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Typical symptoms of a flare up. Can't figure out the cause

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Crohn's Disease
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Posted 3/11/2017 2:31 AM (GMT 0)
New symptoms started to emerge which remind me of when my disease was untreated 10 years ago. I have severe muscle aches all over my body, zero energy, I feel feverish though the thermometer says it is within normal range, I need to sleep all the time, have dizziness though there is no d but c instead, nausea, my LRQ pain starts immediately once the effect of both the antispasmodic and painkilller wears off in addition to fistula drainage. I don't know whether it is related or not but my Hidradenitis Suppurativa is acting up, too. Thought it would flare up separately and not in conjunction with Crohn's.

It seems Remicade has either lost its effect or my disease is very active this time. Last time, though the infusion was delayed for 10 days, once I took it, I felt the difference and was highly energetic. I can't figure out what's wrong this time.

I'll see my GI and insist he finds out what's wrong. My disease has never impacted my work but it has this time. I asked to go on a sick leave as I can't concentrate.
Posted 3/13/2017 3:47 AM (GMT 0)
Oh no Minnie,

I had hoped the Remicade infusion would help you with these symptoms. Has your GI completed an AnswerISX test on you measuring the amount of Remicade and antibodies?

Everytime my AnswerISX showed reduced amounts of Remicade and higher amounts of antibodies I had been having the same symptoms you are having. We finally increased the dosage to maximum amount and shortened the time frame...and added and then increased my methotrexate. My GI stated if they couldn't get my symptoms under control we would have to try a new medication.

My uveitis almost always occurs when my other symptoms are acting up. It also occurs occasionally at other times when I am having no other symptoms. So I dunno...

On the Remicade infusion...my doctor told me at the very beginning that I could not be late for my infusion by a day...and if I was late once it increased the opportunity for Remicade not to work. I was late once and we are having a hard time getting it to work again. I am still praying that the nausea, night sweats, fever feeling, dizzy spells, extreme fatigue and inability to concentrate, think or remember eventually go away.

Have you spoken to your GI yet? Mine is running Answer tests every 4 weeks. My Remicade level is slooooowly rising and my antibodies are at 0. My symptoms are somewhat better but the two weeks prior to infusion are pretty awful. We are hoping that with alittle more time it will get better.

Hopefully you can take company sickleave and if needed go to a longer company leave or a disability leave if required. I know it is difficult. Try to hang in there.

Please let me know how it goes

Clo
Posted 3/13/2017 4:31 AM (GMT 0)
Clo, thank you so much. I really appreciate it.

Saw my GI, who upon examination and listening to my symptoms, found that my Crohn's is very active. He decided to let me have the Remicade infusion every 4 weeks instead of 6 weeks. No mention of upping the dose yet. He also upped entocort to 6 mg until next infusion.

I was given a sick leave for 3 weeks in the hope that things would settle down.

He mentioned that both the trough level and level of antibodies have to be measured prior to next infusion.

Hope that your remicade level rises to the therapeutic range.

Take care :/
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