Agonising pain after steroid taper

[Joanna36]

Hi all. I have seroneg sjogrens, A.S and recently developed acute colitis. Been suffering with trigeminal neuropathies but nothing I couldn't handle.

Did a 5 week steroid taper from 50mg to 5mg which now on. Felt much better and colitis went away. Did feel a bit tingly in my face though and as I started tapering down this for worse. Now I am in agony. Severe sinus blockage agonising nerve pain in neck and head. My throat is in agony, very dry and tight and painful. Feels like it's the nerves doing it. I had started cellcept 4 kweeks ago. I went to a and e last night as felt something was eating me alive. If course they sent me home as have no temperature. Has anyone has this after steroid taper. Makes me think it wasn't worth it as feel so horrificly worse now. I feel I've caught a throat virus as my sins had a bad throat. This however feels like another level. Indescribable pain.

With no fever is it even worth seeing my g.p. I feel they are so useless. I fear the only option is to go back up on steroids again. But I don't know if that would only make this worse again

[Treetop33]

Sorry to hear all the pain you are going through.

I have Lupus and definitely stuck with the Pred. I can cycle down to an alternating dose of 5mg to 7.5mg but no further. Apparently withdrawals can appear very similar to your disease symptoms, which doesn't help. But that should clear up after 10 days if it is. If it isn't you may need the pred until your other meds kick in.

Many folk on this forum advocate a slower taper, so that means stabilising yourself on the lowest dose possible and go from there. @PMRPro has a good system. Particularly important once you get to 10mg and below.

[Joanna36]

Thanks both for your replies. I'm coughing loads and full of congestion so feel I've picked something up which has made the autoimmunity ten times worse.

Can anyone confirm whether you can have an infection or sinusitis yet have no temperature? I feel like I'm burning but I'm not as no temperature.

I am hoping my body is just adjusting and this will level out again. I have had a severe rebound reaction after steroids before- when I had a meth infusion for a week. What's the point, I end up worse afterwards. Hoping so much chat cellcept kicks in and helps soon. Wearing a mask 24 /7 so I don't pick anything else up

[Hidden]

Hi Jo. So sorry you too are struggling. On one of my recent posts I explained that, during the worst part of a heavy cold, I suffered excruciating pain above my left eye tooth. It was so bad I was sick and cried my eyes out - not my usual response to pain. In the morning I got an urgent apt with my dentist and he x-rayed the affected area and found a lot of inflammation clearly visible in the root that sits within the sinus cavity. He said it wasn’t infected, just very inflamed due to the virus. He suggested I take naproxen (in my drawer for very occasional use) with Paracetamol until the pain subsided and this worked well for me. To be honest I was terrified it might be another abscess as I’ve got some very dodgy root canals sitting right on my trigeminal nerve as he’s previously explained. So I was over the moon to learn that it was just nasty inflammation on one of my few “virgin” teeth! No infection but spectacular amounts of pain for about 12 hours. X