Outcome of f2f: Well it was lovely to see my nurse... - NRAS

NRAS

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Outcome of f2f

J1707
J1707

Well it was lovely to see my nurse again but what a Palaver getting into the hospital 🙄. I havent seen her since January. She could see straight away my disease is active and etanercept isn’t doing it’s job and agreed to give me a steroid injection.

We chatted about my weight gain since being etanercept over a stone. Showed her my food diary and she said you must be starving😁she felt it’s probably the etanercept. Then had a chat about my burning feet and how painful it was she felt my feet she couldn’t believe how incredibly hot they were. So we went Over my diary since January when my mtx increased I had burning on top on my toes and we may have found a link . After my marathon sleeping in March I had about 4 weeks of a break from methotrexate before the joints started complaining and 6 before I restarted mtx on a lower dose and I was really good long walks doing exercise etc. Then things started playing up a bit so they doubled mtx In July and then my problems started big time and the crippling burning in my feet. So she isgoing to talk my consultant as I’m a bit of a phenomenon 🙄. So starting Baricitinib in 4 weeks and once settled reduce mtx but need to grin and bare it till then.

23 Replies
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That's great and sounds like you had a really productive meeting. Hope it all goes well on the Baricitinib and that you can finally get it sorted. x

Great that it was a successful meeting 👍

I presume that she didn't say anything about having to shield following the steroid injection? 💉🤔I only ask because that's what the nurse said when she offered me one in July so I didn't have it. I think that it's probably because my clinic decided to err on the side of caution and tell EVERYONE to shield regardless of their medication regime; I decided that was overkill so didn't shield but as I wasn't really struggling at the time didn't have the injection.

J1707
J1707 in reply to Boxerlady

No I got the opinion it’s more dangerous during a flare.

Boxerlady
Boxerlady in reply to J1707

That's what I thought (and still do) but she said that the doctor (not my consultant - maybe a registrar/locum?) had said that was the current advice. As I wasn't feeling too bad (and was out and about very little) I decided to wait for my new medication. I'm sure that in your position I would have had it.

Knit12
Knit12 in reply to Boxerlady

I think the medical advice has changed re the steroid injections. I had one in August. Im in Aberdeen, and everybody knows the hellish problems we had after the shielding was lifted. I was originally told that early April but it seems as they knew more the advice changed

Boxerlady
Boxerlady in reply to Knit12

Interesting.... This was in July.

Knit12
Knit12 in reply to Boxerlady

I have the feeling every area is different. I know a lot of people were complaining they were having flare ups and couldn’t change their meds. I went into shielding the week before the country, by the time I came out I had tried 3 different biologics, been on steroid tablets and had a steroid injection in my bum and in my hand. I consider myself fortunate that I have a brilliant relationship with my rheumatoid team and consultant, not to mention 2 f2f, 4 telephone consultations and numerous emails. I just wish I could find a medicine that works and agrees with me, but not for lack of trying

Boxerlady
Boxerlady in reply to Knit12

Yes, definitely different between teams 😕

I queried the advice to shield as according to all the advice I'd seen, I wasn't in that category and was told that they'd made the decision not to personalise the advice but to simply tell every patient to shield. I then made a personal decision not to shield but to be very careful and strictly social-distance which felt right for me.

My team have been great though; my medication has been changed (and I'm very lucky in that it seems to be starting to work) and I've had several telephone appointments and a f2f so I'm very happy with them. I wish that everyone could have the same great service and really hope that you find the right regime for you soon 🤞

Knit12
Knit12 in reply to Boxerlady

I finally got my shielding letter on week 10 of shielding a total shambles. I put down to get help shopping and nothing. I was waiting till 2 in the morning to book a spot for home delivery. Not good since I was shielding and also full time carer for my mum. I also heard from my GP that shielding letters had not been sent to any of their cancer patients. Total disaster. Good that you are getting great care x

Well that’s sounds like a plan and hope the next few weeks won’t be too bad for you. You know where we are if you need us x

Keep your pekker up. Glad she listened and is going to talk to the consultant too. x

Sounds that you have been listened to and your specialist nurse is very helpful. I am jealous but happy for you 😊😘

That sounds like a productive consultation (as they should be!). Glad you've got a plan and a way forward.🤞crossed for you😁

I'm pleased you finally got to 'see' someone again. Sounds like a fairly good appointment and that you were listened to, and given some appropriate treatment and a plan.

I hope it felt like that for you. 😊

J1707
J1707 in reply to Kags1068

It did . I knew something wasn’t right it wasn’t just Ra but I couldn’t find a reason . it was a light bulb moment when we realised that it could be the higher dose MTX the more I think about it the more it makes sense. I really hope this is it . isn’t the support on here wonderful..,😊

Kags1068
Kags1068 in reply to J1707

God, isn't it a relief when something like that happens? (if that's not an odd thing to be pleased about)!

The amount of times I've doubted myself (and still do) about something not being quite right and then it twigs and suddenly it all makes sense ..........!

Glad it happened for you!

Yes, it really is nice to get that support isn't it? I think people enjoy giving it too - helps them feel at least something useful has come from their experiences perhaps? 😊

So good when you feel like someone is listening to you , 🤞for your next treatment x

I can hear the broad grin in your post! Great news, so positive. It’s so uplifting when you feel listened to, taken seriously and then a way forward offered. Sounds as if the increased MTX was the culprit after all....let’s hope baracitinib is the answer. Bet you can’t wait 😀

J1707
J1707 in reply to CallMeSunny

Bring it on !!! 😂

That sounds like a fantastic f2f. 🤞🏻 that you can move on quickly and this is the one 🤗

Glad you had a good meeting with the nurse and your meds have been sorted. Hopefully you will find much improvemen

Hoping for good results with Baracitinib for you J1707! I’m discovering I have a love/hate relationship with methotrexate myself, Rheum has reduced my dose to see if it helps with my awful fatigue, which it has but pain and swelling now worse. If only there were a miracle drug that could do it all without knocking us sideways! Let’s hope it is Baracitinib for you. 🤞🤞 (both hands) xx

Hope Baracitanib works for you. Let us know how you get on x

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