Hi Everyone, I am posting because I need to know if I should be getting better care from GP and Rheumy's. I had RA (I believe) four years before it was eventually diagnosed in 2008. My general condition is gradually deteriorating - though I know there are many RA sufferers much worse than myself. I have been on methotrexate injections 7.5mg for 18 months after being on tablets for 3 years plus Humira which I have been on for 18 months. I had operations on my hands last April and had to stop all my medications. Since then life has been unbearable as the meds didn't appear to have any effect once restarted. I had multiple swollen joints and no energy with depression increasing with my diminishing mobility. Since November my ESR has been 45 with no sign of it reducing though I am now on 15mg of methotrexate. Before Christmas I was in such a state unable to do even the basic task without extreme pain that I had to beg the Rheumy for help after my GP could only suggest morphine to ease the pain. I have used the morphine to help me sleep but it does not control the RA. My Rheumy nurse injected my knees with steroids early January and so far it has helped me get around easier. I have just rung for my latest batch of blood test results and my GP, who has spoken to me about my abnormal test results every month, is now just leaving a message to say my ESR is 'stable' - huh!!! I presume it is still off the scale!! I thought continued unchecked elevated levels of inflammation were dangerous and put me at risk of stroke or heart attack!! Why will no one do anything to get my ESR down to acceptable levels?? It seems to me that a lower ESR will improve my health generally - do I need to make more noise?? Pat xxxxxx

Hi Kathleen, I have not seen Rheumy consultant since 2008, I only ever get to see the Rheumy nurse. CRP is never tested for only ESR, there has never been any explanations re ESR and certainly it seems to be ignored. Its comforting to know there are others with elevated ESR. I am in a place where moving hospitals would not be an option, I am stuck with this lot!! I rang the NRAS helpline at Christmas because I was in such a state but there was no one available to talk to me about medications. Thanks Kathleen, I appreciate you taking the time to respond. Pat xxx

Hi Pat,

You need to make a big noise! It's shocking you haven't been seen since 2008. I'm never longer than 6 months between appointments.

Have you a number for how to reach your rheumy? Mine gave me her secretary's number, with instructions to phone if there was a problem, so you are being " short-changed " if you have no means of contact.

I had to go out of the area to find good treatment - funnily enough there are lots of clinic " attendees " at my hospital who travel from Cumbria.

I'm lucky in that I have a really good GP, who kept me sane in the dark days after diagnosis. Would yours be willing to ring your rheumy for you?

Take care,

Kathleen x

Hi Julie, thank you. I will have to wait for my next appointment with the Rheumy nurse before I can consider noise making, but I will certainly give it a try. Xxx

Hi Pat
Your way of "self refering" should be to get through to the consultants secretary and ask ask for help.
The sooner you do it the better chance of feeling good ONCE the better weather comes.
The guidlines state appointments should the at least annually with 6 monthly follow up by nurse if all is going smoothly.
i

Another way would be to see him privately as a one off.
What does your GP say.?
Power to your phone voice, we all become emotional when bureaucrats are involves. Crying sometimes needs displaying to get a hearing.
Keep us up to date
Love Anne

hello,

i was told not to take any notice of the numbers but more on how you feel. i know a lower CRP and ESR is beneficial .. but to be honest when mine have been higher i haven't been able to tell.

i feel at this stage of the game a change on GP maybe in order, and also if you can stretch to a one off private Consultation with a Rheumatologist this would help you, i know we shouldn't have to pay but sometime's it's a case of needs must. i have a fantastic Consultant, i know she does a private clinic ( think it's once a week )

yes i've shed many a year, but that was when i was newly diagnosed, fortunately the treatment is my area is fantastic.

hope you can bring things forward by whatever means available.

Suzanne

Hi,Pat,
How about your MP ? You can't be the only one by the sounds of it.
Sorry but someone needs a kick up the proverbial. Get back to the Docs.
Can you take someone with you?
Please keep posting even if it only lifts the lid of steam for a few minutes.
Hugs and power to your elbow
Anne

hi again Pat,

just to clarify the monthly blood tests are not just about CRP and ESR, so they are definately not a waste of time,

you will be checked for liver and kidney function, cell counts and all manner of things ( can't remember them all ) i had slightly low Potassium levels a couple of months ago .. which was nothing to do with my RA meds but was caused by one of my blood pressure tablets, Benzofluorimazide ( water tablet ) which i stopped and potassium went back to normal, i now eat a banana a couple of time's a week just to be sure.

so you must keep having bloods done,

i agree seeing a different GP is the way to go at this stage,

and like Ann said you should be seen 6 monthly, now i am very established on my meds it's going to be 6 months for Rheumy Nurse then 6 months for Consultant unless i'm in trouble then i phone straight away, the reason i was told to see Rheumy Nurse next is she can spend more time with me going through my general well being, and see if she think's any x rays, or scans, bone density scan might be a good idea i was told and she's in charge of all this.

i know from being on this forum a long time now that so many aren't seen even yearly, so i think it is time to start making a fuss.

Suzanne x

Power to the dummy. Keep spitting it out in their faces.
Love Anne

Dummy spitting is good. More effective in my experience is to have a melt down in the GP's office. I can recall 3 or 4 occasions in the last 30 years or so that I have suffered from acute phases of chronic illnesses such as Ulcerative Colitis and RA when I have felt rock bottom and unable to cope and have had meltdowns.