Hey everyone! It's certainly been a long time since I've been on the boards. I had been spending so much time on health related things that I just really needed to take a break and focus on other areas of my life for a while. But I've missed you guys too much to stay away forever, so I'm back! :)
I've managed to stay out of the hospital since last October! Yay! However my joint pain and inflammation has been so bad since then that I've been stuck in a wheelchair all that time as well. It's certainly been an adjustment to say the least. But lately I've been coping really well. My parents are getting divorced and are separated and my mom went back to work, so we hired a caretaker in December. She is my age and awesome. We are best friends and finding her has been one of the best things that has happened to me in a long long time.
I've been keeping really busy. I've gotten into Alternative Reality Game design and have even had my first paying gig in that. I hope to make a career of it. I've also been building social networks for organizations and companies and doing graphic design work. All from the comfort and practicality of my bed (I mounted my imac over it :D ) I've been writing a bunch again. I've been working on my novel and I started a blog (http://novelpatient.com).
However, treatment hasn't been going so well. Methotrexate didn't work and neither did the 6mp that I tried after that. I've gained about 150 pounds from the prednisone. I'm about to start Rituxin infusions. I am very hopeful that they will get me walking again, but I am also really scared about the potential side effects. Some of them sound awful - debilitating or life threatening. I mean I'd rather be stuck in the wheelchair for the rest of my life than contract a fatal brain disease as a side effect. Even so it feels like my best option at this point. I'm only 25 and I want to be able to be independent again. Does anyone have experience with Rituxin and its side effects? I just wish I could feel completely confident that I'm making the right decision.
Anyway... it's really good to be back! *hugs*
-Lauren
My gosh, Lauren, I have been wondering where you were and what you were up to. Sounds like a lot of good things have been going on in your life. So glad that you have a good caregiver.
I have not had the Rituxan although my doc has mentioned it. I have asked the nurses at my infusion center if it causes a lot of problems and they said it generally was tolerated quite well. I think that premedication helps. Make sure that you get the IV benedryl and cortisone and many places also give tylenol with infusions. The most important thing I can think of is to make sure they infuse you slowly and that you keep up a fluid intake during the infusion. I am convinced that drinking enough fluids helps to waylay misery as it keeps the blood full of water and makes for easier kidney filtration and liver metabolism. I would ask if there happens to be a fluid limitation just to be on the safe side. I always drink more fluids the day before my Privigen infusion, day of and couple days after. So far I have had only mild flu symptoms and slight headaches. Good luck and let us know how it turns out.
By the way, I think several people on this site have been put on Cellcept for neurological symptoms. Irish ;D
Thanks Irish! That's all really good to know! I'm going to write all that down as notes to ask my doctor before I get my first infusion.
That's interesting about Cellcept... I think I'll ask my rheumy and my neuro about that as well.
*hugs Irish* I've missed you!
-Lauren
Lauren, hello and welcome back! Other than the obvious concerns you're facing, it sounds like you have a great approach and system. The caregiver sounds like a prize for sure, and to hear that you are working and sharing your vast experience and wonderful attitude is fantastic!
Hi Lauren
So glad you're back! Sounds as though you've been having a stressful time since the autumn but you've managed to see the positive aspects of the changes. Good for you! How lovely to have a companion who is your age and has become a friend. Is she also interested in writing and computers?
I'm one of the people on CellCept who Irish mentioned. I have mainly cns symptoms - I was originally diagnosed with Primary Progressive MS - and I use a wheelchair most of the time too. I've been on Prednisolone, Plaquenil and CellCept since September 2008. I'm due to start Cytoxan/cyclophosphamide in July because the CellCept hasn't made much difference, but most people here have found it quite effective.
I can understand why you're worried about side effects of Rituxan. All immunosuppressants/chemo have scary side effects or associated conditions. I think you have to acknowledge them, but also weigh up the positive outcomes. I did that and then realised I really didn't have that many options!! Good doctors help so much. I have a very, very thoughtful rheumy who is delaying the new treatment until July because I have a happy and busy June planned: my son who is doing his doctorate in the USA will be home in the UK for three weeks; my eldest son has his PhD viva/oral exam; and my daughter is celebrating her 21st birthday with a 3 day family trip to Florence. So CellCept will have to suffice until then!
Do your rheumy and neuro work together or do you see them separately? I saw the neuro for two years before even meeting the rheumy but now I see him every 6-8 weeks, and the neuro only every 6 months.
