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Posted 2/11/2010 5:16 PM (GMT 0)
Hello my friends. I have an appointment on Monday to see my rhuemy but had a question about something weird that has been happening. You know that feeling when your hand or foot falls asleep, well I am experiencing that in my face (cheeks, mouth, and chin) off and on during the day. When this happens I either turn really pale or turn really red. I get it everytime I have a Cytoxan infusion but it will usually go away after a few hours and not come back. This month it is happening off and on. The cytoxan dose was increased again (2 weeks ago) but it isnt at the highest I have had it.


Any ideas?
Posted 2/11/2010 9:19 PM (GMT 0)
NO ideas I have never had cytoxin but wanted to let you know that I experienced something similar as a medication side effect, can't recall the med but it has been suggested to me again and I remembered it then and vetoed it because it was so weird.
Posted 2/11/2010 10:16 PM (GMT 0)
Does sound like some kind of reaction or intolerance. Maybe not an allergic reaction "per se" but an inability for your body to handle certain amounts of "whatever" the culprit is for a prolonged period. I would definitely talk to the rheumy, and if you experience any throat or tongue swelling, please go to an ER! Trust me, sometimes reactions go from "hmmm, is this something to worry about?" to "uh-oh, I'm in trouble!" very quickly. Better safe than sorry! Take care!
Posted 2/12/2010 2:06 AM (GMT 0)
Hi Amy,
When I was getting Cytoxan infusions, I had some numbness as well. It continued for several months after the infusions were stopped. I'm glad you are seeing the doctor on monday. Like Fran said, don't hesitate to go to the ER if it gets worse or you have any symptoms that are abnormal. You never know with this disease what to expect.

Take care and keep us updated. You will be in my thoughts and prayers.

Babs
Posted 2/12/2010 2:08 AM (GMT 0)
(((( Amy )))) I have no experience with this but wanted to send you some hugs and prayers! Love ya
Posted 2/12/2010 12:52 PM (GMT 0)
Thanks everyone for your replies. I have asked the ladies in the chemo center during my infusions if that is a side effect and they say that they have not heard any complaints like that so I just figured I once again was an oddball.

Babs- I am so relieved to know someoneelse has experienced something simular while on Cytoxan. One more question for ya...Did you get shaky from it. Like so shaky that its hard to read your writing or people notice your hands shaking?I had this before on Pred but I am down to 40 mg and haven't had a problem with it until recently!
Posted 2/13/2010 6:14 AM (GMT 0)
Hi Amy,
I'm sorry, I'm trying to get my time frame right here. My memory is mush some days.

I don't think I had tremors while getting the infusions. A few months after the infusions were over I started having seizures from CNS.

Either during or after the seizures I started having tremors in my hands, head, arms and legs. My legs were the worst...they would bounce all over the place...causing me to fall a good bit. I still have mild tremors in my hands...my hand writing looks like chicken scratch.

I'm still wonder if the Cytoxan Infusions caused all of the above problems. It is a powerful toxic medicine. How long have you been getting the infusions?

Babs
Posted 2/13/2010 12:21 PM (GMT 0)
Since August I have had 7 infusions. Go for my 8th on Feb 25. My Rhuemy and Nephrologist are trying to get my Kidneys stable on Cytoxan because Imuran and Cellcept didnt do the trick and its taking a bit longer than it should, actually everything with the kidneys are slowly going down hill again! So I am not sure what the next step is. Each time I go I am told it will be another 2-3 more infusions by one doc and the other doc has been saying this is the last one for 2 months now. So I have no idea when these infusions will be over!
Posted 2/13/2010 12:57 PM (GMT 0)
Hi Amy. I don't take cytoxan, but I do have all the CNS problems you mentioned. I recently had a full neuropsych exam (MRI, EEG) and everything was normal. I've been having periodic loss of sensation (tongue is really weird), tremors, loss of balance for a few years now. I personally think anyone who has CNS problems should get a thorough exam. Just be prepared when you're told "It's Lupus." I hope your cytoxan goes well. Love Ya, Donna
Posted 2/13/2010 3:57 PM (GMT 0)
Hey hun I was reading this http://www.mult-sclerosis.org/JulieannesStory.html and unless I read it wrong it sounds like that is exctly what they want it to do. It wants your a/i to slow down. anyway there is the link if you want to check it out.

huuuuuuuuuuuuuuuggggggggggggggg!

http://www.mult-sclerosis.org/JulieannesStory.html

Posted 2/13/2010 6:30 PM (GMT 0)
Amy,

I'm glad you're going to see your rheumy on Monday because I know this is worrisome. I'm sending a great big hug your way.

Pat
Posted 2/16/2010 12:01 AM (GMT 0)
Hey everyone, had a great appointment today! We think it is probably from the Cytoxan!! Rhuemy said that my injection on the 25th will probably be my last one! Woohoo :)!!
Posted 2/16/2010 12:21 AM (GMT 0)
Hi Amy,
I'm glad your appt went well. I know you will be happy to end the Cytoxan Infusions. Keep us updated and take care. You are in my thoughts and prayers.

Love, Babs
Posted 2/16/2010 2:30 PM (GMT 0)
I get tingling in my face and my tongue goes numb kind of like when it's coming off novacane from the dentist. I don't take any of those med's though. I did have a TIA over a year ago.

Post Edited (louise47) : 2/16/2010 3:11:41 PM (GMT-7)

Posted 2/24/2010 5:18 AM (GMT 0)
For those of you that have face numbness/tingling and are not taking Cytoxan, have any of you figured out what yours is related to? I can't pinpoint under what circumstances my face tingles (or "vibrates" as I've tried to explain before). I told my rheumy but he didn't seem too concerned at the time... maybe because every time I see him there's a mile-long list of things I want to ask him about. It doesn't hurt, it's just really weird and definitely not normal feeling.

I'm currently only taking 10 mg Prednisone and 400 mg Plaquenil... so I doubt it's the meds? Any info helps!
Posted 2/24/2010 5:38 AM (GMT 0)
Amy, Yay! I'm glad your last injection is in a few days. I'm counting on your numbness going away after that.
Posted 3/10/2010 4:05 AM (GMT 0)
i don't know if this is helpfull, i get this!....but I am not on that drug.
Posted 11/17/2010 10:37 PM (GMT 0)
I have no answers but I am experiencing the same thing tingly numbness since lunch and the tongue just started about 30 minutes ago. I have been on imuran for about 2weeks. Never in my life have I felt this way and I don't like it! I have a call in to the doc.
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