be reminded that there is a light at the end of the tunnel.
Definitely film the 'infusion experience' and let us all share via your blog.
Thinking of you - Chickpea
Gursie - let us know how things go at the rheumy tomorrow. I had a month of the most terrible lower back/hip pain which nothing could help - osteopathy, acupuncture, extra morphine etc etc - and then it gradually faded until it was 'bearable'. Then something new arrived. Ah, the gift that keeps on giving as Pooh always says!
Hope you begin to feel a little better soon. Or a lot better!
Take care - Chickpea
I'm tapering the prednisone again and subsequently had a fever again this afternoon. I suppose I should call my rheumy tomorrow to be sure I should be tapering if I keep spiking a fever and whether its okay to go ahead with the next infusion on Wed...
Does anyone know if it matters if you are still having a reaction to your last infusion when you get the next one?
I can't believe its nearly been two weeks and its only a little over 24 hours away again. I'm really nervous all over again. But I just want to get it over with.
Also... today I placed an ad to find someone to replace my caregiver Sarina. I got a whole bunch of applicants to sift through already. I can't believe how many in such a short time but I suppose there are a lot of people looking for jobs right now and working as a caregiver for someone young like me is a pretty unique opportunity and rather desirable.
I'll let you know how it all goes of course :)
-Lauren
I saw my rheumy yesterday..asked her about the back pain happening after the rituxan and she said that when you get a very high dose
of sole medrol (150mg) before the infusion, it really shocks your body a bit, and then you come down after its worn off. She also did a lumber xray
and found alot of arthritits in my spine...I have alot of bone/disc/spurs in my thoracic as well from an MRI I had done a few months ago. Not a happy spine!
I will be anxious to see what my labs look like next week.
She did say that there a drug called Savella that works great for all types of pain, including neuropathy and alot of her patients just love it.
She gave me a sample, not sure when/if I will try it.
Lauren, hope you will make it for your 2nd infusion. I felt very sick when I got my 2nd as well. I guess your doc would know best. Hope your feeling
better soon!
Gursie
So I'm in the middle of my second infusion right now... On oxygen which is making me feel soooo dry but well... I'll deal obviously. I'm also on my 3rd IV already. The first one stopped working a few hours in. The second didn't work at all. 3rd times the charm?
Got a really bad headache which got better when they turned up the oxygen. Low oxygen during it seems to be the biggest problem for me so far. And right now I just am sweating all over and feel all icky. Blah.
Been going for 5 hours already but it looks like its going to be a few more at least. I'll let know know how ?I'm feeling later.
<3 Lauren
Hi Lauren
Keep your chin up girl. You've been through far worse than this in the past AND survived it, so although it's unpleasant, it will pass.
Have you got anything to read with you? Do you ever read Jodi Picault? I just love her books. I'm guessing that you have read some of them too? What's your favourite?
Hugs for you, specialy lady.
Kathyx
Are you doing better after the infusion? I hope so - it sure seems the treatments can be as problematic as what they are intended to treat.
Genko
I'm doing ok... I'm still running a fever. But overall on the higher dose of prednisone I've been a lot better than after the first infusion. Much less tired than last time. I kinda overdid it this weekend again though. Went out a few times cause its Sarina's last weekend w/ me. I'm going to miss her so much. She leaves Wed.
I start tappering the prednisone again tomorrow. I'll see if I can tolerate the lower dose.
Thanks for all the continued support!
<3 Lauren
P.S. I took a video of my infusion as it was happening. Should have a video of it up on my blog soon!
Hi Lauren,
I hope you are feeling better soo. Do you premedicate? For my IVIG infussions my rheumie has them put Decadron & Benedryl in my IV before starting the ifussion. My friend who has lymphoma also gets it before her chemo. It made a big difference for both of us.
Good luck,
Patricia
We'll, after 6 weeks from my last rituxan, still feeling worse than ever!!! what the heck!!! I had some labs done last week and my ANA titer jumped to 1:2560 now?
