No biologics......

[Ms-D]

Ive just found out that no treatment will start for at least 12 weeks. Im not on dmards so was hoping biologics will help. Im in a lot of pain. Hope everyone is safe and well during this incredibly unsettling time. Thinking of you all xx

[AgedCrone]

Do you mean you won’t get any treatment at all...or that you won’t get biologics until you have tried Dmards?

If the latter that is normally the case.

On some Biologics you have to have tried at least two Dmards, including methotrexate before your rheumatologist can apply for funding for a biologic drugs.

Ask your rheumy nurse for some help with pain medication at least if you can’t get started Dmards.

[Ms-D in reply to AgedCrone]

Sorry. I have tried the dmards and with terrible side effects and hence next step biologics. But now with the pandemic no biologics arw given which i understand but in the mean time im having terrible flare up with only co codamol which is making me very drowsy. Well least im 🙂

[Mmrr in reply to Ms-D]

I did wonder if starting new treatment with biologics / small molecule meds would be put on hold.

[Ms-D in reply to Mmrr]

Everythings om hold for at least three months.

[Mmrr in reply to Ms-D]

I have a phone appointment on Friday, I'm struggling had hoped to get my baricitinib changed to something else. Ho.humm

[AgedCrone in reply to Ms-D]

Has your rheumy nurse/rheumatologist prescribed the cocodamol or your GP?

If the latter do try to contact your Rheumy nurse as GPs are not the best at prescribing RA ... pain relief.

I’m sorry I don’t have any more suggestions....but if you have a walk in centre or a Minor Injuries Unit near you...they may be able to help...with something like pain patches.

Wish you pain free soon

[Ms-D in reply to AgedCrone]

Hi the consultant suggested the co codamol and gp prescribed them. But two months taking them and they are not as effective. Had steroid injection month ago but now wearing off.

Thank you for eveything x

[AgedCrone in reply to Ms-D]

Please don’t give up ....get in touch with your rheumy nurse and tell her how bad you are feeling there must be other painkillers you could have.

You’re not being a nuisance ...we have all had to ask for different painkillers at some time or another.

[Ms-D in reply to AgedCrone]

Hi. I finally got morphine patches today so hope they kick in. How are you? Hope you are well

[AgedCrone in reply to Ms-D]

Well done ....I’m glad you got some help.

RA lesson No 1...there is always an answer...you just have to dig deep....especially just now.

Hope the patches do the trick.

Remember to keep well hydrated

.

I’m good thank you.

[Ms-D in reply to AgedCrone]

Morning well i lasted an hour before i became terribly dizzy and sick so took it off. Back to plan b and call clinic nurse to see if i can get a steroid injection. Oh well x

[Lolabridge]

I don’t think they’re keen to start any new Biologics treatments at the moment. Hoping you will get something meanwhile to help you.

[Ms-D in reply to Lolabridge]

Thank you.x

[nomoreheels]

That's potentially going to be a tough 12 weeks Ms-D, for others finding themselves in the same position too. I wonder, have you been offered a daily NSAID, more regular co-codamol (2 x 500/30mg every 4 or 6 hours) or alternative/additional pain relief? Regularly timed dosing is often more helpful than taking pain relief once a day, whichever time it is. I'm prescribed a few different pain meds, each work on different issues, including neurological & muscular pain. Or, have oral steroids been considered, short term, just until you're able to start a regular specialist med regime, be it anti-TNF, biologic or JAK Inhibitor. I mention this because often with RD it's not just a case of being prescribed cDMARDs or bDMARDs, you can need more bullets in your gun. If you're not taking an NSAID consider a topical one such as Voltarol (diclofenac), available in two strengths.

Don't forget that heat or cold can be helpful as pain relief on specific joints. A cold compress or an unopened bag of frozen peas helps inflammation & warmth pain. I have a miscellany of electric pads, neck & back heating & neck & shoulder heating pad, neck & shoulder foot warmer & such. Also the bean bag types that are microwaveable, great for the neck & knees. Gentle exercise can help too, don't push joints so much they hurt more though, they need to be helpful not aggravating! Even if it's just gentle walking, moving the joints can help ease pain as long as you don't push yourself too far it hurts more... no hiking!

Just some ideas to consider whilst you have the oh so long wait to start specialist meds. I hope it helps & you're keeping otherwise well in these strange times.