I'm back

This sounds exactly like what happened to my husband last October. He was (and still is) on remicade, and he was getting over a c-diff infection, and had gotten the seasonal flu shot about a week to 10 days before his episode. He woke up one morning with a stiff neck and what he thought maybe a muscle pull in his butt. A day later it got much worse, and his knees were starting to swell. We saw his orthopedic doctor, who after looking at x-rays of his spine said he had sacroiliitis, and basically said he needed to see a rheumatologist. We saw his gatro the next day, and by then, his knee was huge, and this really alarmed the GI.

We immediately took him to the ER room and had his knee drained (at this point, they'd put him on 10mgs of prednisone daily, but it wasn't doing much). They tested the fluid from his knee, and said it was all inflammation - no sign of anything else. We managed to get an appt with the rheumatologist, and she too conducted a whole bunch of tests (CRP, Anti-CCP for RA, ana for lupus, anti-ds-dna for drug induced lupus, etc), and the only thing that came back positive was inflammation.

In the meantime, we were seeing the orthopedist almost everyday to get his knee drained, and he also got a cortizone shot to the knee. The rhuematologist put him on 40 mgs of prednisone, and we moved his remicade infusion up by 2 weeks, so he got it at the 6 week mark instead of the 8 week mark, and he got a second shot of cortizone to the knee. After doing this, his knee, his back and his neck finally stopped being inflammed and things calmed down. None of the doctors really know what happened - they said it could be some kind of reactive arthritis, or crohn's arthritis. To me, it sounded a lot more like reactive arthritis given the severity of the attack. He was on steroids slowly tapering every 2 weeks by 5mgs until March of this year. Unfortunately the steroids have left him with osteopenia, so we're trying very hard to stay away from the steroids to build bone density back up.

His rheumatologist really wanted him to start methotrexate right away, because she felt that mtx worked great for arthritis especially in conjunction with remicade and that the risks of taking both together were negligible. However, his GI said he'd prefer to not have him on both, if it could be addressed through other means. So, he had 5 month slow steroid taper, and bumped his remicade infusions to every 6 weeks. Once everything went back to normal, he went back to every 8 weeks remicade, and knock on wood, so far, he's fine.

Hang in there. Hopefully with some strong treatment, this bout of reactive arthritis will subside. My husband needed physical therapy after this episode to build strength back in that knee, because it was immobile for several weeks, and there was definite muscle attrition.

PV

Hiya pv
Wow !!!! My goodness, what a lot your poor husband went through !!! You will have to excuse my lack of all the knowledge you put down about your husbands symptoms as I was only diagnosed this march and am still trying to fathom out about this diseases !!!!

But it sounds horrendous!!!

It's been to weeks since this happened and apart from feeling very tired I feel like I'm getting slowly back to normal !!! What ever normal is !!! Lol !!!!

Iv been off work since June, firstly with a bad reaction to azaithiaprine, then gist when I felt ok and returned to work, for only three weeks, I had what my gi thought was a gall bladder problem, as I was rolling around the floor etc !!! In loads of pain, which after a scan proved there was nothing going on !!! There !!! To two weeks later, getting this from nowhere !!!!
My family always say I'm crazy !!! And now the latest thing is I'm an alien and we are here !!!! Lol !!!!

My inflammatory markers in my blood were higher coming out after I was discharged, than what they were when I was admitted as an emergency !!!! Go figure !!!! It's a massive puzzle to me!!!!
That's why I'm sooooo grateful to speak to people like yourselves on here, who have knowledge , experience etc, you help me loads and I reallyappreciate it !!!!

As far as meeds go, iv been on entocort since march, I don't feel it's making any difference as I'm getting flares every three to four weeks. After my latest admission, my gi came to see me on the ward, and stated that he will start me on mercapturine or methatrexate as soon as my knee is better, but he also has been saying this since about June, after my reaction to azathiprine !!! But I keep coming down with other things that stop me getting to take or try new meeds !!!!!

Sorry for my long reply, and I'm sooo glad to hear that your husband is doing good, that's great news for me as it gives me hope that I will get there too. I miss my job, worry about not being in work, and am getting very bored of daytime tv !!!!!

Hi Matthew
I don't know if we've ken before and I don't know if your reply was meant for me, or pv, or both, but nice to hear off you and I hope your doing ok, yourself.

By the way please don't think I'm sat here feeling sorry for myself, as I'm a really positive, very warped sense of hum or type of gal, and don't want to give you all the wrong impression. But I do wonder wether in my previous life if I was not a very nice person !!!!! As karma has come around and bitten me right on the ar** !!!!!

No offense intended !!!!!!! Xxx