Waves of flu feelings daily

[aliciars]

So my doc is at a loss as to what we should do. He is sending me to a Crohns' specialist at University of Chicago - I go in 8 days. But I'm wondering if anyone on here has any insight.

I'm finally in a sort of remission - well I WAS until today. Finally have some what formed stool, much less frequency, and no blood. Like I said, until today when the blood wanted to show itself. But I think that was because I ate a salad at lunch - had to try right???

Anyway, I'm on Humira (Oct '10) and started Imuran (Dec '10). And even before I started the Imuran I was starting to have what I refer to as "waves of flu." I could be going about my day and then be hit with flu like symptoms out of the blue. They last 2 -3 hours and then USUALLY go away on their own. NOW I get these waves almost every day. I keep track and over the last month I had this everyday but 2.

Any insight on this??? any help greatly appreciated! Thanks!

 

[pjmel]

When I first got symptoms of Crohns, I would experience the same thing - I called them my 'day of flu'. It would usually last no more than a day but definitely felt the same as when I was getting a regular flu - aching bones, sniffles, chills etc. The next day I would have no flu-like symptoms left. I found out later that this was one of the symptoms of a crohns sufferer.
I am on both Imuran and Humira as well, have been on imuran for about 10 years, humira for about 6 months and I haven't had any of the same symptoms so I can't help you there.
I think the best thing is to talk to the specialist about these new symptoms and see if they can shed some light.
Hope you feel better soon.

 

[STLGirl]

I'm not on any meds except Prednisone and I get the "flu day" at least once a week. So it narrows it down for me.........it's either the Pred or the Crohn's causing it. But I also read it's part of Crohn's.

 

[Jennifer]

One of my main Crohn's symptoms is flu like symptoms. That's when I know I'm having a flare, that and bleeding. Eating a salad doesn't cause bleeding, open wounds do. Unless that salad was a glass sculpture, I'd say you're having a flare and out of remission.

 

[e13 boy]

During the time i was on Imuran I had a mild cold within the first few weeks,
slowly it got worse until i felt like i had the flu all the time.Just getting out of bed was a real struggle.It just knocked me out.

During the 12 years of being treated with Steroids/Pentasa following diagnosis
i used to get colds on a very regular basis.Having chills,sniffles,achey & just feeling rubbish became 'normal' to my daily life.
During my 20's following the 7 ops (fistulas/abcesses) until diagnosis @ the age of 29 the colds/sniffles/aching all over just got worse year by year.
I never understood back then that my immune system was going badly wrong.

When i read the research by Dr Ivan Danhof into Aloe Mucopollysaccharides
he stated the very large molecules had powerful immune modulating properties.
Since i have have been taking Serovera AMP (Aloe Mucilaginous Polysaccarides) i have not had one cold,chill,sniffle etc & i have enjoyed complete remission from Crohn's.I feel like a new person.

 

[BLM]

Yep, I always feel like Im getting the flu. I attribute it to the disease....feel better~

 

[aliciars]

Just an update....the specialist I saw in Chicago, thinks the flu feelings were withdrawls from the prednisone. I tend to think she was right. I started having the flu feelings as I was getting lower on my taper, and then had them daily after getting completely off the prednisone. It took about 2 months, just as the new doc said, and they went away....Now unfortunately I'm back on prednisone, but only am doing it for one month vs. the almost 6 months last time....but at least I have an idea of what to expect.
Just thought I'd update for what it's worth.

 

[AndiGirl]

Oh bummer! I know what you're feeling. Many of my flare-ups feel like the flu. I'm going through one right now and my main symptoms are: fever off an on, nausea (in waves), joint pains (body aches), and fatigue. The Prednisone helps, but it also comes with side effects. I hate having to tapper off, that's when I notice the mood swings. I am glad that you are noticing a pattern. It took me a while to do that. I hate the flu like symptoms, but I know more of what to expect and am learning how to not only treat the flare, but to ride it out. Hang in there, sweetie.

 

[dreamintwilight]

Hey Alicia.

Have any of your docs suggested the possibility of you trying weekly Humira shots? Or maybe increasing your AZA dosage to help keep your flare symptoms under control? You mentioned Prednisone didn't do much to help your flare-ups, so maybe you just need to be on a stronger combination of medications?

