Some better new: Hi all, I had a face to face... - LUPUS UK

LUPUS UK

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Some better new

LouLamb
LouLamb

Hi all,

I had a face to face appointment at Guys hospital today. I haven't seen the consultant there for 13 months. I've come aways very pleased. His given my steroids for 3 months starting at 20mg then reducing. Also given me something for my raynaurds again.

He said he thinks I need to go back on methotrexate. Even if I can tolerate a low dose of 10mg. He didn't prescribe me any as he said it needs to be done locally because of blood test monitoring. It's not worth it travelling to Guys hospital just for blood test as I live quite far away. So his writing in my letter to recommend starting that again. So hopefully the local hospital will listen. He did not mention fibro once. I didn't tell him that my local hospital was trying to diagnose me with that. I wanted to give him the same info I gave her and see what he came up with, I didn't want to put the fibro thought into his head.

Basically his conclusion was to keep taking the hydroxy but maybe it's not working as well now. So I should take methotrexate as well. I got some bloods done there today as well. I really hope now that if he writes to my local hospital they will take up his recommendation for it.

I never get my hopes up for these London appointments as they always seem to go badly. I've honestly come away feeling so great from it. I never expected anything as I don't want to disappoint myself. So now the wait will be to see if the local hospital give me the meds or try to carry on with that the problem is fibro. But I'm not that bothered right now as I have steroids for 3 months and that will defo help me out for a bit.

Thank you to everyone for your lovely comments on my previous post. I don't often get down about things. I always just get on with things have done my whole life so far. I think it was just that in the space of a 5 minutes phone conversation I went back to being the 15 year old who had no clue what was going on.

I'm looking forward to taking my steroids later and getting back to things as I was!!

Hope everyone is well 😀

25 Replies

Pleased that went well for you. Seems you handled it very well. It is important to have the blood tests when on methotrexate.

LouLamb
LouLamb in reply to baba

Thank you.I've been on methotrexate twice before in the past. I can remember all the blood test. Before I got lupus I use to hate needles still do in a way. Defo having all them blood test made me a trained pro at it !!

Does the GP not manage the methotrexate? That's what usually happens, it is just that a consultant has to approve/initiate its use.

In the uk Gps only prescribe when a shared care agreement is in place

Yes, I know that is the official line - but I do know people in mtx who have never seen a shared care agreement! And isn't that what the Guys bloke is doing?

eekt
eekt in reply to PMRpro

That's my ex-rheumy! Never seen a shared care agreement! xxx

LouLamb
LouLamb in reply to PMRpro

Previously I’ve gotten started by the hospital consultant. Then my gp put it on my repeat Prescription but hospital monitored bloods. So I think it has be started by the hospital first .

PMRpro
PMRpro in reply to LouLamb

But isn't that what the Guy's bloke is doing?

LouLamb
LouLamb in reply to PMRpro

In the past I’ve had to have 3 month prescription from local hospital and then my gp will prescribe. But I think he wouldn’t do it because I’d have to go to London get bloods every time. As the bloods I get at my gp can’t be accessed by guys

PMRpro
PMRpro in reply to LouLamb

But you can send them to him can't you?

LouLamb
LouLamb in reply to PMRpro

Yeah I suppose so. I get where his coming from as it’s easier to be done locally I guess.

Barbara17
Barbara17 in reply to LouLamb

I have to get my mtx injections from the consultant. It does show on my repeat prescription list but local GP won’t prescribe it!

All hes doing is putting in the hands of the local hospital who should then put a shared care agreement in place.I have SCA maybe its different for mmf 🤔

Lou I’m so happy for you hun. My prayers were answered which I’m so thankful for. You take care and be safe and remember we’re here whenever you need us.

Looking forward to your post of how much better you’re feeling.

🤗♥️🥰🙏😍

EJ

I’m so pleased that your appointment went so well x

I’m delighted your appointment went so well. The steroids should work really quickly and give you time to build up with the other medications. Good for you for getting the most out of your appointment and let’s hope the local hospital has the sense to take the advice. 🤞

LouLamb
LouLamb in reply to Barbara17

I took the steroids last night along with my other meds. I can honestly say I've had the best sleep ever. I went to sleep maybe around 11ish last night and woke up at 10:30 today. The best part is no pain this morning like I usually get when I sleep for long times.

Barbara17
Barbara17 in reply to LouLamb

They have that effect on me too! Magic pills. I’m now trying to come off them and that’s not so easy ☹️

LouLamb
LouLamb in reply to Barbara17

I’ve come off then in the past. I find that I need a slow reduction. I usually end on 2.5 or 5. This time I’m going to be ending on 7.5. I’m not worrying about that now as that isn’t till April .

Barbara17
Barbara17 in reply to LouLamb

I didn’t mean to put you off taking them. They really do make a difference. I’ve been on pred since November 2019 and know I have to try and reduce. Good luck to you and I really hope things improve for you. 💐🤗

LouLamb
LouLamb in reply to Barbara17

I know it can be hard to come off them. When I’ve dropped in the past from 5mg I’ve found it hard. And was lucky to get more and slower reduction. They can be so helpful steroids but also not in a way.

Hope you managed to come off them when you can 🙂🙂

It’s always good to see a happy Lou. Best wishes Kevin

That is great news Lou. I am so pleased everything went well for you after that upsetting phone call. Hopefully now the local hospital will be more cautious in bandying about random diagnoses. Xxx

Hi Lou. I'm so, so glad to hear you had a good rheumy consultation, especially after the last one. Upward and onward, you're one very brave warrior. I for one, just knew you would come through to fight again, xxx

Hi lou, just want to say im so pleased your Guys appt went so well and your back tsking steroids and mtx. The steroids are magic giving quick relief!. Helps us cope and im glad you can go back on mtx as im taking it again and its helped me.

Hope your family are ok and your all keeping safe. Xx

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