Struggling after long period of remission : If I were... - NRAS


34,675 members43,101 posts

Struggling after long period of remission

16 Replies

If I were needing treatment again for sero negative arthritis would they put me back on DMARD’s after 4 years without them? Previously took Sulphasalazine, Methotrexate, Hydroxychloroquine altogether then had bony erosions in wrist which was fused. Came off those and tried Leflunomide which I had a reaction to, then finally took Ciclosporin which I came off due to the side effects. After being offered archaeic gold injections which I refused they said they thought I was in remission so wasn’t put on anything else. I suffer pain daily and have done in all that time but I’m 9 weeks in to the most incredible joint pains, really struggling and pain relief is not touching it. Still awaiting a Rheumatology appointment and GP has just reluctantly increased my Gabapentin whilst waiting to see the Rheumy. Currently also taking Nabumetone (NSAID’s) and co-codamol too but still suffering badly.

16 Replies
KittyJ profile image

That’s a question only your rheumy can answer, have you rung your rheumy nurses to discuss it with them, maybe they can offer short term help.

in reply to KittyJ

I’m going to ring them tomorrow whilst I’m waiting to be seen. My Rheumy only does one follow up clinic per week so I’ve not got a date to see her yet. When I last rang the helpline they spoke to her and she frustratingly said my first port of call should be my GP!! I saw her on 1st July and didn’t have these problems so she wasn’t interested. So I’m stuck in limbo x

AgedCrone profile image
AgedCrone in reply to

You probably need to see your GP to get up to date blood tests done so that you are actually ready to be investigated by the rheumatologist when you get to the appointment.

No point going to see her if she hasn’t got your blood tests is there?

in reply to AgedCrone

I’ve had ESR and CRP as always with me they come back within normal range. They were also normal in July when I saw the Rheumy then x

AgedCrone profile image
AgedCrone in reply to

Belt & costs you nothing & you don’t want to get there and find you need them. If you see your GP you can get the blood form then& check with the Rheumy nurse to make sure. As appointments are so scarce you need to be prepared....not turned away for another wait.

oldtimer profile image

I would contact both sources of help and politely nag until something is done. The situation you are in is totally unacceptable. I find it incredible that we, the patients, are being expected just to be stoical and put up with things that can be treated!

The very least that they can do is offer a course of steroids while they sort out longer-term treatment. You have a flare of Rheumatoid Arthritis which needs treating! This is not uncommon after a period of remission.

in reply to oldtimer

Thank you. I will definitely ring the helpline tomorrow. I can’t keep on going like this x

I'm in remission & I was given a leaflet by the Rheumy nurse entitled 'Patient Initiated Follow Up' (PIFU) explaining what to do if had flare as they essentially discharge you to annual appts.

Agree with the other posts that you should contact them asap. You might at least be able to get steroids whilst awaiting an appt as nurse/HCA can do these.

in reply to

Thank you. Will do x

in reply to

Our hosp is great & they can often squeeze you in at lunchtime/end of day for that as takes 2 mins 😉

Well the helpline was a complete waste of time, nothing will be done until I’m seen in person and assessed. I was told I have an appointment on 3rd November with Rheumy but not had an notification of this myself. So 3 more weeks of pain and tears and suicidal thoughts. I give up, GP says need time for the increased dose of Gabapentin to work. So I’m not contacting them again x

Oshgosh profile image
Oshgosh in reply to

Please don’t give up x

*UPDATE* Had a phone call yesterday afternoon saying the Rheumy wanted to see me today at 12pm. I know she does admin on Wednesdays so that was a shock. No need to wait those 3 long weeks to be seen. Amazing news!!!

After dreading going today and thinking/worrying I’d be getting no help I was do wrong. Had a really good and thorough appointment, was given a steroid depo injection and was prescribed methotrexate injections again as in her words my arthritis ‘has come back with a vengeance after a long period of remission’. I’m so relieved to finally get some help at last.

I had bloods, hand, feet and chest X-rays done today too and have an appointment for 2 weeks to see the nurse re injections (delayed by a week due to eye surgery). Thanks to everyone for their advice and support, feel like a huge weight has been lifted and I can finally see the light at the end of a very dark and long tunnel x

in reply to

👍👍you have a fab Rheumy there. Prompt help and treatment. Sorry RA had to revisit

Mmrr profile image
Mmrr in reply to

Good news indeed, I hope you are feeling relief soon.

Thank you x

You may also like...