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Posted 1/14/2014 10:47 PM (GMT 0)
I'm currently taking Humira and Uceris (along with other meds listed below) both of which suppress the immune system. I've had a constant fever for weeks, which is worse at night. Over the last two weeks the fever (usually 100-101) is accompanied by severe migraines that wake me up in the middle of the night. My doctor has admitted me twice over the last two weeks for a total of 8 days. After trying antibiotics and steroid the first time, then migraine meds and viral infection meds the second time, I'm right back to where I was. An hour after I got home from the hospital my fever was back after not having one for the previous 72 hours I was in the hospital. All this is in addition to my regular UC symptoms; diarrhea, light bleeding, abdominal pain, back pain, occasional nausea. I'd say the fever and migraines are part of a flare up but my doctor keeps treating me for all of these random infections he THINKS it MIGHT me. UTI, sinus infection, now some mysterious virus. Can I please get some advice from someone who has been through this?? Thanks in advance
Posted 1/14/2014 11:03 PM (GMT 0)
Kentucky gal, how long have you been on Humira? How about Uceris? Your diagnosis is relatively new - are your UC symptoms improving or are you at a standstill?

Do you think you have a sinus infection? The only way to really know for sure is to have a head CT. If it's possible that you have a sinus infection, the best treatment is 3 WEEKS of antibiotics. I don't know if that's what was done or not, and as someone with active UC taking abx is always a dangerous option.

The fevers could just be from the UC.

The headaches are a different story. Were you prone to migraine before your UC diagnosis? Have you been tested for mono?

I developed migraine in my 40s as I started perimenopause. They seem to be primarily hormonal for me, or induced by red wine or high altitude. I just started using imitrex and it seems to work alright.

Given your diarrhea, is it possible you are dehydrated at home? At the hospital they are probably putting fluids in you all the time.
Posted 1/14/2014 11:27 PM (GMT 0)
Did you have stool tests?? I had bad fevers on humira but it was all related to c diff.
Posted 1/14/2014 11:33 PM (GMT 0)
did you respond to any of the meds they put you on, even if eventually you didnt anymore? or has nothing helped yet?
Posted 1/14/2014 11:42 PM (GMT 0)
that fever is why he keeps treating you for infection. Autoimmune disease does not cause 101 fever. Your body is fighting something even with the humira and uceris.

What happened right before the fever? eat at a pot luck? lunch meat? any rashes? cold, stuffy nose?
Posted 1/14/2014 11:55 PM (GMT 0)
I've been on Humira for about 10 weeks and on Uceris for only about 2 weeks. My symptoms have improved over 5 months from detrimental (unable to function, eat, shower, ANYTHING) to tolerable with pain meds and pepto but now I'm at a standstill.

I think I may have had a slight sinus infection when he put me on abx for it, but it was only a little sinus pressure and he immediately jumped on it. I was on a 5 day abx (zpak?) but I couldn't handle the stomach pain it caused so I didn't take the last day. I went back to the doctor a few days later and he asked if I had any symptoms of a UTI and I told him I had a little bit of bladder pain so he immediately put me on abx for that, but he said it would also cover the sinus infection. That was a 3 day abx. That seemed to help some but then I got bad off again so I went back to his office and he admitted me to the hospital. He pumped me full of abx and steroids as usual, and let me go home after four days. A few days later the migraines started (fever got worse) and after the second night I couldn't handle it anymore so I went to the ER. He was doing his rounds in the hospital and I knew he would admit me anyway. The ER doctor (not knowing my history and refusing to listen to me when I told her my doctor was in the hospital) did Xrays of my abdomen and a CT scan of my head. Didn't show anything abnormal. He ended up putting me on acyclovir for a viral infection.

I've had headaches a lot in my life but not like this. I've had a few migraines too, but since I've been diagnosed, I've only had migraines once. I have not been tested for mono. Is that something I should request? He consulted another doctor and they wanted to test me for malaria but I've never even been outside the country. He ended up deciding against it though.

He gave me imitrex once in the hospital and that took the migraines away. I didn't have them anymore until after I got home. They're not as severe now but they're still there, especially at night.

I don't know about being dehydrated. It's possible I guess. I drink about 25 ounces of gatorade a day and apple juice sometimes. Not a whole lot of water though.

A fever, so I've always been told, means some kind of infection but it's not like I haven't had these symptoms before, so why is he constantly shoving abx down my throat? I'm just wondering if he's grasping at straws at this point? I know a fever is a symptom of UC but should I be just as worried as he is about an infection?
Posted 1/14/2014 11:59 PM (GMT 0)
I was tested for c diff several time back in Oct. Results were negative.

