remicade and neurological symptoms?

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bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/13/2008 2:37 PM (GMT -7)   
I just had a horrible ER visit  - the nurses were great, but the doctor was horrible.  He came in and took one look at me and had his diagnosis without listening to me.  The first words out of his mouth were " so I hear you're suffering from dizziness". As soon as I started speaking, he spoke over me, and wouldn't listen.  I was trying to tell him I was having vision problems and weakness and tingling in my limbs that would come on for a brief time, and then go away, but he wasn't at all interested in listening to me.  He tells me my blood pressure is too high, and I should get that checked. I try to tell him I've had my blood pressure monitored regularly lately, and that I've never been considered hypertensive,  but once again it's in one ear and out the other.  Then he asks if I'm menopausal, and when I said no, he says that I may be starting! He then orders an EKG and blood work, and when they come back OK, he tells me to go follow-up with my family doctor.  Meanwhile the symptoms have continued.  I saw my family doctor, who sent me to another hospital right away, as she felt I could be having TIA's.  They check me out much more thouroughly, but still no diagnosis. I'm going to be seen by a cardiologist, and wear a holter monitor, but I'm scared. The symptoms feel exactly like when I had a severe allergic reaction to a med while in hospital a few months ago -the tingling, heavy limbs, and near blackout and then shaking afterwords, and then a spike in my blood pressure.  I was reading that remicade can cause neurological symptoms. Could it be the remicade?  I'm only taking it and nexium right now.  I also have incredible heartburn, but apparently the two EKG's done have been normal. If this has happened to other people, please let me know. 
I'm scared as it keeps happening
Thanks,
Bev
 
P.S. Sorry about the long winded post, but I wanted to vent about my mistreatment by the doctor at the ER too.  

dodger84
Regular Member


Date Joined Jan 2008
Total Posts : 37
   Posted 1/13/2008 3:53 PM (GMT -7)   
Honestly, don't take this lightly. The same thing was happening to me in addition to a beyond-severe headache and overall general confusion. I passed out in the shower and had vision problems, patricularly on one side of my body. Turns out I did have a TIA and had a large clot in my brain that was treated over the course of a month in the hospital. Stay on top of this. It is not normal to have these symptoms and it could be dangerous. Obviously there are other causes for such problems but your post hit close to home for me.

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/13/2008 7:22 PM (GMT -7)   
Thanks Dodger,
I appreciate your response I was told it wasn't TIA's as the occurances were too frequent and " I would have had a full-fledged stroke by now". They did a CT Scan and no signs of bleeding. Apparently I have an old calcification where I once bled (probably from when I had a severe concussion once), but no new signs of problems. All I know is I keep having symptoms that I described above, and I'm scared. Hopefully they'll find a cause that can be treated soon. I'm going to call my remicade coordinator tomorrow and run it by her. I've had a few wierd and wonderful health problems this year, out of the blue. I developed a auto-immune bleeding disorder where my body attacked its platelets -resulting in 4 hospitalizations and large doses of blood products (IVIG). Plus I was hospitalized for a bad infection last month (again out of the blue and never diagnosed fully -just really high white blood counts, that went down with intrevenous antibiotics). Hence, when I get this out of the blue-I start to wonder what is going on next! Maybe the monitor I'll wear early this week will show something. I just hate not knowing. I'm afraid to walk my dog too far away, in case I collapse, not to mention I won't drive my car until I know what's going on. I have to rely on my husband, and although he says it's OK, it's an additional burden on him worrying about me.

Thanks again,

Bev

dodger84
Regular Member


Date Joined Jan 2008
Total Posts : 37
   Posted 1/13/2008 8:16 PM (GMT -7)   
well i certainly hope everything works out ok - and just an added bonus, I also had my platelets destroyed (heparin-induced thrombocytopenia) & needed a whole bunch of bags of blood & platelets. Hopefully the next "out of the blue" for you is feeling great. it would be nice, anyway. you're reminding me of myself two summers ago with all of the out of the blues! get well.

tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 1/13/2008 10:47 PM (GMT -7)   
skull  i. When I was on  remicade my neuropathy sx from B12 deficiency got much worse and when I had my levels done they were low again. I asked all my docs if they ever heard of remicade causing B12 depletion, and they said no. I had been on monthly shots of B12. I am now on humira and take B12 every 2 weeks. Get a level drawn and then start SL B12 (methylcobalamin). I buy mine at whole foods and take this every few days. Have you had any resections? My neuropathy is not as bad right now since humira and last level was around 400. And my brain is a little less foggy. Lots of luck.


DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 

Post Edited (tinglebell) : 1/13/2008 10:50:09 PM (GMT-7)


bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 1/14/2008 8:38 AM (GMT -7)   
i just got taken off the remicade becasue it wasnt working and it was causing neuro symptoms. i have general body weakness, with one side worse than the other, poor balance, problems with my eyes, and tremors. my neuro is almost positive that its from the remicade. so yes, it is possible to get neurological side efffects.

bunny
Crohn's Disease Diagnosed 12/24/03 and Bipolar

Im 26 years old, and am currently only taking Levisin, Clidinium and protonix for my CD. I'm off my remicade--nervous. I am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar, Wellbutrin and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BP med. im on fentanyl patches for pain also, and i take some meds prn for my allergies, asthma, and migrianes.


