Tamsin

Firstly, there is never a silly question when you are talking about RA. You are now on a big learning curve. This is what this brilliant forum is for.

It is early days with your medication. You are just starting off on what may be a long road. Unfortunately the biggest problem is finding the medication which will suit you. Different medications suit different people and your Rheumy team will be trying all sorts of options.

First question - have you had a depo (steroid) injection? This is a short term solution which can work wonders to get you over the pain you are obviously experiencing. Speak to your rheumy team about having one.

Second question - what are you taking for pain relief? It is important that you get a good, regular pain killer inside you. Even taking 8 paracetemol a day, two at a time spaced out over 24 hours can work wonders. Whatever pain killer you take it needs to build up in your system and keep taking it even though you are not in pain because if you miss a dose or deliberately do not take it, then the level starts to drop and then your pain comes back.

Third question - When is your next Rhuemy appointment? If its not soon, see if you can see someone earlier.

Fourth question - Do you have access to a rheumy nurse helpline? If so, ring and make sure you see speak to someone.

Fifth question - If all else fails, did you know NRAS have a helpline where you can talk one to one with someone who can give you brilliant advice.

Finally, you should not be in a lot of pain. You just need to get it under control. Above all, do not suffer and unfortunately you will have to take your care plan into your own hands and make sure you keep on at your rheumy team to help you get a comfortable level of existence.

I was diagnosed two and half years ago and it has been a long road but there is light at the end of the tunnel. When they first diagnosed you, they did not tell you that eventually you will know more than the doctors

Hope you are able to get some help and start feeling a little better soon.

Jackie
xx

hi tamsin,most of it has been said really but i like you felt worse rather than better and had no idea what to feel if anything about a flare up,trust me you will know when it hits,im still getting to grips about the feelings and i am 5/6 yr into ra,it does take time for the meds to be adjusted to your needs,i have had depo steriods only if i have to" my choice "they are very good,i tend to save it for traveling and hols,i am now on mtx 25mg inj and hydroxy,co-cod etc,sulph didnt agree with me,the biggest thing i found hard was the pacing my self thing as i am a rush around person,i do now pace each days chores,you will find what your niche is in time but do take things easy for now,keep a journal of how you feel;ie sore, tired bit more energy etc that way you will know if you have done too much and or when a flare happens,only you can read the bodies signs,take care,be patient,we are all headless chickens at first,dorothy

Hi tamsin

Sorry you're feeling rOugh

I used to have a booklet with a pie chart. It summarised ra a bit like this from memory
It showed about 10-20% have mild disease 50-70% have moderate disease and 3-5% have severe disease and 3-5% have disease that just goes away
It explained mild disease as a few general aches and pains and occasionally feeling unwell
Moderate disease as generally bumbling along but the ra is always there somewhere and periods of being unwell
Severe disease when you are generally unwell and hurt lots

There are dozens of drugs and combinations
SLZ is a good drug across the board and the hydrocycloroquine is a milder one they tend to use in mild- moderate disease more
But it doesn't work for all
They may well add in methotrexate next
If they do

Don't be scared off by the leaflets! They will keep a v close Wye on things- know the drug well and it's the gold standard ra drug nowadays

The SLZ made me a bit blue in mood so if you think that's happening to you you'll need to get a helping hand from the GP

Hope this is a help

All the best

Jenni xx