I've responded to the Humira and prednisone, but now I'm on Uceris because doc said he couldn't keep me on prednisone forever. I lost over half my hair and the bone and joint pain was unbearable.

I was around a lot of people through the holidays so I may have caught something then...
Posted 1/15/2014 12:04 AM (GMT 0)
This is probably way off base but my UC started when I was in the hospital for headache and fever. Thought it was a sinus infection and treated for that with antibiotics and Advil, which is when my UC started. Later found out it was EBV/Mono. Could you possibly have that?
Posted 1/15/2014 12:44 AM (GMT 0)
Fevers were a regular part of my disease for years. Their severity varied, but during the bad phases I would have 102-3F temps, chills, and be utterly debilitated. Other times the temps would be lower-grade, but I would still feel crappy. It didn't seem to make any difference if I was on meds or not: still got fevers either way.

No abscesses or infections were ever found. In 2011 I was admitted into hospital after a 105F temp on Remicade. The hospital assumed I had a deadly bacterial infection: I was put into the country's stuffiest sideroom (during a week which coincided with the only hot, sunny weather the UK had that year) and gave half a million stool samples. Also put on Metronizadole which just made me feel even worse.

I think in my case the fevers were just down to active disease which never went into remission. Post-surgery, I haven't had any fevers.

I've been prone to migraines for years and I did notice that they would often play up if my disease got (even) worse. However, your headaches sound more severe than that. Humira and Pred can cause bad migraines as a side-effect in a minority of people. Somebody over on the Crohn's board had terrible trouble with migraines after starting Humira; think she switched to Cimzia in the end.

I'm sorry, this probably wasn't a very helpful post :-/
Posted 1/15/2014 1:16 AM (GMT 0)
OK, thanks for the additional details.

1. I would ask for imitrex to keep at home. If it works, you should use it and there's no reason you shouldn't have ready access to it.

2. I would insist on a mono test. If the first one is negative, I would ask for another - it is not uncommon to test negative for mono. Pathogenkiller can advise better on which test to ask for.

3. I would not take additional abx or antivirals without evidence of infection.

4. You should be drinking more water. Aim for at least 4 big glasses per day.
Posted 1/15/2014 3:56 AM (GMT 0)
Garylouisville, thank you for the post. I'll have my doctor test me for mono.

NicCupOfTea, EVERY post is helpful and I appreciate every single one. While I was in the hospital last week my temp went up to 103. It just hasn't been that high at home since October.

Kazbern, I'll ask him for the Imitrex. I don't know why he didn't send it home with me since it helped the migraine. That should've been a given. I'll also ask him if an infection was actually found, because I'm pretty sure he said my white blood count was normal. Although, if it is a virus it may have gone undetected. I'll drink more water as well. I should be doing that anyway. Thanks for the input. Much appreciated!

Pathogenkiller, what test do you suggest I ask for? Thanks in advance.

Overall, I believe it's a combination of the UC, medication side effects, and a possible mysterious infection of some sort. I guess that's all kinda obvious though, huh? Again, thank you all for your posts! It's nice have people with my disease that I can discuss this with. I'll update tomorrow after my appointment. Hope you all get/stay well! God bless!
Posted 1/15/2014 2:54 PM (GMT 0)
There really isn't an effective treatment for mono, but it will at least satisfy you that you know the source of the fever. When I had mono at age 16 I had an unending headache for about 6 weeks, plus daily fever, followed ultimately by the gigantic swollen glands and sore throat.

There's a user here named Thoreau who has had mono with his UC and he may be able to give you his BTDT. I don't know if he was on immunosupressants tho.
Posted 1/15/2014 3:07 PM (GMT 0)
Thoreau has been on Remicade for at least a year, probably closer to two.
Posted 1/15/2014 4:09 PM (GMT 0)
Yeah, I'd make sure to push for tests for listeriosis and salmonella. Because of the humira your immune system is just so wide open.

For ebv, You want an ebv antibody test, not the monospot. It is more specific and helps you get a handle on disease course over time.

I'd also get the follow tests while you are at it.

Nasal strep and staph culture.

So sorry you feel so bad. Try and take some probiotics to help your gut flora while you sort it out.
Posted 1/15/2014 5:14 PM (GMT 0)
From this thread so far, its tough to figure out what could be the reason of your fever. Give Z-pack a shot, if you have not tried so far.

