Clinic appointments

[orange33]

Hello. Thankyou for all your kind replys regarding clinic appointments. I realise I just have ring now. Unfortunately I have a foot in both camps(RA -Nuero, I did not have six monthly call from RA and have not heard about my continue infushions of Ratuxamab which is organised by the Nuero doc,not the RA clinic. I have the infusions in the RA clinic though. I don't know why I feel so reluctant to phone. At the beginning of lockdown my Nuero doc told me to ring in June but I sort of hoped I would get a letter to confirm clinic appointment. So it's down to me now. Thanks again,hope my post is okay as I can only type with one finger now and the others tend to get in the way🙄 Take care.

[Hidden]

Bless you I use both hands and still have to reread and edit a number of times and still make mistakes. Unfortunately being proactive is the norm with this disease so don’t feel guilty.

[Lolabridge]

Hello fellow sufferer.

Like you I have been suffering from my RA symptoms returning because my Truxima (Rituximab) infusion should have been at the end of April and was postponed. I have had to phone the Patient Helpline and ask for help as I've been struggling. Later I sent an email with photos attached to show which joints were swollen and painful and a list of my symptoms. Today I had a call to offer me the dates for my next infusion cycle (4th and 18th of August). Hooray!

So yes, do phone and ask for an appointment to hurry things along if you are suffering. It will probably be an appointment by telephone or a videocall (my hospital is trialling the "Attend Anywhere" system). I think only newly referred patients are being offered face to face appointments as the moment so they can get a proper initial diagnosis.

I hope you can get help sorted soon but I think you will need to be proactive.

[orange33 in reply to Lolabridge]

Hi and thanks. Waiting for call back.Sec very helpful. As I have RA-PN I have foot in both camps. I really wanted to know where I am regarding on going treatment. Take care.

[Leics]

Yeah you definitely need to get in touch. I’ve had a flare for months and things have been out of control but my excuse was I lost my dad during lockdown and I neglected looking after my own needs with all the stress. I was pretty unwell before Covid hit the planet. I bit the bullet a couple of weeks ago and finally got a call from my rheumy consultant on Friday last week. I’ve been prescribed steroids for the next 10 weeks and got a random call out of the blue yesterday from rheumy nurses checking in which was a surprise because I didn’t bother to contact the nurse helpline because they can’t usually help. I’m also under immunology I haven’t heard anything from them or my GP or anyone but don’t feel you are being a nuisance if you need help. Don’t get to the point that I have and suffer needlessly for the sake of a phone call. I realise that the flare pain and suffering that I’ve put up with is down to my reluctance to phone your team aren’t mind readers be proactive or you’ll delay your treatment further. Good luck let us know how you get on.

[orange33 in reply to Leics]

Hi thanks for your time.i just made that phone call. Sec very helpful so don't feel so bad now.Hopfully things will become clear regarding on going treatmentIf needed and I can stop worrying🤔 Take care. Hope you feel better soon.

[Hidden]

Hope you get the go ahead for your Rituximab very soon.

If you are using a phone or a tablet there should be a microphone on your keypad. Press it and a big circle pops up with a mic in the middle.

I use it a lot for texts, emails, Google searches as typing flares my hands.

[orange33 in reply to Hidden]

Hi I had no idea you could do that! Not very techno minded, but will follow this up. My iPad is very old will be replaced soon. My fingers are very porely now partly due to RA and PN which is severe it's very upsetting as I enjoyed typing. Thankyou take care.

[Hidden in reply to orange33]

Have a go with the mic. It's a life saver

[orange33 in reply to Hidden]

Hi thanks for tip I will try this it's now impossible to type and very tiring just one finger😟. Haveing infusion Friday ,thank goodness I rang,whew. Thought I would have so many problems getting through. Bless you for help stay well.

[Hidden in reply to orange33]

Good luck for Friday orange, let us know how you get on.

[orange33 in reply to Hidden]

Hi I will😀