un happy with treatment

[caggy]

i was diagnosed with RA Feb 2011 while working at a new job 24/7 house manager to young parents, very stressful. I had what i was told was a swan necking finger i had blood tests and was referred to a Rheumatologist my history of strange wandering pains that would take my knees or my shoulders out of action was discussed and further blood test taken. 2 weeks later i got a phone call from a nurse explaining that I was going to be put on Methotrexate and to attend a clinic; i was not happy that I had been told i was going on medication I was not keen on, so delayed the start of treatment 3 months later the nurse saw me again and this time told me that at the rates of my blood test my disease was progressive and I would be damaging myself if I didn't on it, after alot of thoughts I agreed. my RF 01/11 was 1580 in 04/11 was 1710 ESR 02/11 64 +04/11 33 + 06/11 was 31 without treatment my ANTI CCP was over 500. I had no clue what this meant saw Rhuematologist in May who gave a magic steriod injection which within 5 days left me painfree started methotrexate after this in june after 7 months I have not been painfree even though I have had strong painkillers that have raised my B/P I choose to stop Methotrexate in March as my pains were increasing and all the nurse or dr's could offer me were more painkillers, The Nurse in particular was unhelpful as she read my blood results and said these are all good you shouldn't be in pain, it's not RA not once did she say it could be anything else. My question which nobody wants to answer is can one be diagnosed as RA just on those blood tests? some have said i have fybromialgia? I feel so depressed and tired out all the time that I have had to give my job up.

[parkie]

Hi Caggy, I don't understand the blood test results, but my consultants(Ihave 2 that I have to have regular tests for) are very good and explain them to me.My first RA consultant was awful,1 minute I had AOSD,then Ididn't,then I had Sjorgens Disease, then I didn't,I gave him a second chance,he wanted for me to wait from Jan 2010 til Nov 2010 without any medication at all not even a painkiller, that did it. So i asked for a second opinion and got it, I would have been 10 months behind if I had stayed with him and am really happy with my new consultant as he it turns out he is a specialist in my form of RA,which is Adult onset Disease, very rare. Take care (Ann) Parkie x

[caggy in reply to parkie]

Hi Anne, Thank you I think I shook the Rheumy up when I told him I stopped taking MTX He said 'well that was a stupid thing to do' I said I wanted my head back and that my pains were worst, He suggested leftflomide but after the nurse found my blood pressure 210/105 they changed their minds untill its under control, I have left my job and gone back home which means i have a new gp, she already thinks I'm too much and will not see me but instead refers me to the practice nurse, i was put on bp meds, but have not had my bp checked out, I have had a very sore throat for 5 weeks and lost my voice last week, good for her! I had to cancel appt with specalist nurse because I was ill now I have to wait untill july. I am joint pain free ish at moment as the Rhuemy did give me a steriod injection and that does last for 2/3 months but its all these silly feelings, crying at the drop of a hat, numb arms and legs, a foot that doesn't move when I'm walking, pain in my ears but gp and nurse say theres nothing wrong, not really seeing well yet my eyes have been tested ok.more recently the whole of my thigh hurts from knee to backside I think it's muscles but I'm afraid to speak to the gp again.

[oldtimer]

You do really need to be able to discuss the management plan for your inflammatory arthritis. The blood results show high levels of inflammation before the methotrexate, and presumably the blood results showed this had settled while you were on it. This shows that you need a Disease Modifying Anti-arthritis drug (DMARD) to stop long term damage to your joints.

I do find that the health professionals look at the test results and they make you feel as if you are putting it on when you STILL have a lot of pain.

But all the real experts treat the whole person, not the tests. The persistence of the pain should have led to a review of your management plan, not just pain-killers.

Go on nagging them for some action and explanations of what they suggest and why. Take someone with you, write a list of questions before you go (keep a copy and give one to the doctor or nurse). Quiet persistence works best - the "Yes, but I still don't understand....." until you do.

Unfortunately, the pressure on time and appointments lead the health professionals to take as little time as they can, not as much as they should, especially when you are first diagnosed and don't know what is going on.

Most people find that it takes a lot of time, and trial and error, to find successful treatments - read the other posts on here and you will know that you are not alone in your frustration!

[helixhelix]

I agree with old timer, you need to keep pushing to get a better plan. Lots of us can tell you that the pain and thé blood tests don't always match, but anyway your results are still looking high to me. There is a big range of other drugs that can be tried, although MTX is generally one of the best it doesn't suit everybody. So you need to ask for alternatives as you do have one or other of the forms of inflammatory arthritis by the look of your tests, and the fact that you responded well to steroids. I wouldn't get too hung up on the name, as there are different forms and diagnosis isn't straightforward even with the tests. Instead concentrate on treatment. You can also ask GP to be referred elsewhere if you're not confident about the rheumy you saw. Polly

[caggy]

dear all who have replied to me thank you, this morning at 4am I started writing a letter to my Gp and Cons listing my ailments and feelings i do sound like a hypochondriac but I don't think 5 minutes gives enough time to explain myself and I come away thinking why did I bother. I really am pleased I signed into this as at last I can say how I feel and someone understands, ps glad of spell check but I have to laugh at my stupid spelling! anything to lift my spirits. thanks again

[Victoria-NRAS Partner Moderator NRAS]

Dear Caggy

This is quite a complex story to answer on here, but I wonder if you might benefit from speaking to a member of our helpline about the tests for diagnosis and the use of medication etc. We are available Mon-Fri from 9.30-4.30 if you would like to give us a call, on 0800 298 7650.

Kind regards

Victoria

(NRAS Helpline)