Specialist Nurse

[regina79]

Hi guys,

did you have a good weekend all?

I have been referred by the NHS Rheum. to a Specialist Nurse. However I haven't received a call/letter about this yet. How long does it normally take to speak to one? I want to ask something about the folic acid but I have no idea who I should contact.. x

[Deniseelk]

My specialist nurse works in the same department as my Rheumatologist. You could try to contact the Rheumatologist’s secretary ( I find she responds immediately by e-mail) and ask for the specialist nurse’s phone number ( it is usually an answer phone system and they return my calls within 2 days).

Alternatively, whilst you are awaiting your letter regarding your specialist nurse why not contact the person / team who prescribed the Folic Acid?

[regina79 in reply to Deniseelk]

I wasn’t given any contact for a nurse or the specialist I’ve seen.. maybe I can call the hospital but I’m not sure they’ll give me their contact. We’ll see xx

[Deniseelk in reply to regina79]

Maybe look on the hospital website as sometimes that lists the staff / contact details. Could your GP answer your query for you?

[regina79 in reply to Deniseelk]

Will do, thanks! I doubt it... they are not specialists.

[nomoreheels]

The specialist nurses I see are all at my local (small) hospital. I used to be sent an appointment 3 months after my usual 6 monthly Rheumy appointment. Recently though, about a year since, I no longer receive an appointment letter, I assume they'll expect me to contact them if I have a problem, not that I choose to unless it's really necessary. Were you given a helpline number? If so I'd call that & ask.

Is the folic acid query something we could help with? Experience only of course.

[regina79 in reply to nomoreheels]

Nope.. no helpline number

Just an appointment in November.

I just wanted to know if it's possible to take it on the Saturday too, given that I take Methotrexate on a Friday eve. I used to take it on the Sat ONLY. But now this new Rheumatologist told me to take it every day except from Friday and Saturday. But I think that the reason why I got a huge hangover like headache and nausea until today is because I haven't taken it the day after Methotrexate, as I used to. x

[nomoreheels in reply to regina79]

I would think then yes it's possibly more likely to be the MTX that's causing the headache with you not taking your folic acid dose the day after as you would usually do.

I've been on MTX a long time so have played with reducing folic acid before now. I tried not taking it Sunday & was ok so a few weeks later didn't Saturday either (I inject on Wednesdays) & again was ok, this was when I was on a lower dose MTX. I was fine so continued just taking it Mon, Tues, Thurs & Fri. It's only since going up to 20mg I take it every day except MTX day.

If you don't manage to ask your specialist nurse & decide to try & see if it helps it would make sense not to take it until the Saturday evening as you take your MTX in the evening on Friday. Taking it sooner, say in the morning if that's when you'd normally take it, it could reduce the effectiveness of the MTX.

[regina79 in reply to nomoreheels]

Fair enough... I guess that's why he's decided that. To see if it would be more effective this way. Let's see what they say, if they do reply. I have emailed the Hospital to the attention of the specialist I've seen...

I don't know who my Specialist Nurse will be so.. I couldn't address it to her. x

[nomoreheels in reply to regina79]

I'd like to think he/she will be compassionate & allow you to take it the day after!

[regina79 in reply to nomoreheels]

Let's hope so hey!

[KittyJ]

I would ring the clinic you were seen in as they would have the contact for the nurse.

[regina79 in reply to KittyJ]

Ok yes, if they don't email back I'll try and call them x

[Hidden]

Is the contact details in the front of your methotrexate book?Mine was, I leave a message but they don't ring me back like they should but that's not saying every hospital is the same.

[regina79 in reply to Hidden]

I was given no book... what is Methotrexate book??

[Hidden in reply to regina79]

You should be given a mxt book at the start. It's taken to every blood test so all the results should be recorded in it. Then you have a record and it should be taken and checked at the chemist before mxt is given. Also it should be taken wherever you are discussing your medical problem.

[regina79 in reply to Hidden]

Interesting. It hasn't been given to me x

[Matt06]

We have two specialist nurses in Tayside who are brilliant. If they are busy it can be two days before they get back to you but are always helpful and kind.

[Hidden in reply to Matt06]

Never heard of a methotrexate book

[JFlay]

regina79 & Hidden

It's a yellow 'shared care' booklet for you to record your blood test results etc.

I fill in mine but the hospital never look at it 😂

[KittyJ in reply to JFlay]

I think a lot of hospitals/gp’s have stopped using the book now JFlay. Mine did and everything is now online 😊

[JFlay in reply to KittyJ]

Yes, but I'm a bit nerdy and like to fill mine in from my online results anyway! 😂

[KittyJ in reply to JFlay]

Oh I do that too 😂

[regina79]

Yes, they gave me a link to the online hospital website. Where I can find all results and messages reg appointments and past visits xxx