Blood tests for monitoring

[C-aches]

Hello out there! I have a question about monitoring for Lupus. My lovely and very supportive GP admits to knowing very little about Lupus. I am being seen and monitored by my local hospital Rheumy team, but I am not sure they have a real understanding of Lupus. I was seen at my first appointment by a lovely but hurried Doctor who added Methotrexate to the Hydroxychloroquine. I have been given a book for Methotrexate blood test monitoring, and currently having blood tests done every 2 weeks. After 6 weeks, at my follow up appointment with a nurse, I asked her if there was a specific protocol for Lupus monitoring as requested by my GP, and how often I should have my dsDNA and complement checked. She didn't think it was needed after diagnosis? Also she didn't know of a protocol for monitoring but said she would find out and let me know - still waiting! Any ideas/suggestions please!

[thestorm]

Hi C-aches, sounds like your in a pickle, sweet or sour. I would indulge yourself in some good lupus reading. There is a very easy informative and helpful web site I used and have passed on to others here. The site is called, lupus 101 basics. Just google it and check it out. You have to be your own best advocate. I had found it very helpful when even Dir.'s are not well versed, and nurses to. I hope all comes together for you. Be proactive, keep the faith, many are here to support you. Peace, blessings, thestorm

[C-aches in reply to thestorm]

Thank you so much for the advice and support! I think I am doing well, but frustrated at the perceived lack of communication. The lovely GP will only accept protocols that come from the Rheumy and not from me. I will keep trying, but finding the right path to walk is tricky. Don't want to come over as pushy and end up alienating the supportive ones. Thank you for your peace, and blessings to you right back.

[HazelW]

I think you'll find the blood tests are more for methotrexate monitoring than for general lupus symptoms. Important to keep an eye on your reactions to Metho.

[C-aches in reply to HazelW]

Thanks HazelW, I am a bit frightened about the Methotrexate and understand the need to stick to the blood monitoring - which I am doing. Just one blip with the white cells dropping but it seems to have righted itself now thankfully, as I really feel it is helping and want to be able to stick with it.

[HazelW in reply to C-aches]

Methotrexate has been my life saver - it has helped keep my RA under control. The rest of my Lupus symptoms are all fairly mild compared to most people so I have absolutely no complaints about taking Metho or going for 2 monthly blood tests. Hope things settle down for you. Good luck.

[eekt]

There's a UK guideline for SLE*, aimed at rheumatologists, and it lists the tests for monitoring, including dsDNA and complement. It's fairly new, published in 2017, so some docs don't know of it. There's great info on the Lupus UK website too, covering a huge range of topics.

There should be a Shared Care Agreement for both HCQ and methotrexate so your GP knows the full range of monitoring tests to be done and his/her responsibilities to be on alert for side effects.

Having a supportive GP who admits lack of knowledge is a very positive thing - that means he/she will team up with you as you learn to become the expert in your illness

Here's hoping the treatment plan is effective xxx

*academic.oup.com/rheumatolo...

[C-aches]

Oh thank you so much eek, I think this is exactly what I am looking for. Hopefully my lovely GP will find the time to read it, and also accept it if it is a UK guideline even though it comes from me and not the hospital! Thanks again for the excellent advice and support. Stronger together!

[eekt in reply to C-aches]

This forum is just the bee's knees for support and advice! Glad to have been of help...the guideline is lengthy (and it's the sole one for the UK, by the British Society of Rheumatologists), but you could print off the table for SLE monitoring (Table 7 I think) for your GP. Rheumy should be doing the dsDNA, complement etc xxx