Not sure if this aggravated something...my doc thinks it was the huge steriod infusion that set this off..hope in time it gets better. I guess I will have to bump up my prednisone.
Lauren, hope your feeling better soon.
Gursie
Gurs,
Wow I'm so sorry this isn't working out for you! That's horrible :( I hope you feel better soon too!
Patricia,
Yes I was premedicated. I got oral benydryl and tylenol as well as IV solimedrol.
I'm hanging in there in the meantime, but I have a bit of a sore throat this morning. I hope it's just allergy or that I was breathing through my mouth in my sleep or something! I am leaving on my trip in 10 days and I really need to feel better by then! (I'm going to a conference for the kind of game development I do for the weekend!)
<3 Lauren
Quote from: gurs on July 07, 2009, 04:51:55 AM
We'll, after 6 weeks from my last rituxan, still feeling worse than ever!!! what the heck!!! I had some labs done last week and my ANA titer jumped to 1:2560 now?
Not sure if this aggravated something...my doc thinks it was the huge steriod infusion that set this off..hope in time it gets better. I guess I will have to bump up my prednisone.
Lauren, hope your feeling better soon.
Gursie
I find your doc's comment about steroids making symptoms worse. Right now I am getting 1000mg of IV steroids each day for 2 days in a row once every 4 weeks and the steroid infusions have made me feel much better. I am also on methotrexate long term.
I think my doc meant that the inital dose IV 150, then to drop to almost nothing (20mgs) is hard on the body...I guess if I were to keep getting IV's of it, I would feel much better, But I cant rely on them like that. Wow..1000mg of IV steriods? that seems like alot? how long will you keep getting them?
It's difficult to compare the doses of IV and oral steroids, because there are a few types and they have different relative content. For example, SoluCortef and Prednisone have a relativity of 1:5, so 1000 mg of IV cortisone would be the equivalent of 200 mg of oral Prednisone. There are also other forms that have different relative content.
Remember, too, the IVIG contains the immunoglobulins that actually produce antibodies, so a fresh new supply might have triggered fresh new antibody production.
Oh, thanks Linda for the info...
The video of my infusion is edited and up for viewing!
http://novelpatient.com/2009/07/07/rituxan-take-two/
(If you use Internet Explorer 7 and are having trouble viewing the page use this link: http://community.novelpatient.com/blog/2009/07/07/rituxan-take-two/ )
Let me know what you think! ;D
<3 Lauren
Thanks for posting this Lauren. I was just told yesterday that this is the next course my rhumy whats me to take so its good to see what will happen.
Steve
Quote from: gurs on July 08, 2009, 05:45:09 AM
I think my doc meant that the inital dose IV 150, then to drop to almost nothing (20mgs) is hard on the body...I guess if I were to keep getting IV's of it, I would feel much better, But I cant rely on them like that. Wow..1000mg of IV steriods? that seems like alot? how long will you keep getting them?
I am doing monthly IV steroids instead of daily oral steroids b/c there are much fewer systemic side effects such as bone loss, weight gain, etc. We are now going to see whether 1000mg one day a month instead of 2 days in a row is enough but the plan is to continue monthly IV steroids indefinitely as long as it helps.
Interestingly, my steroid protocol is one that is commonly used as a maintenance treatment in MS as well.
Steve - I'm glad the video was helpful to watch and I wish you the best with your infusion!
I tried tapering the Prednisone at the beginning of the week, and my fever and back pain got worse, so now I'm back up to 25mg a day again. It would be nice to know how long this adverse reaction is going to last! Especially since I'm going out of town next week...
I've felt like I've had the flu for the last 3.5 weeks and am frankly getting tired of it. I don't like how the extra prednisone makes me feel either :(
The stress of Sarina (my caregiver) leaving (as well as some other extremely stressful events) isn't helping I'm sure. I think I've figured out who I'm going to hire to replace her though.
Hopefully next week will be better than this one has.
<3 Lauren