Aching flu type feeling

[Valder]

Hi, just joined! Got diagnosed with RA and Crohn's disease 15 months ago. Just wondered if anyone else gets really achy in the evenings, almost like flu type aching joints. Can come on really quickly & I just have to take pain killers & go to bed. Rheumo nurse said its part of RA but would like to see how common this is?

[PFKAAde]

Hi Valder

Welcome to the site.

I would say very common when the disease isn't controlled. You have brought back (unpleasant) memories.

Know that it will get better, it is 'simply' 😀 a case of finding the right treatment regime for you. We are all different in how we respond to different drugs, so unfortunately there is no 'one size fits all' remedy.

You will one day look back and cringe like I do. At the moment....

Good luck.

Ade

[Valder in reply to PFKAAde]

Thanks Ade_Bell. I've been taking methotrexate for about a year but I don't think it's working. Have tried a few other meds too but can't tolerate them. It really gets me down at times but good to know I'm not on my own - hence my reason for joining this group x

[Preacherman in reply to Valder]

That's the one thing. We have to keep trying. Some of us have to simply keep looking for the right med that will work for us. For me it was Methotrexate for about 20 years, then Humira for about 4 years and now Enbrel for just about 5 weeks now, and it doesn't seem to be working, so I'll keep on keeping on and try something after the Enbrel, but I have to give it at least 12 weeks to rule it out. It's sometimes a long painful process, but we need to keep on. Blessings!

PS. Keep on and also believe we'll find that right med. Amen!

[PFKAAde in reply to Valder]

Hmm, it seems like a lifetime ago that I had the kinds of symptoms you are describing. I used to get lots of night-sweats, as you describe come over all achey and shivery. Like you I just used to take painkillers and go to bed feeling very sorry for myself.

Over time the symptoms seem to have changed for me, as mentioned the last 5 or so years have been pretty good (RA wise anyway).

The 10 before that, not so. To varying degrees. MTX took 16 weeks to work for me (if it was the MTX of course), but when it did it was pretty much overnight. The sweats and shivers improved dramatically and things seemed to settle into a more 'generally unwell' phase.

My bloods were still all over the place and I still had rampant inflammation, but nowhere near what it had been.

Then came horrible side-effects from the MTX, and lots of other attempts to find a DMARD that didn't either cause me to go to A & E due to serious adverse reactions or simply not work.

Eventually I came off everything bar prednisolone and Diclofenac as my wife and I were trying to have children and it was recommended.

Took 4 years for the effects of that to settle, and was due to eventually meeting the criteria for biologics.

Am now just on Humira (plus NSAIDS and other painkillers), and the disease is well controlled and has been for 5 years.

You may be interested to know (or may already) that failing on other DMADS is one of the qualifying criteria for biologics.

Also, you are most definitely not on your own, although you may find you get more responses over at the NRAS forum:

healthunlocked.com/nras

kind regards

Ade

[olly17man]

I have been diagnosed with o/a but strangely enough I get the flu' like symptoms in the evening too. If I wake up in the night I still feel as though I am going in for flu' but by the morning symptoms have gone again.