Just want to give you a couple of pointers
- I had crazy migraines at the time of diagnosis. Actually both gastric troubles and migraines started around the same time. And since many other are mentioning this, there seems to be some correlation, but your case is little better, that triptans work with you. Now the bad news is, you can not take triptans that often. There is a limit. I managed to finish up my 3 month dose is 3 weeks and my neurologist freaked out. I didn't dig into it, because none of the triptans work on my unbearable migraines.
You got to try other stuff. Give a shot to Tylenol. If it works very good. make sure to take 600mg of N-acetyl cysteine after an hour of tylenol. The reason for NAC is, its a glutathione precursor, body's own powerful anti-oxidant. Tylenol depletes glutathione. Plus, there is a good evidence in literature NAC helps with UC symptoms as well. I take 2 to 3 capsules daily.
If Tylenol does not work, give a shot to Nabumetone. Its NSAID, but gentle on gut. This is the only think that works, but doesn't trouble with my UC.

- I would cut Pepto Bismol from my routine and will give a try to Omeprazole 20mg daily for 2 weeks (then stop). Make sure to take B12 when you are on Omeprazole (even otherwise you should take at least 1000mcg daily)

- I do not see probiotics in your signature. We all use them. Give a thought on it.

None of this will probably cure your fever, at the same time, since nobody knows what the heck is causing these fever, I would consider these options under medical supervision. Many here will tell you how probiotics have helped them, and if your fever's origin lies in the gut, it will certainly help. You are the best judge here.

Good Luck.
Posted 1/17/2014 10:19 PM (GMT 0)
Well, I had written a pretty lengthy post but lost my connection so it didn't go through.

In short, I wasn't able to go to the doctor. I was too sick to get out of bed. I have another appointment next week though. My fever finally broke yesterday with Mortin, which I was also given by my GI while I was in the hospital. Trying to stay away from Tylenol, especially after seeing the latest warning on the news about the liver damage it's causing.

I was given the z-pak weeks ago. I tried it but ended up taking all but the 5th day because it made me too sick.

Why do you suggest cutting out the Pepto? I only take it occasionally when my gut symptoms are out of hand. I don't like taking medications so I kind of prefer it over adding not just one, but two pills to my diet.

Thinking about trying the probiotics. Which ones do you guys recommend?

Thanks!
Posted 1/18/2014 1:24 AM (GMT 0)

KentuckyGal88 said...
Well, I had written a pretty lengthy post but lost my connection so it didn't go through.


Yeah, happened to me quite many times. It does not auto-save on this board and software of this board is old. I made a couple of suggestions on this line, but there seems to be little interest.

KentuckyGal88 said...

My fever finally broke yesterday with Mortin, which I was also given by my GI while I was in the hospital. Trying to stay away from Tylenol, especially after seeing the latest warning on the news about the liver damage it's causing.


First, I am surprised that GI gave you Motrin. He should be well aware that its not good for you. If it helped you now, have Rx of Nabumetone 750mg, it is as good, but gentle on GI system.
With Tylenol, it is blown way out of proportion. Many pain killers are bundled with Tylenol and hence folks who don't care about what they are taking, end up taking way more than they should. Plus, every physician that I know of, is concerned about their own speciality, there is no 'whole' approach. So the patient may be taking 2 different medications from 2 prescribers, ends up taking more and finally messing liver up a big time. I wouldn't worry about this, if you are not taking any other medications and educate yourself on medications.

KentuckyGal88 said...

Why do you suggest cutting out the Pepto? I only take it occasionally when my gut symptoms are out of hand. I don't like taking medications so I kind of prefer it over adding not just one, but two pills to my diet.

Thinking about trying the probiotics. Which ones do you guys recommend?

Thanks!


Occasional Pepto is fine, but how occasional are we talking about? My only issue with these oral antacids is, the formulations contain a good amount of aluminium salts, which are not at all good for us. Plus, we, the UC subjects, have pH imbalance in GI system, so there are many things resorbed, which ideally should be excreted. Aluminium could be one of them. I do not have literate on aluminium, because nobody sees as threat, and hence nobody is interested in studies. For the sake of safety (and further neurological damage, there is some indication in Alzheimers, don't have any update), I would cut it.
If you really have an issue with heartburn, you should probably tackle it with alkaline foods. That is certainly better than pepto.

Probiotics -
VSL#3 DS
Nexabiotics
Probiotics-3
Prescript Assist
I have all these on shelf at this moment and I rotate between these. Currently Prescript Assist.
Posted 1/19/2014 5:57 PM (GMT 0)
I have been having fever (103) with crazy chills for about a week and I don't know why either. I am off of Humira for 2 weeks because I had shingles(which cleared up quick). So I can't blame it on humira. I finally collected some stool samples to turn in tomorrow. I gotta figure this out. It is debilitating.
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