Hi everyone, saw the consultant today. Went through the history of symptoms, and gave him the copy of the letter to my GP from the last appt at clinic. He said he doesnt understand why I was only give mtx. He would have advised a more aggressive treatment, which he would recommend mtx hydroxy and sulfa, with prednisolone at 30mg start for a month, reducing down to around 5 mg. If this regime was started at the beginnig then after around 3 months if it wasnt working you can sort out going on anti-tnf, whereas this way it will take around a year to have tried 3 DMARDs.
He says that as I have a physical job this should have been sorted by now, and theres no reason with the right meds that I shouldnt continue to work.
He examined all the joints, and said he could see they were swollen and stiff, and that the RA is currently active.
He also did the test for sjogren's with the paper in the eyes, mine was wet within 2 mins, so although they are dry, not enough for sjogren's.
He said the only sure way to tell if there is an overlap is to do a test called anti CCP antibody, as the others can give a false result.
He also asked me about back pain, and I said that I tend to get pain when walking with the buggy, and by the end of the day it is very painful, and I am in bed by 8.30pm.
He feels that the RA is probably in my spine too.
He also thinks that with uncontolled RA the joints willl degenerate, and then OA sets in, and its difficult to tell which is which, and with the OA the more exercise taken the worse it gets pain wise, and that RA as we know, needs the movement to keep active. At the moment he feels it is the RA, and until it is controlled I will continue to be in pain.
He was happy to prescribe himself, but as I am self funding, (no private insurance) he will write to my GP and to me, to outline these recommendations, and then they can prescribe. I can call him any time to discuss any problems etc.
On the whole an excellent appt, yes, it was very expensive, but well worth it to be listened to, and to know that I was on the right track, and that it is the fact that the mtx doesnt work for me, and probably wont now, even if they put it up to 20mg.
While I was in the appt my mobile rang, so after I checked it and there was a msg from the nurses at the clinic, saying that Lorna had been waiting for a reply from the consultant, thats why it took so long to contact me, and that I was being given an "overbook" appt as soon as possible, and the letter will be in the post!!! Lovely!!! but its taken 2 weeks to get a reply!!! I was just about to get onto PALS to ask for a complaint form. I just hope they will take on board what I've been told by Dr. Kaur, and that they will prescribe the meds.
Thanks for reading this long msg everyone x

Hi Barbie,

I am so pleased for you. It sounds as if you have been given a very open and honest recommendation re meds and likewise about what should and could have been done from the outset. You at least know and, armed with this knowledge, can approach your so called support team in a firm and confident way. If this should have happened, and from what we read about agressive therapy from diagnosis it certainly should, I believe that you could ask why it did not. Despite all your requests for help and treatment which works, you have had no real response. It is shocking that you had to pay for this help yourself so get your money's worth by ensuring that your rheumie listens to you at the next appointment and follows the recommendations given. If he does not agree, ask him to put in writing his reasons for not doing.

As for your rheumie nurse, she should and could have telephoned you back. (I am still waiting from 2cnd January, with no response to date, and sorted out an appointment my self in the meantime.) Perhaps we need to do some kind of NRAS assessment on the service that we receive from them? Seems to me that many of them have training needs before they are able to offer a service. Communication would be good for a start.

I hope that you feel a bit more supported now. Thank heavens that you were able to invest in this affirmation of your own assessment of your needs.

Eleanor x

Sounds good Barbara

christine

Great news,I'm so pleased that you have got somewhere at long last. x

Glad it went well Barbie and you know now how you SHOULD be treated.
Hope you can get on the new meds soon.

Doreen xx

Hi Barbara so glad that your appointment went well, i too went private when i first got ill my grandmother paid for the appointment as we did not know what was wrong with me , as soon as the consultant seen me he told my mum he thought it was RA and he had me in his Nhs clinic 2 days later , can you ask if this is possible for you too as it is expensive going private

Sophie x

Hi Barbs HORRAY and no less than u should have been treated like in first palce,so relieved for you hun.
i would still contact pals as a lesson needs to be learnt from this bad care.

The nruse should have liased with your gp in meantime while awaiting news from rheumy,and with you.

do call the private rheumy and ask re nhs list,i would and did previously had nothing but excellent care from Mr Hazelman.
all very best on your comibnation treatment do consider having some holiday once got new meds to give them time to kick in.
sorry late reply.
i been awaiting your news all day so relieved for u pray this gives u much more control over the RA.
lv melly

Yes me to to only 1st time private then on nhs same rheumy for many years.
and none of this leaving u with junior doc for most consultation either always with rheumy himself,with a student yes allowed ask questions yes.

bles him gone into retirement few years abck now.
all best barbs hope huby ok to.
lv melly

I was very nearly born at the Royal Free! I was actually born in Hampstead but didn't live there worse luck!

Perhaps you should try the NHS clinic if you liked him very much, but is it far from where you live?

So pleased for you...I am sure the GP will do as required now and all will be well.

Love,

Amanda

Hi Barb

You must be very relieved to have found someone who listens and cares about you! It's just really awful that you've been suffering all this time when more could have been done for you.

I hope if you need to that you can see the consultant in his NHS clinic. I too went privately to see the consultant the first time, then transferred to his NHS clinic.

Lyn