Had my 4 steroid jabs and just left to get on with my DMARD's

[Rockpool60]

Just wondering if anyone of you have been left to get on with things apart from monthly blood tests?

[Dotty7]

Yes, pretty much. It was only after about three appointments that my then rheumatologist said, "Well you know where to find us if you need us," and I said "Er, no, actually." Turns out there was a specialist nurse helpline and everything. It's worth enquiring about, or checking your hospital's Rheumatology Department website.

[Rockpool60]

I have a phone-line to the Rheumy nurse but only for emergencies or if I am ill and have to take antibiotics etc. I did phone once and nobody got back to me and the nurse I was allocated was furious she was not told about my call :/. Hope you are okay ?

[Tillytop]

Hello Rockpool

I too have always been pretty much left to get on with things and I know that it can be pretty isolating. Like Dotty, it was ages before I knew there was nurse helpline and, having had RA for nearly 17 years (and been with the same hospital for 10 of those) I only found out, by accident, last year that there were specialist physio/OT/hydrotherapy services available. I think Dotty's suggestion of making enquiries and/or checking on the website is a good one, so that you know what help and support is there for you if/when you need it.

Tillyx

[Tillytop in reply to Tillytop]

Hello just seen your reply to Dotty above. Sad though it is, I have always found that I have had to push hard (sometimes even "beg") for the help I need and to chase the helpline if I don't get a reply. The last time I phone the nurse helpline at my hospital and finally got to talk to someone, the nurse apologised because she had been on holiday and apparently nobody had been monitoring the helpine in her absence. Sorry, I know that sounds negative but that has been my experience for a long time now. Maybe (hopefully) we are just unlucky and that others have more support available to them (or are at least told about the support that IS available!). I think that is why I find sites such as this one such a great source of help, support and advice.

Tillyx

[helixhelix]

generally, yes.... My next appointment is over 6 months away, so basically until then if there's a problem I just have to try to contact the nurse. And my blood tests are now every 6-8 weeks. Tho' having said that I'm being moved to injectable MTX so do get a couple of training sessions. But if you feel concerned about anything then do call and push for an appointment. Sometimes you can get a cancellation appointment at fairly short notice. Polly

[Rockpool60 in reply to helixhelix]

Hi Polly thank you for that. I am still on MTX 15mg and Hydroxychloriquine and just ticking over. Don't know when I get my next appointment at Rheumy clinic sometime in December maybe. Take care x

[Rockpool60]

Hi Tilly. Thank you..I have been to podiatrist and OT and going to see physio soon. Been told to go swimming when I feel up to it too. I was only diagnosed in May so very much a newbie. I am a puppy walker for guide dogs...and having a 6 month break to see how I feel. I do lots of fundraising for them too. I pace my self so I don't get too tired. take care x

[Tillytop]

Hello again Rockpool

I am so pleased that you are getting podiatry/physio/OT help because that can be so important. I have actually found the physio to be a good point of contact and it was her that organised referrals for me (via the rheumatologist) to other appointments so you might find that too. The physioat my hospital is also much more responsive than the nurse helplineand she always gets beck to me really quickly so it's not all negative my end, despite what I said above!

I really admire you for your work with the guide dogs and really hope you can get back to puppy-walking before too long. Our neighbour breeds and trains guide dog puppies and I love to see him walking past with them.

Tillyx

[Rockpool60 in reply to Tillytop]

Hi Tilly. Thank you ..I love my work with Guide Dogs and we like to raise awareness about how they are not funded by the government at all..all by donations. Do you live down south? Not sure what we are going to get in January..not bothered really we have walked 3 puppies so far which is so enjoyable but hard work to say good-bye to them. It is nice to see them working as Guide Dogs once they qualify too.

Take care x

[Hidden]

One of my 2 deaf sisters has decided to get a guide dog when she retires. She teaches but her boss told her she can't bring a guide dog to work which I think is a bit off but there we go. Yes it's a great job you do.

I would be completely abandoned if I didn't insist on seeing GP regularly. I was diagnosed last November and have seen my rheumy once since. I have no rheumy nurse - but I do have a physio who will see me and an OT if I need them - but again only through pushing my GP. I think this is just the norm for people with chronic conditions. Tilda x

[Rockpool60 in reply to Hidden]

Hi Tilda. Some workplaces are very blinkered towards Guide Dogs and other assistance dogs..it is such a shame. One of my friends has a guide dog that is also a hearing dog too..with the chequered red harness. The dog knows sign language as well as guiding her. I walked with a partially sighted girl back to the railway station and the amount of ignorant people who expected her to move was disgusting. So very sad. How is the art work coming along xxx

[Hidden]

Artwork's going great thanks! On the professional side we are about to install an artwork in central London tomorrow and have just been selected for a hospital public art commission - creatively it's okay all though haven't done much recently. I'll be staying with both my deaf sisters in a few weeks time - deaf interpreters all booked for artwork launch - so excited! Please don't fret about being abandoned - you're never abandoned by us on here anyway and if things are bad then you can contact the rheumy nurse more assertively!

Tilda xx

[Paula-C]

When I first was diagnosed the consultant made me an appointment to see him 12 weeks later. During them 12 weeks I was having regular blood test done (was on SLZ), saw the specialist nurse, saw the physio and OT and I felt really looked after.

At the end of my twelve week appointment the consultant said 'Make an appointment to see me in three months time', and out the door I went. I always remember feeling if I had been cast into the wilderness to get on with it (a bit dramatic I know, but that's what I thought at the time).

But I wasn't really, I have a good specialist nurse team who always get back to me within 24 hours if I leave a message and if I have needed to see them they have made my and appointment within a week or so. I have found out now that if I ring around 2pm there is normally a nurse to answer the phone.

I don't see my GP about my RA, probably because I don't have to, but I don't think they don't know much about it anyway, See if you have a helpline, if not, if you have any problems I would ring your consultants secretary.

Paula

[Hidden]

I have direct email line to my specialist nurse along with telephone nos. I prefer to email as she looks after two hospitals, replies come either the same day or within two days or calls me, dependant on the query. I always make sure that I leave the hospital having made the follow up appointment even though they are now down to every six months. I do know that if the matter was urgent and I telephoned I would get an appointment the following week even if it meant going to the other hospital, again I have had experience of this.

Re-reading I think I fall into the lucky bracket.

[minka]

yep

had 2 appointments with rumi and left to get on with it

same with doc

im on me own if it dosnt mend im cream crakered

had to pay private to get a proper looking at to tel me what it was

going docs tomorrow to see what hes going to do probably nothing

ALLS WELL THAT END WELL GROMIT

[Josie2]

Yes me too!

After diagnosis i was put on mtx n told go go back for bloods, came off mtx as i wasnt doing well but just feel like i have to plod on alone.

I rang rheumy nurse last friday and left a message.........am still awaiting a phone call!

[Rockpool60 in reply to Josie2]

Hi Josie..I hope the nurse rings soon. I ask for a print out of my bloods once a month for my records..you think I was asking for an impossible thing..or why did I want a copy :/ so last time I said actually I like to keep a check on what is going on with MY body. I think you all forget ...that I am the one with the illness and I am the one taking these drugs. that put their gas at a peep