New to rheumatoid arthritis area - advice on process for first steps please.

[MColc]

I was diagnosed as having a severely underactive thyroid in Jan this year and told that I would feel wonderful after six weeks on medication. I am still on 175mcg of levothyroxine and to cut a long story short, still feel unwell. Mainly muscle, joint pain in hands, elbows, feet and knees. My doctor has given me amitriptyline and this had a limited effect. He then gave me arcoxia and this has helped for a while but is now not as good. My last blood test showed a ESR of 81 (range 0-20) and CRP of 35.2 (range 0-5) and he referred me and I went to see a rheumatology consultant last week. The consultant asked for my history and gave me a physical exam and said she was 95% sure that I had RA but would need to wait for the results of the blood tests and xrays to confirm this. She advised me on the proposed treatment medication and gave me a RA booklet. I also had a steroid injection. The injection worked really well until Monday and now I am back feeling the same aches and pains. I have just had a letter inviting me to attend a clinic on January 27th!! I have called the hospital this morning and they advised me that the consultant has asked for a three month follow up appointment. However, I have not been given any treatment. I have left a message advising them that the steroid injection is now not having an impact and that I have not been given anything. Am I right with this or am I going loopy?? - I really can't take another three months of this debilitating pain with only the now ineffective medication. What should the process be?? I have also asked for the blood test results and have been informed that they are not usually given to patients - yet I always ask and am given a print out of the results when the doctor has referred me for blood tests. Sorry for the long note but I don't know what is supposed to happen and would really appreciate any information you can give me. Thanks.

[Beverley-NRAS]

Hi MColc,

sorry to hear that you are having such a bad time at the moment. There is no set way in which rheumatology departments are run and as such, consultants approach diagnosis and treatment in different ways. Did your consultant say what proposed medication she would be starting you on? I do not know whereabouts in the country you are but unfortunately waiting times between appointments can vary.

If you are experiencing pain in the meantime, this is something that your GP may be able to help with. There are other forms of pain medication available other than the ones that you have already mentioned and also non medicinal methods. I have put some links below to some articles and publications on pain relief that may help you:

nras.org.uk/managing-the-pa...

arthritisresearchuk.org/sho...

arthritisresearchuk.org/sho...

(The ARUK publications are free to download)

If you would like to talk to someone about your situation, please feel free to call the helpline on:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

Best Wishes

Beverley ( NRAS Helpline )

[MColc in reply to Beverley-NRAS]

Thank you. The consultant's secretary has now returned my call and advised me that they are currently 2 weeks behind on letters!! She has informed me that my next appt will now be bought forward and treatment will begin and she has done the letter to me along with a prescription for prednisolone.

[Beverley-NRAS in reply to MColc]

Hi,

That's good to hear. Hope you feel better soon.

Beverley

[cathie]

You could see if your GP can contact the consultant as a matter of urgency. Its not just the pain, but the joint damage that they need to emphasise. You can read about people's early experiences with DMARDS which are referenced on the NRAS website which is really useful.

Another possibility is that the hospital has an emergency helpline for RA. The blood tests to which you refer should only take a few days at most and those inflammatory markers make it sound as though the consultant is right about RA.

Steroids are just like a sticking plaster and wont make any real difference to the disease.

Perhaps the consultant will consider putting you on a medication before seeing you in Jan - that way you could evaluate how well you are doing.

I really hope you can get some urgency into the situation. I've been hit by appointment and test delays in the last year and may be very slowly getting out of it, but it is a horrible situation to be in.

Best,

Cathie

[MColc in reply to cathie]

Thank you very much Cathie. The consultant's secretary has now informed that that a letter and follow up information is now in the post!!

[cathie in reply to MColc]

Oh good, that's something. I hope it is soon. If not you could always ask to be seen if someone cancels.

[Hidden]

Hi. I had a similar experience when my RA started three and a half years ago. I too had been diagnosed as Hypothyroid a decade or so earlier - this seems to be a common shared condition on here.

Unfortunately my RA was masked by a steroid injection the first time I saw my consultant and I then had to wait an interminable four months to be diagnosed with sero negative RA and put straight onto Methotrexate. The hold up came because he took bloods and did x-rays for me too but the results of the Anti-CCP blood test took an age to come back and he then wrote to my GP saying on the basis of a negative anti-CCP he would be reluctant to start me on Methotrexate.

So when I finally got to see him he diagnosed me by my high ESR and CRP and by my "classic RA symptoms" - which were visibly swollen knuckles and finger joints and wrists. Fortunately, despite the very long, painful wait I didn't sustain any damage to my joints.

Hopefully it will be the same with you but I would follow Beverly's advice and see your GP as soon as possible. Oral steroids might be an option that your GP suggests, the advantage being that you can come off them in time to see the consultant and they won't linger in your system as the injections sometimes do. They do need to make sure that they are treating the right inflammatory disease before deciding on treatments - although there is so much overlap in medication that it wouldn't harm to push to get started before January.

[MColc in reply to Hidden]

Thank you very much twitchytoes. The consultant's secretary has now informed that that a letter and follow up information is now in the post!!

[Hidden]

That's great - good luck with it all. No one wants to have RA of course but as I know only too well myself - being in limbo-land is worse. Twitchy x

[somaiah]

good morning to all,recently i was travelling along our son,after 20 kms,ifelt like, over sweating,feeling like vomiting ,giddines.had face wash,tender coconut water only.still return home had 'ATTEN 50-5mg,but after few hours only 50% turn normal.B.P.checked and found -167/88.advice,if any boy experienced the similer one.