Changing medication

[Sebastian247]

Hi all. I thought I'd update on my struggles with changing medication.After my GP wrote to rheumatology i had a call from rheumatology for an appointment on Friday with a different consultant.

After going through my history, symptoms etc he said i was experiencing neurotoxicity to mtx and to stop taking it immediately. He said it was rare on the dose used for RA but potentially serious.

He's switched me to Lef, and reassurred me if i cant cope with it we can try something else.

I was so relieved, and grateful. I'd already decided i would have to stop the mtx regardless, due to the side effects making me so unwell. Its frustrating its taken so long to get to this point, after several appointments. But at last someone has listened and taken my issues seriously.

I've a post covid cough and wheeziness so I'm delaying starting the Lef.

I also asked about my knee xray results after 6 weeks of waiting for results. Hey presto they had them four weeks ago, but nobody had bothered to contact me. Severe degeneration in both joints, which i wasnt expecting and referred to physio.

Anyway I'm just relieved that someone has finally taken notice. Hopefully I'll get my life back now.

Thanks for the support and advice. I wouldn't have got here without you all.

Seb

[helenlw7]

That’s really good news.

[Sebastian247 in reply to helenlw7]

Thanks. Without the encouragement here it wouldn't have happened.

[Boxerlady]

That's progress - sorry that it's taken so much effort on your part but hopefully things will improve with the new consultant 🤞

[Sebastian247 in reply to Boxerlady]

Thanks. I feel fortunate despite the struggle, and so grateful for the support from everyone here.

[Amnesiac3637]

Ah, very glad you’re finally getting sorted out after such a mess with the meds. It does take persistence these days! Hope physio has some effect on your worn knee joints though I suspect you may end up having to have replacements - but not too soon.

Hope when the covid has departed, the Leflunomide will be a good drug for you and you start to feel much better soon. All best.

[Sebastian247 in reply to Amnesiac3637]

Thanks. I suspect you're right about my knees. But hopefully that's a few years away. I already feel better just knowing things are changing. Thank you for the support.

[virtualreality]

That is fantastic news about the change of medication, Seb - thank you so much for sharing this update with us! I'm so pleased and relieved to hear that you have finally been listened to, your symptoms properly considered, and an alternative medication offered. Success! I really hope the LEF works out well for you.

[Sebastian247 in reply to virtualreality]

Thank you for being so kind and supportive. I wouldn't have persevered without the help from you all here. Best wishes.

[Fluffontoast]

That's great news about the meds. I hope the physio will help with your knees. Keep us posted.

Btw, regarding your xray it is frustrating when our health professionals don't communicate effectively isn't it! I've found most individuals to be helpful and knowledgeable but the communications and systems quite incoherent and hard to navigate, although I'm getting used to it now. There doesn't seem to be a single point of contact like a project manager to coordinate your care, so you have to advocate and coordinate for yourself. Not sure how less able people cope with that.

[Sebastian247 in reply to Fluffontoast]

I totally agree. It took me a while to understand GP practice and hospital are two separate systems and work in completely different ways.I had xrays on my knees and ankle at the same time, knees requested by rheumatology and ankle by my GP. I had the ankle results from my GP within two weeks, and six weeks later get the report for my knees, coincidentally when I ask about it at a rheumatology appointment. I'm certain the radiologist would have written both reports at the same time.

I am learning, slowly how to navigate the system and self advocate, but you're right, how do less able people manage and not lose out on the right care and service.

Best wishes. Seb.

[Sebastian247]

Thanks. I was OK for the first year, once feeling sick was sorted by increasing folic acid. Then I started to get very tired and brain fog, dizziness and concentration and memory issues plus a mild but constant headache.

The symptoms gradually became more severe until I found I was struggling to do normal things. I kept getting confused and forgetful. I was thinking I might have to stop working and was too tired to socialise or get any exercise. I was in bed by 8pm most nights.

Apparently neurotoxicity is rare on the dose used for RA. But I wish I pushed harder to get help sooner instead of trying to cope with it.

Hopefully you'll be OK on the mtx. Lots of people with RA take it and live normal lives.

Best wishes.

[WilfDog]

HiGreat to hear you have been seen and heard. It's a relief isn't it to know someone is out there supporting amd advising you.

I hope your post covid cough allows you to start the Lef sooner rather than later.

Physio is brilliant and I'm a total advocate for exercise. I hope it helps your knees x

[Sebastian247 in reply to WilfDog]

Thank you. Yes it's a relief when you finally feel you're being listened too. I mentioned to the nurse yesterday when having regular blood tests i was delaying taking the drugs due to a post covid cough. She insisted on speaking to a doctor and arranged an appointment this morning about it. Sonetimes the NHS and especially staff are brilliant. And thanks for the encouraging words about physio. I was referred to physio for help with my ankle. That was two months ago, so I guess it'll be quite a wait. But at least I'm in the system now.

Best wishes. Seb

[WilfDog in reply to Sebastian247]

Hope all goes well. Good luck x

[ABwn]

Good luck. Hopefully you will now start to feel better with new medication. If it doesn't work you know you will now be listened to.

[wilbertjellyfish]

Brilliant. Really pleased to hear good news.

[Rubygirl08]

I'm so glad you had a consultant who listened to you, keeping fingers virtually crossed that your new meds get you back on track 🤞 x

[Tealblue2]

I’m really pleased you got there. Hope you feel better soon

[Otto11]

it’s a great feeling when someone actually listens to you. I had similar with Endocrinology & could have hugged the consultant when he actually listened. I’m sorry you’re having to go through the stress to get to this point. I hope Leflunomide works for you.

[Sebastian247 in reply to Otto11]

Yes, I think i know exactly how you felt. I shook his hand at the end of my appointment i was so grateful, but i could have hugged him!At this stage I'm not worrying about if Lef works for me. I'm so just happy I'm not going to be feeling so unwell due to the mtx.At some point the reality of starting a new drug, with the unknowns and potential challenges will hit me. But for now I'm just enjoying the moment.

Best wishes. Seb

[Otto11]

👍🙂