Left out in the cold!

[donnalouisec]

Hi everybody.

I have not been on for a while due to various reasons (too many to list)

I came off Tocizilumab at Easter due to reoccurrng neutropenia & also I was waiting for further neck surgery (still waiting for that). Anyway my rheumatologist as still been monitoring me with a view to putting me on toffacillin can't remember the name now but it's a tablet. Anyway I've been back on Tuesday but because my inflammtory markers are in the normal range they'e said no treatment even though I'm still in agony with visible disability. My wrists are bone to bone both my knees are shot & my neck hence further surgery. I have been having steroid injections monthly since Easter to help me through however they'e said I won't even have them now as there is no inflammtion in my joints.

Apparently it's now all about managing my pain now for the damage that has been done! I'm in shock as this happened to anybody else? Is this the end of the line 🤔😔

[oldtimer]

Unfortunately this is a common problem with over-emphasis on the blood results rather than looking at the patient. Often the line taken by inexperienced doctors and nurses (was this the case?). Normal inflammatory markers=no illness! Even if you are on steroids...which would affect the result.

Ask for a review, keep a record of your symptoms and a photographic record of your joints. Ask for an ultrasound of any painful joints to establish if inflammation is continuing despite normal blood tests. Keep on politely asking for help.

If you don't get any joy, you may need to ask for a second opinion as several other people here have had to do.

[donnalouisec in reply to oldtimer]

Hi Oldtimer

I had an ultra sound of my wrist 2 weeks prior to my rheumy appointment. They said there was no liquid but extensive damage! They called my wrist "puffy". Your right though it was a register who examined me, she did my dad score which was high & also said I had a lot of muscle waste above my knee.

She then brought in the head of biologic clinic who didn't examine me but decided that I didn'nt need treatment although I quote "You are obviously in a lot of pain with visible disabilities" & sometimes this just happens. When I asked what happens now she said it would be my GP to manage my pain. I was in a wheelchair with wrist splints limited movement of my neck & knees I'm devastated.. 🤔😢

[oldtimer in reply to donnalouisec]

I hope that you have a good GP who can help you fight your corner. But the main thing you can do is to keep good records and go on asking for help with your management.

[dbestdeb]

My rheumatologist told me that it is quite common for the boodwork to be normal even though the pain isn’t. She never once suggested I don’t need treatment. I’m in the US so maybe the protocol is different here. I just took a new blood test called Vectra, and while my usual tests came out normal, the Vectra showed high inflammatory markers and she added another drug based on it. Good luck to you. Maybe your GP will help.

[donnalouisec in reply to dbestdeb]

Dbestdeb

Thank you so much for your response. I'm so glad you got real treatment. I think the UK has always been behind the US. I won't be giving in easily! My husband was going to take me to the John Hopkins hospital when I was first diagnosed back in 2011 due to the lack of treatment over here. Perhaps that is an option we need to revisit xx