AS pain increase

[Amb1xkr]

just looking for some advice on increase pain/flares. I seem to be having a lot of episodes recently and in new places that haven’t been a problem before. I’m taking 25mg methotrexate by injection increases about six months ago from 20mg . I’ve tried contacting rheumatology but no one answers the phone. Should I speak to my GP?

[helixhelix]

The GP might be able to put pressure on the rheumatology department, but they can’t prescribe rheumy drugs for you.

Keep pushing to contact your rheumy team as well.

[Celticdancer]

I have AS and have recently started taking cbd oil. I take 4800mg cbd oil and it really helps my pain levels. Check with the pharmacist to see if you can take it with methotrexate. You`ll be waiting an eternity for the Rheumatology team to answer that phone.

[Amb1xkr in reply to Celticdancer]

thank you that’s something I’d not thought about.

[Runrig01]

I have AS, and currently in a flare, where I don’t know what triggered it. I’m also on MTX 25mg, however I don’t find it helps spinal symptoms, and research seems to suggest the same. I use it for peripheral symptoms, and use Benepali the biologic for my spinal symptoms.

My muscles are all tender to touch, and rheumatology nurse was concerned when I seen her a few weeks ago. She’s booking me an appointment with my rheumatologist to discuss adding in another dmard as 25mg is the max they can prescribe of MTX. I assume your also using heat, I have an electric heat pad which is a godsend. I also have my electric blanket connected to Alexa, so I can switch it on by voice command without moving. I take Baclofen a muscle relaxant regularly to help with the muscle spasms, and even in a flare try yo do gentle stretches. I also go every fortnight for a deep tissue massage, with a therapist who understands AS. I don’t even have to tell her where my pain is. At the moment it’s my whole rib cage, which is fused, along with my neck and shoulders. Hope you find some relief soon. Contact your rheumatologist for a review of your medication, or contact gp to discuss meds they could add. I also take amitriptyline, and when in a flare can double my dose, which gives me a better nights sleep in a flare. Hope it settles soon 🤗

[Amb1xkr in reply to Runrig01]

thank you for the advice. I know from last years MRIs that there was something AS related showing on my spine and I did question about just having the methotrexate as I’d read it is for peripheral joints and not spine/pelvis. Me elbow was really bad at that time and is still not good but had a steroid injection in it which made an improvement. They have said there is damage in my right hip and is always tricky but I feel they should be treating the AS not just other joints. Nobody answers the phone at Sheffield hospital!!

[Runrig01 in reply to Amb1xkr]

can you perhaps email their secretary, and hopefully one of them could call you back?

[Amb1xkr in reply to Runrig01]

hi I don’t have an email address but cyber barn has just suggested I email PALs so will give them a try. Thanks everyone

[DenMum]

Hi Amb1xkrJust over a year ago, I was very ill with an infection (on MTX for RA). At the start I couldn't get a response from the Rheumatology phone line. I raised this with my consultant when I was finally admitted and he said the way to get a response is to have a blood test. If the result shows higher inflammation they will contact you. Worth a try I think.

Hope you are f better soon.

[J1707-]

same here kicking off all over the place jumping from place to another nothing helps.

[oldtimer2]

If you can't contact your rheumy eam at all, contact the complaints arrangement at your hospital by email/letter. I have found that works.

[Hidden]

Email and also ask your GP to refer you for an Emergency Appointment.

[Larmie]

Hi Amb1xkr , that's just awful you are in pain and can't through to Rheumy. I take Methotrexate 15 mg a fortnight. Also Humira biological injection. The combination works well for RA.I found emailing is best way to contact Rheumy. Also the GP and get bloods done. I hope you get relief soon.

[Angels54]

Hi had terrible pain I foot which couldn’t get any pain relief, advised to cut onion in half put it sock under foot for 1 hr “Amazing “ 👍

[cyberbarn]

PALS is your friend here! I don't know why more people don't know about it. Actually, the other day I was discussing it with an NHS trust employee from the Patient and Public Engagement department saying she doesn't know why more people don't use PALS either.

My Rheumy hadn't done a referral or written a letter she said she would so I emailed the rheumy advice line but copied in PALS. Within an hour PALS had sorted it all out.

You can find your local PALS contacts on the hospital's website or on the NHS website.

nhs.uk/service-search/other...

And more information about PALS here nhs.uk/nhs-services/hospita...