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/14/2008 4:41 PM (GMT -7)   
Thanks for all the information you all have provided me with. I'm still waiting to hear from my remicade coordinator, but I feel it could be the remicade too.
Bunny -did the symptoms occur right away after infusion or later? It's been 4 weeks since my infusion, so could it still possibly be the remicade? I really like the remicade so far (although I find my resistance to infections very low) so I'll be sad if it is the cause, but I can't have this problem keep happening. I'd hate to stop the remicade though and then find that the problem is totally unrelated.

Bev

cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/14/2008 10:40 PM (GMT -7)   
mine happened a week after my infusion. i had a resection in feb 07, restarted remicade in july of 07, and then things went down the crapter...pun intended.

i had terrible terrible jaw pain...then my entire body...then it limited itself to just my legs. i was low on b12 but they werent convinced that i was low enough to be having these types of symptoms. even with b12, injection and oral, i still have a lot of leg pain. my gait is much better though...i also had one-sided weakness and that seems to have been corrected.

i think it's a combination of both...and im still convinced that something in the remicade caused the b12 deficiency to worsen.

bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 1/15/2008 4:35 AM (GMT -7)   
im not quite sure when it started but it was within the first 6 months or so. it kept getting worse for about a year and then i leveled off.

bunny
Crohn's Disease Diagnosed 12/24/03 and Bipolar

Im 26 years old, and am currently only taking Levisin, Clidinium and protonix for my CD. I'm off my remicade--nervous. I am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar, Wellbutrin and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BP med. im on fentanyl patches for pain also, and i take some meds prn for my allergies, asthma, and migrianes.


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/15/2008 4:20 PM (GMT -7)   
I'm still getting follow-up from various sources, but it looks like there might be an answer to my scary symptoms. Apparently the emergency room from the second visit reviewed my scans later, as they phoned me today and are scheduling a neurology appointment. The doctor I talked to today said there is a cyst on my CT scan that could be causing my symptoms. I'm also seeing my gastroenterologist to discuss my remicade, and wearing the Holter monitor for 24 hours to check my heart. Hopefully the cause can be confirmed from this gold standard of care. I hate having to go see so many people, but I can't keep having these symptoms.

I'm feeling a bit scared about the idea of a cyst causing these symptoms. I'm anxious to see the doctor to find out his/her opinion, and where we go from here. It might also still be unrelated.

Thanks for everyone's responses. They're greatly appreciated. Plus I still haven't ruled out remicade as a possible cause.

Bev

mkrml4
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/16/2008 1:35 PM (GMT -7)   

Hello!

I was just at the ER today and had a simular experience. The doctor had this really low voice and seemed like he tried to dismiss my symptoms even though I had high blood pressure, fast heart rate, fever, the big D, and felt very light headed. At one time, my heart rate was about 110 and within seconds it jumped to about 150 and thats when I started feeling very light headed and had chest pain, and a tingeling, burning sensation on the right side of my body. I told the doctor how scared I was and he's response is, "well the blood work didn't show anything to be concerned about!" WHAT! NOTHING to be concerned about? The nurses were not very friendly either and said, "you can sleep at home!" Like DUH if I felt good I would have, why do they think we are in the ER because we want to be!! I am very dehydrated even though I am drinking TONS of water and now I have noticed heavy limbs too. They told me I have to make an appointment with my regular doctor if I want further testing. The people at the hospital are the first ones to try to boot people out, but yet they are right there waiting for there pay check. Do some doctors and nurses even give a darn about people?? Im beginnig to think not.......


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/16/2008 3:41 PM (GMT -7)   
I really don't get why they act like you're just there to waste their time. I hate going to the hospital emergency. It's usually my husband who insists - and almost every time I end up getting admitted (so I guess that indicates I was sick). I hate when a doctor decides you aren't too bad - and then doesn't even listen to you when you try to explain what's wrong. One thing I have found since having this disease is I'm very attuned to my body, and I know when something is not right. This latest problem has scared the daylights out of me each time it happens, and I honestly thought I was stroking out. I don't go to the emergency for a runny nose (like some of the people you do see in the waiting room). I have a lot of better things to do than hang out at the emergency, thank you very much! To suggest that my symptoms could be caused by menopause was extremely insulting. I'm sure if the doctor experienced symptoms like ours he'd be the first in line to demand to be seen.

I see my GI tomorrow. He's usually pretty informative, and hopefully he can help find a solution to these symptoms. He doesn't think it is related to the cyst (he's looked at the CT scan and in his opinion it would not create these symptoms). Oh well -back to the drawing board - in the meantime I'm not sure when it's going to happen again, and that really bugs me!

OK -enough venting. Thanks for your response, and I hope you find a solution too. If you get some information, please let me know.

Thanks,

Bev

Crohns fighter
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/25/2008 12:41 PM (GMT -7)   

Hi Fellow Canadians,

Could you tell me what a Remicade coordinator is? and what services do they offer? Where are they located and what's the best way to get in touch with them?

Are they able to support in accessing drug coverage for Remicade? How do they do it? What information do they need from you in order to file for drug civerage on your behalf?

Can they arrange to get us the infusion even before I get drug coverage?

Please respond urgently.

Crohn's Fighter

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