Leaving messages on nurse helpline.

[Luludean]

I wrote to the rheumatology nurse helpline on Feb 1st. I have had no reply. It was about the unpleasantness of the consultant and my reluctance to start Methotrexate . I was very humble and polite.

[Happyrosie]

I take it you are asking what to do next? If this was at a NHS hospital they should have a Patient Advisory Liaison Service (PALS for short). Contact them.

[Luludean in reply to Happyrosie]

hi Rosie , I did that and, got no reply .

[Happyrosie in reply to Luludean]

what!!!! They are there to deal with this kind of thing!!! The two times I’ve had to contact them, I got an instant acknowledgment, then a holding letter, then a proper researched reply within four weeks.

I think a little nudge might be indicated.

[Luludean]

I am in despair. Worn out by all the battles. So much so that I had an » episode » on Sunday and am now under the TIA clinic as well. Can’t drive till mri 22 nd of feb. It is disspiriting at the moment.

[Batty1]

What was unpleasant about him/her?

[Luludean in reply to Batty1]

I write a post about him a few weeks ago . Cold, arrogant, inhuman, dismissed my valid questions and refused my request for a multy disciplinary consultation . I kept completely calm but came home and wept.

[Batty1]

Sorry to hear your doctor is being unhelpful.

I read your bio and see you also have psoriatic arthritis, so do I. Im on Cosentyx and Otezla as my treatment.

[Luludean in reply to Batty1]

hi Batty 1. I was told I have ankylosis spondilitis , psoriatic arthritis , before that I was told I had Polymyalgia, even Sjorgens was mentionned. When I asked exactly what did I have I was told «  this is a blanket term ».

Tried Benapali then Erecept but got unwell each time . Was offered Sulphasalizine ( but it clashed with heart drugs) . Had « difficult«  face to face once in several years ,lost confidence and now resisting taking Methotrexate.

[Batty1 in reply to Luludean]

Sorry but psoriatic arthritis isn’t a blanket disease … if I were told what you were told I would fire the rheumatologist and find another… Sulphasalazine is such and old drug and I couldn’t use it either that was 30 years ago.

[Luludean in reply to Batty1]

Hi Batty, thank you for replies, any thing I quote is from the nurse andxering ( eventually) the helpline . Not the consultant , I am below his interest radar . It was when, in confusion after all the non conclusive diagnoses I had been given , I asked what the hell have I got? I was told well a blanket term covers them .

I am not suffering anything like so many of the people on this forum . It is the same with heart site( which I’m on , mitral valve repair) … so many well informed much more ill than I .

[Batty1 in reply to Luludean]

Just his response to you when you asked whats wrong with me and his response is “well a blanket term covers them”. Absolutely NO find another doctor stop sticking with the person who doesn’t even care enough to give your problem a name …. Each of those conditions he told you that you have are not blanket conditions they each have their own cause and in some cases treatment … the only 2 that are together in terms of the way they attack is ankylosis spondylitis and psoriatic arthritis but still they are medically different …. Do yourself a favor and find another Rheumatologist.

I don’t care how much more ill someone else is to me doesn’t make me less important… so stop thinking like that.

[Luludean in reply to Batty1]

you have NO idea what the medical situation is here . But thank you.

[Batty1 in reply to Luludean]

Its the same everywhere anymore I use to see my GP within a week Im now a month wait for appointment…reality is you cant move forward if you can’t even get a real name to your problem…I had to fire 3 Rheumatologist before the fourth one actually believed I was sick and finally put a name to it “psoriatic arthritis “ does it change my outcome no but it’s mentally easier to cope with and I no longer feel nuts…. Im not trying to be rude but your Rheumatologist is dangerous.

[Elo1]

methotrexate I’m afraid you have to take the pros & cons yes it works but then you have the side effects some people tolerate it some don’t only you can make that decision based on my experience it’s not brilliant but it helps considerably I take the injection not the tablets as couldn’t get on with them