frustrated

[Bagpuss2021]

I am waiting for new medication as I need to change mine. its only taken 4 weeks so far, and I now have so much pain and have also developed a lump in my wrist.

[Boxerlady]

Sorry to hear that. 😢

Have you informed your rheumy team?

I had a similar experience when changing from Methotrexate tablets to injections due to bad advice from a rheumy nurse who told me not to get more tablets as there wouldn't be a delay swapping over. I rang the helpline and was called in for a steroid injection to tide me over - and given a full apology!

[Wobbies]

Me too. Have been waiting since February and have been warned that it might not be until July! Must admit rheumy wrote to my GP telling him this and asking him to give me a steroid shot if I request one which I probably will as my February one has worn off.

[Boxerlady in reply to Wobbies]

Oh no, that's ages! The annoying thing for me was that I would have happily kept taking the tablets as I was swapping over to get a higher dose rather than because of side effects but the original nurse didn't want me to waste the prescription!

[Wobbies in reply to Boxerlady]

Oh that really is ridiculous.

[Boxerlady in reply to Wobbies]

Yes, the head nurse who gave me the injection was very apologetic and slightly embarrassed - I suspect that the other nurse didn't last long!

[recorderplayer]

Sorry to hear this. I can only offer support by saying I'm in a similar position, having to stop methotrexate and waiting for new medication to be delivered and then for a nurse to come to show me how to use it. Not being able to take any medication is really tough when you can see and feel new symptoms developing.

I'm trying to accept this is not in my control and not spend too much time feeling frustrated. I have contacted the rheumatology nurses to let them know my position so now am just trying to take it day by day.

Sending best wishes.

[Bagpuss2021 in reply to recorderplayer]

I am worried because how fast my RA is getting bad with swelling and lumps appearing. Going to see what my GP can do as rheumatology have not been helpful. just have to wait and see

[recorderplayer in reply to Bagpuss2021]

Yes, I never realised how well methotrexate was working for me until now when I've had had to stop using it. It's like going back to before I was diagnosed. I hope you can get the communication with the delivery company sorted out and won't have to wait too long to get started.

[Runrig01]

I’m assuming this is to commence biologics. Even pre covid it was generally 6-8 weeks from starting with the blood tests and X-rays required, to nurse visiting at home. Part of this is due to them needing funding approved and many trusts only meet fortnightly to discuss funding. You should get in touch with your rheumatologist or GP to discuss steroid tablets or an injection to tide you over. I can only imagine that covid has lengthened the process 🤗

[Bagpuss2021 in reply to Runrig01]

thanks

[oldtimer2]

Our lot here in SE Wales got me onto a biologic within five weeks from the decision - the main delay was waiting for the results of the blood tests to give the all clear (no TB, hepatitis etc). I had a steroid injection to tide me over and the suggestion of increased oral steroids if required. Once they got the all clear, I went to the day hospital for the first injection, waited half an hour in case of reaction, then it was full steam ahead, get on with it. (And very good it has been too).It does require a will from everybody in the chain to do it quickly and no problems. So much can go wrong (bloods tests lost, results lost, someone off sick...)

[Bagpuss2021 in reply to oldtimer2]

I am just frustrated because I have been told my new script has been sent to the delivery company, but the delivery company say they have not received anything.

[Lolabridge]

Do let your Rheumy know how much you are suffering and ask for a Prednisolone taper programme until your nee drug arrives and gets to work.Unfortunately, our Rheumy teams are so busy at the moment they assume we are fine if we don’t shout for help. So shout!!