Keep posting and let us know how you're doing.
Take care - Chickpea
ps I'm jealous of your imac!
Hi Lauren :)
Welcome back! :)
I can't answer anything sensibly about your treatments because I've never had any of them. Just wanted to say "hi" :) I'm glad you've found a good caregiver/friend and it sounds as though you are being really creative and constructive with the computer stuff and writing.
Good on you!
Take care - Scottie :) Oh - my son who was job hunting got a job with a company that makes Lego computer games like Lego Batman and stuff, so now he's a paid animator. :)
Hi Lauren!
Welcome back...its so good to hear that you have a great caregiver that you have become friends with.....I imagine that has helped you out quite a bit and that's great!
It's also good to hear all that you have been up to over the last few months...you seem happy despite all of the medical issues you continue to face!
Keep us posted on how you are doing when you are able to and when feel up to it!
Take care...
Since I just went through my Rituxan again, I can tell you what has def helped me. making sure they run the infusion very slow. My doc put 8-9 hours on the order and I can tell you it made all the difference. I had it before in 5-6 hours and I felt super ill. Also, make sure you have the prep, the benedryl, tylenol, solu-medrol, and very important the
IV saline running throughout the course of the infusion.
I have reactions to everything, but last week I did pretty good. Im still wiped out, but Im hoping to feel better soon. I go back next saturday
for my follow up infusion. My sjogrens, lupus just out of control and nothing is helping. Im have terrible neuro problems all over and just took a chance to see
if Rituxan will help. Im sick and tired of staying in bed all day long, as I figured It was worth the risk.
Good luck to you and whatever you decide.
gursie
Thanks so much for all your replies! Sorry it took so long for me to respond to them!
I finally got my date for my infusion appointment. It's going to be on the 17th. Apparently they are only premedicating me with Tylenol and benadryl. Does that seem right? Also my infusion time is only over 4.5 hours.
At this point I just really want to get it over with! My vertigo has come back which is really irritating and my joints have been really swollen and painful. I just want to try the med already so I can stop worrying.
My neuro and rheumy communicate from time to time but not often enough. Frankly I think some of my more general care has fallen through the cracks lately. I need to get on that but I've been working so much I haven't had the time... or the inclination.
I'll let you know how it goes...
*hugs*
-Lauren
Hey Lauren,
Another Macgirl here.
I had my first Rituxan infusion last Friday and I get the second one next Friday. My Rheumy said 3-4 hours as well, but once we got started, it was more like 7! Don't worry, the nurses will only go as fast as you can handle it. I had the Benedryl, Tylenol and a steroid for my prep, but I'm known to have a reaction to Rituxan, so they might have been extra careful with me.
I will say the thing that helped me the most is I had two amazing friends who sat with me through the whole thing and kept me company. I babbled (The benedryl makes you loopy) and they knitted and chatted with me. It really helped.
I haven't noticed a huge improvement yet, but it's still early days and I do have faith things will improve.
Good luck to you,
Heather
I just finished my infusion last weekend, and this was the first time i didnt have such severe reactions or side effects..its because the doctor put on the order
8 hours...I had it before in 5-6 hours and had reactions..terrible side effects. Just make sure you have your tylenol, benedryl, I had 150mg sol medrol, and the saline drip
through the entire infusion.
Hey Word,
I just want to say... GLAD TO SEE YA ! :),
Very glad you have a good buddy , friend, and care giver.
Sorry about your parents splitting , but I am thinking this may have brought a bout more peace in your life.
Very glad you have found a career your body can handle, and you love it also. The computer design stuff.
Can't wait to buy a book by you.
Everything sounds great for you, except the health stuff. So sorry :( . You even seem to manage that with your own personal flare.
Here is prayers and hugs for ya, kimbo
Warm welcome back Lauren,
Nothing worse than Vertigo and along with sore joints, I feel for you.
Hope it all works well when you go.. Roll on 17th!.. Hugs Dolly x
Glad to see you back. I enjoy your poetry on here. I wish you luck with the new meds. Prednisone is horrible...I gain a ton when I am on it. :P I take cellcept and have favorable results......love it as a matter of fact! I still have bad days, but I feel overall much better.
Take Care!
Vicky
Hi Lauren, How did the Rituxan go for you? I just got back from my Rhumy and she mentioned putting me on for Rituxau IV depending on the result of my upcoming liver biopsy. I'm just looking up now to find out about it. Wow...does it take that long?