Should I contact rheumatology or not?

Chip_peeps71

Hi, I'd appreciate some advice from the community - I was diagnosed with inflammatory arthritis back in Feb. Tried hydroxychloroquine which didn't help and have been taking 20mg methotrexate (and folic acid) for the past 8 weeks. I've been doing well on this until last week when I had a flare which lasted 5 days. I'm currently experiencing increasing levels of pain - especially knees, hands, wrists and ankles, but have also started experiencing pain on my lower back (approx 4 weeks) such that I'm having difficulty getting up from a seated position, in/out of the car, real difficulty bending and my mobility has slowed down considerably. My question is - should I contact my rheumatologist/specialist nurse about the flare and also now back pain? As I'm only relatively recently diagnosed and on a steep learning curve regarding the condition I'm unsure whether I should contact rheumatology now or just wait until my next follow-up appointment (in Nov). I don't like making a fuss a wonder whether I should wait a little longer to see if things settle following the flare of last week. Any advice would be very welcome- thank you.

Tray

My ra nurse says that if a flare lasts longer than 5 days you should contact rheumatoid Helpline. Your not making a fuss your treating the illness as it should be treated, don't worry about contacting the nurses.

frogmorton

Morning @Chip_peeps71

My question would be - 'do you have pain meds and anti-inflammatories Such as maybe coco-damol/ ibuprofen at your disposal?' If not your GP can maybe prescribe you some pain meds to help you just now. Would they refer you for some physiotherapy too. They last thing you need is for it to affect your mobility.

8 weeks is still early days for MTX to be fully effective.

Tray you obviously have a great Rheumatoid helpline.

Feel free to ring yours of course if you've tried pain meds as well. I hope they are helpful. Mine aren't always I'm afraid probably understaffed it can take a few days for a reply. I am exactly like you feeling reluctant to ring anyone or be a nuisance, but it is their job so best of luck.

Do let us know how you get on. ((()))

Toni

jamieA

Hi @Chip_peeps71

I've realised since being diagnosed with psoriatic arthritis 3 years ago that I can't be a passenger in all of this. The medics don't know what you are experiencing unless you contact them when things change - so you are not making a fuss. Losing mobility is a big issue and if it can be prevented it should. The longer you condition isn't controlled the more damage you can sustain. You don't say what type your inflammatory arthritis is but certain types affect your sacroiliac joints in your lower back where your spine meets your pelvis. Seven months after I was diagnosed I was getting worse and could only walk with the aid of crutches. I had a robust conversation with my rheumatologist. I then got access to physio, podiatry, occupational therapists, pain management and my drugs were changed. I'm now able to walk my dog 50-60kms a week - I'm not cured but I'm in a much better place.

Hope things improve for you soon.

Chip_peeps71

Thank you - your comments are really helpful. I'll be contacting the rheumatology specialist nurse today.

Arthuritis

Sound advice from the group as usual.

frogmorton

How did you get on @Chip_peeps71 ?

Chip_peeps71

Hi, I saw the rheumatology nurse and had a steroid injection on Thursday and more bloods taken. They've scheduled a follow-up phonecall appointment with me in a fortnight. Also mentioned changing the delivery of Methotrexate from oral to injection as a way forward, and potentially adding sulphasalizine to the mix. I'm seeing my consultant in November so guess all this will be discussed in greater depth then.

Thank you for your advice, I feel more confident about contacting rheumatology now.