First nurse appointment

[Gottarelax]

Today was my first rheumy nurse appointment. I had requested it due to elevated CRP and it was timely because on Friday my GP refused to prescribe MTX without another blood test even though one wasn’t due. Anyway, the nurse was absolutely lovely. She spent a full hour going through stuff and getting a more senior nurse to take a look. I was shocked to hear that my liver enzymes were suddenly high. So they took blood there (they were kind enough to pick up the forms and have the nurse do it as phlebotomy was heaving) to check again. Upshot is that she’s prescribed more steroids so that I can stop naproxen again and also now added Sulfasalzine with MTX in the hope that the pain and inflammation is kept in check. I’ve got to wait for the blood test results and the nurse will call tomorrow. What I forgot to ask was what happens if liver enzymes are still high as I know they’ll stop all medication except the short steroid course.

Despite the surprising liver result, which the gp didn’t think to let me know, I’m confident that I’m in safe hands with the nurses.

[Marionfromhappydays]

Really great to read they are looking after you. Makes a big difference when you have trust in your rhematology team.

Hope things start to behave and you can get on with your new drug plan x

[oldtimer2]

I'm glad to hear you are getting sorted out. It's a pity that the GP didn't keep you informed as to why methotrexate was suspended! But you would have needed expert advice in any case, as all the GP can do is stop things, not initiate other treatment. The specialist nurses all have extra training so know much more in depth about one condition. The GP has to know about lots of conditions but in a more superficial way.

[Leics]

Oh your message definitely resonates with me too. I rang rheumy yesterday coz I only have one mtx injection left. Also rang GP because I could see full blood count results but not chemistry. Long story short my liver function is high too GP didn’t inform me neither did rheumy but I got a call from pharmacy at the hospital saying I needed to repeat bloods in my case I’ve been told to stop mtx until I get new bloods done. Normally that wouldn’t be a problem but I had to have a 3 week pause because of antivirals for covid infection. So I’m suffering badly. At least someone told me but not GP and not rheumy so I’m in limbo not knowing what to do. Hopefully it’s just a glitch for both of us but I had to come off mtx years ago because of raised LFT such a pity if I have to come off it again because it was making such a difference probably a bit premature thinking that and until now it’s been fine since August last year.

[Gottarelax in reply to Leics]

Oh that does sound so similar. I must admit I'd be a little more peeved if the rheumy clinic hadn't picked up on the liver test results. It seems hit and miss whether I get any blood results back so like you I could see the CRP and full blood count results but not the liver and kidney. I'm wondering if I can get all of my retrospective results back so that I can do my own tracking. This time CRP was up and haemoglobin etc down. That's why I called the nurse (and I should have seen her early in Jan according to the consultants letter). If I were you I'd call Rheumy again. If you're not averse, they may prescribe a course of steroids in the interim while they are working out what to do...that's what they have done for me.

[Leics in reply to Gottarelax]

Yeah I rang the nurse helpline this morning but even though I rang when they opened and then every 5 minutes thereafter I couldn’t get through. My CRP is normal but it usually is regardless of how I’m feeling unless I have a bacterial infection. My GP sat on the results too since last Thursday and I always get a telling off for chasing my results but this is why 🤬🤯 if I hadn’t chased my next prescription with the hospital I wouldn’t have known. I think because GP saw that I’d rebooked another blood test he just uploaded the results and figured someone had told me even though it says quite clearly they had to inform patient as part of the shared care. Grrr makes my blood boil. Anyway hope you feel better soon. I’ve got more chasing to do it seems.

[Deeb1764]

Ahh it lovely when you come out feeling be listened too and things explained so a positive day x

[Gottarelax in reply to Deeb1764]

That's exactly how I felt. They answered all my questions and didn't dismiss anything that I said about my health. The consultant was good but his time was more limited so there were things that I probably should have been informed of that were missed. Now I feel much more confident that there is a plan moving forward and I will be able to raise any concerns on general health that arise and I'm not sure are related.

[Deeb1764 in reply to Gottarelax]

Mentally it does so much for you too and then in turn this helps the body 😘

[Sky42]

I've found that if the GP does the paperwork for bloods I can see my results on the NHS app, if the hospital does the paperwork I can't. I now ask the GP for a copy of the hospital has done the request. That way I definitely know they've been looked at. I check them as well.

[Hidden]

My Rheumatology Nurse is fantastic. Many GPs have very limited knowledge of RA so its best to use the helpline etc.

[Gottarelax]

Update: had a call yesterday with normal liver results now and cleared to start my new drug regime. Have high hopes - might be steroid induced euphoria 🤣