Just a thought. I was on every other week Humira shots for only a few months when I was back in the hospital with a partial obstruction, so they put me on weekly shots and started me on 75 mg of Imuran every day. This has kept me symptom free for almost a year now and my inflammation has gone down from moderate-severe to mild.

Could be something to bring up to your docs, if they haven't already. When was the last time you had any imaging done?

 

[aliciars]

Actually I am waiting on my doc's & insurance to "allow" me to go up to weekly shots. If my 2 docs had better communication skills this ball should have been rolling 3 weeks ago. But since they don't, no one was doing anything until I started calling last week AGAIN. Ugh. Anyway....plan on calling the phrmcy in the AM to see if they've got it....then we can start bugging insurance! Lol.
However, I was sick back in Dec so I'm a little behind my shot's shipping schedule, so I've increased my shots to every 10 days - hoping that it gets me closer to the weekly level??? I'm doing a little self doctoring right now. Even put myself back on prednisone when both docs failed to return my calls. I knew that's what was going to happen anyway. Also, one doc suspects prednisone didn't work before b/c I was actually having an allergic reaction to the Lialda that looked like a flare.
Wow, guess I just unloaded there!!! And finally, yes, if the Humira doesn't show improvement at the weekly injection level - then it's time to adjust imuran......ahhhhh so fun!

 

[dreamintwilight]

Ahh, well, I hope the Pred works for you this time until you get the other medications figured out!

Don't you hate it when you have to do all the legwork? Grr.

I'll keep my fingers crossed for you!

 

[JJ_777]

Cold/flu symptoms

Hey... I've recently been diagnosed with crohns & I too have 'cold/flu' type symptoms ALL the time & have done for the past 2 years... I am a singer so it is a complete pain in the backside for performances... Didn't know it was part of crohns!! So thanks for that... I hope u r all feeling well!!!


Meds I'm on

Salofalk 4500mg per day (3x500mg tabs 3x daily)
Multivitamins

 

[debandrews]

I have had Crohns for 9 years, now. As all of you, been throught the ringer trying to find things that would keep me in remission, and out of pain. Every person with Crohns has a bit different experience, it seems...

One thing that has really helped me with the "flu symptoms", is taking daily Tramadol. (Generic Altram, w/o the Tylenol). Without this, I would have the "flu" body aches every day.

You can get 50MG tabs at Walmart on their $4. plan, which is alot better than the $120. a month I used to have to pay! I take 5 of the 50MG tabs throughout the day, but you might not need that much.

You could ask your Dr. about this. It is not a narcotic, and safer to take long term. Make sure they prescribe it in 50 MG doses, however, to get the Walmart deal.

 

[teagal]

I'm not on any meds except Prednisone and I get the "flu day" at least once a week. So it narrows it down for me.........it's either the Pred or the Crohn's causing it. But I also read it's part of Crohn's.

I have the flu feeling too and I can't take prednisone so it must be the crohns.

 

[STLGirl]

I agree Teagal, must be the Crohn's!! I wrote that post in Jan 2011 and since then I have been off Pred. and I still have flu feelings, but the worst for me now is the muscle pain. Remicade helps with that for about 3 to 4 weeks, then it wears off and the pain comes back 3 or 4 weeks before my next infusion

 

[teagal]

I agree Teagal, must be the Crohn's!! I wrote that post in Jan 2011 and since then I have been off Pred. and I still have flu feelings, but the worst for me now is the muscle pain. Remicade helps with that for about 3 to 4 weeks, then it wears off and the pain comes back 3 or 4 weeks before my next infusion

I was on prednisone and metcapturine, allergic to both, remicade they said will have same reaction.
I'm on my own for the flareup.

 

[STLGirl]

Oh bless your heart.

 

[debandrews]

I have had flu like symptoms along with my Crohn's, pretty much since I was diagnosed 10 years ago. My symptoms though, are tenderness in the spine, and a general all over achiness that makes it difficult to go about my day.

My Dr. put me on Tramadol (250mg. a day) and this greatly helps me. I don't get the flu - like achiness at all, if I take the tramadol at 5 hr. intervals. Maybe you can ask your Dr. if this would help you. It sure has helped me!

 

[teagal]

Tramadol, another med I can't take.