Confused.

[Jazz3914]

Hi everyone, I've recently been to my rheumatologist after he sent me for bone scans and 2 mri scans to find the cause of my joint issues. The results came in and he said it was confusing. The blood tests and mri scans showed nothing but the bone scans show inflammation in my hands, wrists, feet and hip but he doesn't know why it hasn't shown on the other tests. He wanted to put me on immuno suppressants but because of covid he decided to wait and just out me on strong steroids......has anyone else had this before? He seemed more confused than I was. Thanks for reading.

[Ozchick]

i had one episode a few months back (which coincided with my Rheumy appt) where I literally couldn't move without pain in every joint. He said as a first line of defence to take a short (5day) course of 10mg Prednisolone and to ring next day if there was no change. It was nothing short of a miracle for me-next day 50% better and then steadily improved over the next few days. It hasn't happened again since then and it did come out of the blue-so if it happens again I'll do the same.

[Jazz3914 in reply to Ozchick]

I've had chronic issues with my back and joints for many years, but finally decided enough is enough. He's put me on prednisone as well but its a 9 weeks course of varying amounts. Im going to start taking them tomorrow as I've had to wait due to catching a cold which turned into a severe sinus infection. Fingers crossed it makes a difference, just wish I knew what the cause was

[Piscesdreamer]

My rhuemetologist and also the Mayo Clinic put me on hydroxychloroquine for bilateral joint pain and fatigue. It works incredibly well for me and I now have my life back.

[Jazz3914 in reply to Piscesdreamer]

Thankylu for your response, I tried the hydroxychloroquine for 9 months, couldn't say I noticed much difference but the side effects were horrific for me. I've never reacted poorly to any medication in my life but it really hit me hard, nausea 24/7 and horrible skin rashes. Just wasn't worth it for me unfortunately snd they took me off of it. For some reason though I ended up with so much that I have a stock pile now!....both my sisters have recently been told they have fibro, with my older sister having connective tissue disease. She's been put on hydroxychloroquine now so I may mention her diagnoses to him and see if there is a connection.

[KellyInTexas Administrator in reply to Jazz3914]

Same! I cannot tolerate hydroxychloroquine for the same reason.

Note on pred if you’ve not had it before- it works best taken very early in the morning before cytokines are released. Cytokines are naturally released then. They cause the inflammation. ( like at 4:00 am ) Many patients have a bit of joghurt by bed and a cracker and tea - and take it- and go right back to sleep.

[Jazz3914 in reply to KellyInTexas]

I'm glad I'm not alone in the hydroxy issues, thank you for the tip. I will try to get myself up early enough to do this.