Neurological issues caused by biologics
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what are the new neurological symptoms you experience since taking your medication? are they mild,moderate or severe?
I've been fairly unable to lead a normal life due to them. Have spent a month or so sitting in a recliner or laying in bed. So moderate??? I mean, I'm at least at home and not in a hospital.
Pressure in head and ears like going up in an airplane and unable to equalize ears, buzzing in head, pounding in head, bleary vision at times, pain, lightheadedness and kind of dizzy with or without activity, sensation of something shooting through my head randomly for no apparent reason or when I move my eyes up. Overall malaise. Noise sensitivity (some pitches/noise levels feel like they are stabbing my brain), visual sensitivity (as in watching certain things on tv can cause me to feel swimmy headed).
Pressure in head and ears like going up in an airplane and unable to equalize ears, buzzing in head, pounding in head, bleary vision at times, pain, lightheadedness and kind of dizzy with or without activity, sensation of something shooting through my head randomly for no apparent reason or when I move my eyes up. Overall malaise. Noise sensitivity (some pitches/noise levels feel like they are stabbing my brain), visual sensitivity (as in watching certain things on tv can cause me to feel swimmy headed).
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Is your Gi aware ?
Definitely make them aware
Have they done an mri of the brain?
Ds had an allergic reaction to remicade which resulted in prolonged tongue tingling As well as throat issues /flushing
Mri of the brain was clean
He stopped remicade but was fine on humira for over 5 years and now Stelara for almost 3 years
Good luck
Definitely make them aware
Have they done an mri of the brain?
Ds had an allergic reaction to remicade which resulted in prolonged tongue tingling As well as throat issues /flushing
Mri of the brain was clean
He stopped remicade but was fine on humira for over 5 years and now Stelara for almost 3 years
Good luck
Im sorry for what you are going through, I can imagine its difficult time. Some symptoms make me think of migraine. A month in this state is a lot. I'd contact the GI asap. Discussion with primary doc could be useful too for an opinion.
If the conclusion is that these symptoms are caused by your Biologic, your GI will probably propose another one.
If the conclusion is that these symptoms are caused by your Biologic, your GI will probably propose another one.
Yes, GI is aware. Next infusion is this week so trying to get him to kick in with some advice of some sort. I asked about a month ago if it could be a reaction to Remicade but he sort of pushed that off. Just got MRI. Brain looks OK except for one spot which Neurologist doesn't appear to be worried about. He was making sure Remicade wasn't causing demyelination and is comfortable that it isn't so didn't reco stopping/changing. He has decided to treat it like a horrendous migraine and has started me on a preventative med which joy of joy has constipation as a possible side-effect. And yes, it appears to be causing that. Also said the drug will not have any impact for 2 to 3 weeks on my head issues.
Have told GI (waiting for response) and have appointment with GP tomorrow to bring her up to speed. Needing one of them to step up with advice as next infusion is this week and I can't imagine going through another 2 months of this or worse if the Remicade is contributing to the problem.
An update to my original post:
My Dr's didn't support me in the belief that remicade was causing the issues so ended up having another infusion. One day after infusion "chronic migraine" issues kicked up again to really horrible levels and I spent the next few months in pain, laying in the floor, etc. At this point everyone agreed that it must be the remicade and I stopped treatment. I as able to wean off chronic migraine medication about 4 months after my last infusion which makes sense as the remicade was greatly reduced in my system. I still have occasional random instances of dizziness, lightheadedness, etc. but no pain and I have been told by another crohnie who had this reaction that it took about a year to completely get over the neurological issues so I'm not too alarmed. I have, however, not been on treatment for crohn's since, which is now going on 9 months and my atypical crohn's symptoms are getting pretty bad.
I'm scheduled to see a new GI in about 4 weeks and I'm concerned that they will go straight for another TNF inhibitor (humira). Anyone have any insight or research on how likely neurological reaction is from one TNF inhibitor to another? Or is my fear is baseless? Should I be fighting for a different treatment ( IL-12 and IL-23 blockers like Stelara)?
My Dr's didn't support me in the belief that remicade was causing the issues so ended up having another infusion. One day after infusion "chronic migraine" issues kicked up again to really horrible levels and I spent the next few months in pain, laying in the floor, etc. At this point everyone agreed that it must be the remicade and I stopped treatment. I as able to wean off chronic migraine medication about 4 months after my last infusion which makes sense as the remicade was greatly reduced in my system. I still have occasional random instances of dizziness, lightheadedness, etc. but no pain and I have been told by another crohnie who had this reaction that it took about a year to completely get over the neurological issues so I'm not too alarmed. I have, however, not been on treatment for crohn's since, which is now going on 9 months and my atypical crohn's symptoms are getting pretty bad.
I'm scheduled to see a new GI in about 4 weeks and I'm concerned that they will go straight for another TNF inhibitor (humira). Anyone have any insight or research on how likely neurological reaction is from one TNF inhibitor to another? Or is my fear is baseless? Should I be fighting for a different treatment ( IL-12 and IL-23 blockers like Stelara)?
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So my kiddo is prone to migraines but did not get them due to biologics
He does get them due to other meds /in controlled inflammation etc…
That said he had lots of skin issues /rashes on remicade
He did have skin issues when he switched to humira
Also no skin issues now that he is on Stelara
So ….
It’s hard to say how your body will react to the next med
He does get them due to other meds /in controlled inflammation etc…
That said he had lots of skin issues /rashes on remicade
He did have skin issues when he switched to humira
Also no skin issues now that he is on Stelara
So ….
It’s hard to say how your body will react to the next med
