Recently Diagnosed

Hello all,

Finally got my blood test results a few days ago 14/3/17 , high rheumatoid factor to go along with pain in my fingers and balls of my feet.

Doctor prescribed Naproxen & Lansoprazale which are keeping me active.

I know a bit about this disease, as my 82 year old mother has been suffering for the last 12 years, so was a little distraught at the time to say the least.

The thing is that my doctor wasn't going to refer me to a specialist until I asked him to. Don't think he's up with the times, he's quite old and looks ready for retirement.

Is it going to speed things up a bit by getting a private consultation, and then getting treatment on NHS.

As after doing a bit of research, my best bet seems to be getting methotrexate as soon a possible(within 3 months according to N.I.C.E), but my doctor said it would be 6 to 8 weeks before I hear from the specialist on the NHS. and its already been 4 weeks since my first symptoms.

Any helps/comments greatly appreciated

47 years old with previous good health!

Phil

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18 Replies

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  • It's a bit of a grey area as to what "within 3 months of first symptoms" actually means - first little niggles, first full on inflamed joint with associated synovial fluid sloshing about, etc etc. I certainly was not diagnosed and treated within 3 months as was more like a year, but was successful in achieving remission.

    So if you are stuck with the NHS waiting times try not to fret too much as the anti-inflammatoires will be providing some control. You could always push your GP for steroids which are more effective.

    However, if a private consultation is an option for you then go for it! Try to find a consultant who does NHS as well so you can transfer over seamlessly. However as well as consultant's fee (£150 - £250 approx) you may also have to factor in cost of additional tests. And stop all treatment several days before so the consultant can feel your joints t their worst.

  • Thanks for the info Helix, especially the "stop all treatment for several days" . Sound like fun, lol.

  • While waiting for your appointment to come through, I'd recommend looking to join a forum on natural approaches to RA. You may find some relief from symptoms by making dietary changes and taking supplements. I know I did.

  • Thank you Em13, I may well do that, any that you can give me a link to , Thanks.

  • I forgot to mention, I sent you a private message. Hope you found it!

  • Hi welcome. That's how I did it I went privately and then transfers to the nhs. I see the same consultant for private or NHS. Good luck

  • Thanks Lomo.

  • Hi Philfen and welcome. I was in a similar position last year and the referral letter had not even been sent a month after the GP appt telling of high RD levels. A horrible flare and emergency GP appointment seems to have hurried things along. I reckon the emergency GP (Lord but I love that man) had a word in all the right ears and I got a Rheumy appointment the next week. I hope things work out for you too. Try not to fret too much about the three month thing but a little gentle nagging might help. A shy bairn gets nowt

    Jan

  • Thanks Buttonhater, my RD levels where at 50 , but the pain killers are working wonders.

    How far North are you, and why do you hate buttons!?

  • My RD levels were/are nowhere near as high as yours, thank goodness. I'm in god's own county but my daughter lives near Gateshead and married to a Cumbrian. A wondrous supplier of pithy phrases.

    It's somewhat ironic that I hate buttons these days. The fiddly tricksy little blighters constantly defy my efforts to do them up (or undo as the case may be). As a mad keen knitter I loved putting the appropriate fastening on grandkids cards. Ho hum

  • Dear Phil,

    Hopefully you will get your appointment through soon but in the meantime, if you have any questions about going private, do give the NRAS Helpline a call as they have a lot of experience with speaking to people in similar situations to yourself. (0800 298 7650 - 9.30am to 4.30pm Mon-Fri)

    Hopefully you may already have seen it but there is lots of information on the NRAS website about what to expect from GP appointments and afterwards including managing pain, emotional support, what additional tests you might have etc which can help you prepare for your first consultant appointment (whether private or NHS).

    nras.org.uk/2-first-visit-t...

    and

    nras.org.uk/3-specialist-re...

    Best wishes

    Emma-NRAS

  • Thanks you Emma

  • I did this and saw consultant same week as diagnosis I believe the early treatment really is worth paying for (insurance) and transeffered to local NHS without any problem some years later. I see the same chap whose great. I have also paid to see him privately on several occasions rather than wait for 6 months. I don't see any problems with that as I paid full stamp so in effect have paid twice however in my view it was worth it. I had good health and actually still do and when private you do get time to ask more questions. I'm not saying that is right but for me I think it helped to put me into remission very quickly.

  • Thanks Medway-lady, think I'm going to go private for the initial consultation, and just bite the bullet, no insurance.

  • Here in the South East its about £190 an initial consultation about half and hour, blood tests on top and steroid injection is £65. Worth every penny its a choice pain and money in the bank or less money in the bank but quicker treatment. Go for it and hope it is helpful.x

  • Thanks to everyone who posted stuff, really does help.

    Managed to see my local Doctor again this morning, first bit of good news is the first doctor I saw was a locum (only just changed surgeries). Todays doctor couldn't of been more helpful in explaining things.

    Amazing how much difference one doctor can make!

    More than happy for me to go private for the initial consult. Even gave me the name of consultant who would be able to take me on after on the NHS.

    Apparently, Its down to me to find the private doctor I want to use, then ask the surgery for a letter of introduction which will take 24hrs, then I go from there.

    My RF was at 50 , I'm on Naproxen 2 tablets a day, and feel quite normal on them.

    But couldn't cope without them, I do manual work, and don't get sick pay.

    So figure £150/200 is a price I'm willing to pay.

    Also my doctor said it wasn't 100% that I have Rheumatoid Arthritis, would have to hear it from the consultant to be sure, but with a RF of 50 and joint pain in my hands and feet without meds, I'm not holding my breath on that one!

    What is an average high RF anyway, maybe we could have a monthly league table, see who the winner is each month.

    My online golf society does a similar thing, the winner getting a club logo golf towel.

    Any suggestions for the monthly prize?

    Philfen

  • Well bottles of bubbly are out, since most of us drink very little if at all. Same for expensive nights out at a swanky dinner dance. Big boxes of chocolates don't do it either since doesn't fit well with our careful eating habits. Nor fancy hampers of luxury bath products, as getting in and out of a bath is not an every day activity.

    So I reckon the best prize for me that would really be appreciated would be a couple of hours of a cleaner....

  • UPDATE TIME !

    Well, I had my private consolation on Friday 24th(£180 half hour), called them Thursday23rd after I got my referral letter from Surgery, money talks!

    I need a further blood test to be diagnosed properly, Anti CCP. Hopefully I can ask my GP to get that done.

    At the moment my FR factor is 55 but with little joint swelling (Synovitis), the consultant cannot diagnose RA at the moment, I need Naproxen pain killers every day, but am leading a normal life a present, apart from the anxiety of what may happen.

    It may just clear up on its own(now there's a nice thought!) But Ive got 3 things going against me: My mum has RF, my FR factor is high, I have joint pain.

    So~ I'm to keep my NHS appointment at the end of May and see what the blood tests results say, but the consultant did say that if I was positive for Anti CCP, then I will more than likely develop RA at some point in the near future.

    So just have to carry on and hope for the best.

    I also asked about alternative drugs/therapies the only thing he could say that had any real positive data was Omega 3 fish oil tablets, so one them a day and lots of finger crossing.

    Also no real problems being on Naproxen for a few months, would need to be monitored if on them for a year or longer. I did ask if they where keeping any joint damage form happening , due to their anti-inflammatory property's, but the answer was NO.

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