Meds change

[RosieA]

Can I just double check! Posted yesterday about maybe changing meds even during this time. Has anyone done so?

[charisma]

Do you mean discontinuing eg biologic in order to have a drug that makes you less vulnerable?

Added: checked your other post. I am not quite at changing point but unlikely to continue drug infusions. Going to heed advice given when I next speak to or see Rheumatologist. All the best with finding suitable treatment.

[RosieA in reply to charisma]

Hi. No. They think I am 'treatment failure' with MTX so lovely RA nurse discussed changing meds, potentially to a biologic. We were trying to balance risks vs general wellbeing during the pandemic. Am struggling with joints reverting to pre-diagnosis and feeling like hell on earth after MTX injections - plus have semi-dormant absess on tooth to add to delights. I erred on caution and now upon reflection thought that now might be 'the eye of the storm' and perfect time to make changes (Consultant approval notwithstanding).

[charisma in reply to RosieA]

My update above crossed with your response! x

[RosieA in reply to charisma]

Hum! I think you are right and might call back the nurse and ask her to proceed with seeking Consultant advice. The trouble with any long term disease (I suffered from endometriosis for years) is that feeling 'rough' becomes the new norm and there is a risk of accepting this. I lost over 10 years to pain - don't fancy doing the same again. Thanks for your response, it all helps to clarify my thinking. x

[charisma in reply to RosieA]

I have done the same; as you say, pain becomes the new normal, especially when it slowly worsens and we just adjust till it is no longer bearable and that’s too late to correct it in a reasonable time frame. x

[listellor]

have the nurse suggested leflimude since i had failure on mtx (Apologies on spelling) . i am waiting to see weather my combination works otherwise the only other thing is biologics which i need to go to the hospital to start ( Obviously a no no at the moment)

[RosieA in reply to listellor]

Many thanks for your response. Yes, it came up as did biologics but it would not be top of my can't wait to take list. Sorry but I do love me few glasses of red wine and I know you can't drink with it. I was hoping that since my chest X ray was recent etc that I might be able to avoid repeating some of the tests. But it is all dependent on the Consultant. What happened to you with MTX if you dont' mind me asking? They have added hydroxychloroquine to the mix but I'm not holding my breath.

[Hidden in reply to RosieA]

I am due to be reviewed as me and MTX don’t like each other however I was told to take 4 weeks off and then restart MTX on a 10day plan or 7 day depending on how I was feeling. 7days is not good so reverting to 10days. They are doing this till I can be seen by consultant as I was reverting back to start of RA without MTX and pain and joints and fatigue were awful. So they felt it was better to try to stick to MTX on 10days than nothing. So similar to you I have been told to call again in 3 weeks when they will see what they can do. I am feeling awful on MTX and awful without it

[RosieA in reply to Hidden]

Greetings fellow sufferer. Yes I have read of your struggle. It is awful, I agree. My review was cancelled!! But RA nurse has reassured me that she is able to chat to the consultant to get advice on ways forward. Trouble is I think I bottled it when biologics were mentioned (My default mode is to say No - then reflect). I was asked to reduce MTX 5 wks ago but have flared since, with some joints reverting to how I was before treatment. Last week lost 2-3 days post MTX injection. Injected yesterday, now nursing hot water bottle on R hand as it's throbbing away. Such joy!!

[Kerensa21]

Hi Rosie didn’t change in pandemic but found biologic so much better than MTX in terms of side effects & disease control, good luck whatever you decide x

[RosieA]

Thank you for this. I am beginning to feel that feeling absolutely rubbish is the new normal and to be expected with RA but it was super to hear that biologics have suited you so much better - gives me hope. x

[Elizabethhampson]

Hi Rosie,

I did because I was in so much pain for so long and I am far far better but not quite right yet. I think like any professional job if you’re experienced you know what should be done and change/ tweak to get the very best results.

[Wobbies]

Yes I did. I changed from Imraldi which worked brilliantly for the first 2 months then stopped working and have just started on Cimzia so have my fingers crossed.Was very nervous and did not allow nurse to visit to supervise first dose of Cimzia, got them to agree that I could just get on with it. However, my nephew was due to start on a biologic but they have deferred that for the time being. Mind you that is mainly because he cannot go for the necessary assessment blood tests and X rays at the moment. Good luck.

[RosieA]

Thank you for your response. Will be contacting rhuematology on Monday to discuss options more thoroughly.