I have a headache

[fish]

I have had a headache for weeks now, every since my Stelara infusion so going on 10 weeks. My GI doesn't think it has anything to do with Stelara but seems a bit of a coincidence that it started the day after my infusion and got progressively worse/more constant. I stopped Remicade about a year ago because it caused chronic migraine...really really bad stuff chronic migraine. This headache isn't the same but it is constant and keeps me from sleeping, focusing, living, etc.

Anyone have any ideas? Tylenol and Immatrex do not help. And the Stelara isn't really doing anything that I can tell. Did my self inject dose on schedule and still no real improvement in crohn's symptoms. Still have my typical pain. I know it can take time but I don't know if I can continue to deal with this headache.

 

[Bufford]

When a doctor brushes off symptoms that are in relation to a new drug I am cautious. Then I make the personal decision to either stay the course or drop the treatment. A treatment is not worth it if the symptoms it causes are worse than the cause. The new pains are our body's way of telling us that something is wrong about the medication and it maybe doing more harm than good.

 

[my little penguin]

Did they give you solumedrol with your Stelara infusion ?
this is known to cause migraines
Are you still on steriods while waiting for stelara to kick in .
Stelara can take 8 months to be effective (at least for my kiddo )
Things that have triggered migraines(bad ones ) for him
Under controlled inflammation (found out he had auto inflammatory condition in addition to crohns )
Levsin
Ivig (cause aseptic meningitis) infusions
If you have aseptic meningitis type migraines head straight to ER
Steriods (iv or weaning pills or taking )
Other pills /food /stress /sleep

do you see a neurologistwho specializes in migraines ? Highly recommend one

I will say once all of the inflammation came under control (2 biologics plus methotrexate) no more migraines
Only if he misses his ilaris as in the docs try to space things out more

good luck

 

[my little penguin]

Drug-induced aseptic meningitis
The incidence of drug-induced meningitis (DIAM) is unknown. Many antimicrobials can cause the disorder (e.g., trimethoprim-sulfamethoxazole, ciprofloxacin, cephalexin, metronidazole, amoxicillin, penicillin, isoniazid). Other drugs that have been associated with DIAM include NSAIDs, ranitidine, carbamazepine, vaccines against hepatitis B and mumps, immunoglobulins, radiographic agents, and muromonab-CD3.

DIAM may recur with re-exposure to the offending agent. Green et al reported a case of lamotrigine-induced aseptic meningitis, with a second episode on rechallenge with lamotrigine. [5]

The pathogenic mechanisms of DIAM are diverse and presumably differ from drug to drug. There are two proposed mechanisms: direct meningeal irritation by the intrathecal drug and hypersensitivity reactions to the drug (type III and IV). In type III hypersensitivity reactions, the drug or its metabolite forms a complex with antibodies in the serum, in turn activating the complement cascade. In type IV reactions, T helper cells, after previous sensitization, are recruited to the site of inflammation. [6]

DIAM from muromonab (OKT3) is believed to be mediated, at least in part, by cytokine release. Why such reactions are confined selectively to the CSF compartment is unclear.

Aseptic meningitis—along with cerebral vasospasm or ischemic encephalopathy—has been reported with intravenous immunoglobulin (IVIg) therapy. [7] Jarius et al strongly suggest that in vivo activation of TNF-alpha–primed neutrophils by atypical antineutrophil cytoplasmic antibodies (ANCAs) of IVIg may contribute to these side effects. [8]

https://emedicine.medscape.com/article/1169489-overview#a4

 

[fish]

When a doctor brushes off symptoms that are in relation to a new drug I am cautious. Then I make the personal decision to either stay the course or drop the treatment. A treatment is not worth it if the symptoms it causes are worse than the cause. The new pains are our body's way of telling us that something is wrong about the medication and it maybe doing more harm than good.

An update Bufford - after attempting to get my GI to understand the severity of the migraines/headaches with limited success I ended up back at my Neurologists and back on Nortriptyline to help manage migraine pain. I also made the decision to stop Stelara, keeping my GI in the loop. Headaches started to lessen in severity and is almost gone 12 weeks from my last injection. I'm also able to stop the Nortriptyline. So feel that this is pretty conclusive that my migraines/headaches were in reaction to Stelara. Now I'm stumped. I realize I will ultimately have to go back on some treatment for Crohn's but what to do about the biologics kicking on migraine that makes life just as unbearable as the Crohn's?

 

[fish]

Did they give you solumedrol with your Stelara infusion ?
this is known to cause migraines
Are you still on steriods while waiting for stelara to kick in .
Stelara can take 8 months to be effective (at least for my kiddo )
Things that have triggered migraines(bad ones ) for him
Under controlled inflammation (found out he had auto inflammatory condition in addition to crohns )
Levsin
Ivig (cause aseptic meningitis) infusions
If you have aseptic meningitis type migraines head straight to ER
Steriods (iv or weaning pills or taking )
Other pills /food /stress /sleep

do you see a neurologistwho specializes in migraines ? Highly recommend one

I will say once all of the inflammation came under control (2 biologics plus methotrexate) no more migraines
Only if he misses his ilaris as in the docs try to space things out more

good luck

Sorry for the delayed response, but no, did not have solumedrol with Stelara infusion. Started on low dose of steroids for a very short time (a week or 2 at most) as they seemed to be causing problems/pain as well so I came off which gave a very small relief. Since then - after attempting to get my GI to understand the severity of the migraines/headaches with limited success I ended up back at my Neurologists and back on Nortriptyline to help manage migraine pain (I was literally sitting with an ice pack on my head all day). I also made the decision to stop Stelara, keeping my GI in the loop. Headaches started to lessen in severity and is almost gone 12 weeks from my last injection. I'm also able to stop the Nortriptyline. So feel that this is pretty conclusive that my migraines/headaches were in reaction to Stelara. Now I'm stumped. I realize I will ultimately have to go back on some treatment for Crohn's but what to do about the biologics kicking on migraine that makes life just as unbearable as the Crohn's? I seem to be highly sensitive to many drugs and wonder if dosage of Stelara could be the problem as I'm on the lighter end of the scale.

 

[Bufford]

Try going without medications for awhile to see how your body reacts. Take a good multivitamin daily, I prefer the gummy vitamins as they are easier for the body to absorb vitamins rather than expelling them. Take a look at your diet and avoid trigger foods, and control stress. If none of this works then take a look at treatments that target the symptoms specifically and a bottom up approach for treatments. I found that the less medications I take the better my body is.

 

[my little penguin]

There is cced (crohns exclusive diet )
study fine for those refractory to meds
Uses restrictive diet plus formula in the first 6 weeks
Then later just food
https://www.ntforibd.org/what-is-nu...rapeutic-diets/crohns-disease-exclusion-diet/
We tried it for a bit with my kiddo but he developed juvenile arthritis so going no meds is not an option
Just involves a lot of cooking -everything from scratch
Good luck

 

[newdiagnosis]

I think that Stelara does cause headaches. Tylenol helps, but may require something stronger to break the headache.