Forever

[Harvey20]

Hi I have just joined this group and wonder if anyone else has waited as long as me for medication? I have been in incredible pain in my wrists thumbs ankles and back for almost a year now since my diagnosis. I am taking co-codamal but not getting much relief as yet, I have a rheumatologist appointment on Thursday the 14th June ,

[helixhelix]

That's bad. Were you diagnosed with rheumatoid arthritis by your GP and have waited a year to see a rheumatologist? Or diagnosed by a rheumatologist who failed to do any follow up? Either way it's not good! Hope the appointment next week brings more positive action!

[Harvey20 in reply to helixhelix]

Diagnosed by GP and now waiting, as you can imagine it has got worse waiting, I can't get any shoes on my feet and ankles are swollen, my wrists are on fire and I can't use my thumbs ,

[helixhelix in reply to Harvey20]

That's nuts! Your GP should at least have thought about anti-inflammatories, or even a short course of steroids, if you were having to wait that long. However, probably best now for the specialist to see you at your worst. I really do hope that you get one who takes action straight away. Write down a list of symptoms, and approximate dates that things started so you have it to hand on the day.

[Hidden]

Welcome Harvey, you will soon discovered that joining this support group was the best descion you have made. RA is so misunderstood by friends & family. You will find comfort in this support group.

I hate to say that waiting to be diagnosed & then waiting for meds seems to be the norm. It's just not right, something needs to change.

Take care

Sue

[Harvey20]

Thank you for the welcome, glad I have found you , I know my family are fed up hearing me moan , I just don't seem to have any quality of life at the moment x

[Mhairi54]

That is unbelievable! I can't believe that you've been left in agony untreated for so long. I really hope that you get some relief soon. Just be firm (but in a nice way!) and insist they start you on something straight away. You could maybe ask for a systemic steroid injection at your rheumatology appointment. That would hopefully give you some relief quite quickly.

Glad you've found this site. Know I've found it to be invaluable for support and advice. Feel free to ask anything on here - there's always someone to give good advice or just to have a good old moan/rant/cry! Let us know how you get on at your appointment. Kind regards. Mhairi

[Gnarli]

Hi Harvey 20 and welcome to the gang you never wanted to join. This forum has been a lifesaver for me giving advice,support, information and companionship from people who know what it's like. Been there, done that and got the t shirts in every colour, in fact. Feel free to moan, rant and share worries and experiences. Its not all misery and pain either. You can also find lively and funny discussions on all sorts of subjects. Wishing you all the very best for your appointment on 14th. Please let us know how you get on. Hugs

Jan

[Bookworm55]

Hi and welcome. That seems far too long to wait ! I'm pretty sure that NICE guidelines advise that first rheumatologist appointments should be asap -certainly within weeks not months- to minimise joint damage. Poor you. Hopefully you will be started straightaway on treatment- which will reduce pain and further damage.

[Paulajolo]

Where in the country are you. That's a terrible length of time to be waiting. You should have been given at least some steroids to tide you over until your appointment. Try to do some research yourself ref Meds. I found I had to ask for injection for pain relief. Depo MEdrom or Lidocaine 8mg works wonders. Ask when you get your Rhumy appoint also keep a diary of symptoms and take a list of your pain concerns and worries. Take notes if you feel you can't remember everything at your appointment. It's a lot to take in first time you go. Good luck.

[Paulajolo in reply to Paulajolo]

Sorry injections should read 8mg. NOT 8.

[Paulajolo]

What's wrong with this typo. 80 mg NOT 8mg

[Mandalou]

Hi Harvey

Your GP seems to have let you down as it is unnacceptable firstly to wait a year for a rheumatologists appointment. Equally I wonder what 'diagnosis' the GP gave you and on what basis?

When I had my sudden explosive onset of Inflammatory arthritis in multiple joints I was given oral steroids at a high dose and my immediate positive reaction to these was a marker to aid potential diagnosis. Then a rapid but safe taper while waiting for my referal to come through ( which by the way was 8 weeks) I live in Berkshire out of interest. The fact my arthritis came back with a vengeance during the taper gave the Rheumy a good platform along with blood markers to identify what lovely brand of arthritis had arrived to torment me.

The Consultant rheumatologist I saw was highly complementary of my GP and said that her actions were spot on.

My point to you Harvey is to ask why if its taken a year to get an appointment , you havnt been back to your GP? Or if you have what on earth your GP was doing about it.

I'm very sorry to say that if you do in fact have one of the myriad auto immune inflammatory conditions that you will have to start taking control and askng questions and become an expert in the tests that will be done and what they mean.

This Forum is a great start and you will get much advice from the depth of experience and knowledge on its pages but I cannot stress strongly enough that you must take action.

Assuming you are in the UK, I would be making a GP appointment for directly after your first rheumatologists appointment so you can discuss what the plan is going forward.

Take notes or even better someone else in with you.

I wish you the very best of luck and I hope soon that you will be getting treatment and are not in too much pain currently.

Very best wishes.

Mx

[Harvey20]

Hi All , can anyone tell me if they are on HUMIRA ? I am starting it in a couple of weeks and after listening to the nurse this morning I am really nervous about catching infections etc ....,