NRAS

FEELING AWFUL

HELLO EVERYONE . JUST NEED SOME HELP/ADVICE PLEASE. MY MTX WAS STOPPED 4 WEEKS AGO AND I SEE THE CONSULTANT NEXT WEEK TO SEE WHERE WE GO FROM HERE. UNFORTUNATELY ON SATURDAY EVENING I HAD MY WORST FLARE UP EVER AND DIDN'T KNOW WHAT TO DO ABOUT IT. FELT VERY ISOLATED. HAVE TELEPHONED RHEUMATOLGY NURSE ON SUNDAY AND LEFT MESSAGE BUT NO RESPONSE YET [MONDAY EVENING] . WHAT DOES ANYONE ELSE DO ?

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Hi, if I were you I'd take some pain killers (in case you didn't already try that). If you have some, you can apply hot/cold-patches where the pain is the worst. What helps me too, is to drink warm water with honey and tumeric (or cinnamon) before going to sleep, it might reduce pain and make you sleep better if you have troubles with that too.

What I ALWAYS do in such situations, but you probably dont have any right now, is vape CBD-Oil, it reduces pain and flare ups after just a couple of minutes so maybe you could give that a go aswell.

I hope this was in some way helpful & I wish you all the best,

Isa

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Thank you very much and very helpful. Unfortunately I don't have access to CBD oil as I live in the UK. Do you know how I can get any?

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I get mine here: cbdking.ch/collections/cbd-...

Quickly did some research and found those in the UK:

cbdoilsuk.com/shop

painfreehempoil.com/product...

and there's a lot more :)

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Sorry but what is cbd oil?

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CBD oil is made from Cannabis. It is readily available in the US with a Medical Marijuana card.

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Unfortunately we can't get it in UK

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You can get it on line? There is also a shop in Chester not sure if sales are on line, seems to be quite responsive at the moment I'm thinking about it but hoping in a table form or drops not using a vape?

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Thank you. I too would prefer drops or a salve to rub into the swollen ,painful joints

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Hi, it is available in the UK. CBD oil has no THC (the psychoactive component) in it so it's legal. The law in the UK prohibits concentrations of THC above 1.5% (I'm fairly sure it's that level - well under 2%) being sold. Which is why you can buy cannabis seeds in the UK.

There are a large number of components in cannabis oil which are beneficial to humans. Most animals have an endo-cannabinoid system with which cannabis products interact.

You do not need any authorisation to buy CBD oid or other products like tinctures, balms or creams.

A lot of people get relief from them.

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Thank you

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Hope you get a response from your rheumy's Tuesday and get some quick help. Blessings and hugs to you.

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Have heard from nurse this morning and the best that can be done is a cortisone injection on Friday morning 😥

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How are you? Can you go to the emergency room? I hope you have some pain pills and are feeling better now.

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I have had an injection on Friday and it has just started to work today [ Sunday ] so feeling more comfortable. See the consultant next Friday so will then know what is in store for me. I now know I can't go without the cytotoxic drugs if I want some sort of life

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Hi, if I were in your shoes I would go to A&E they would need to help even if it's with a pain killer such as a cortisone injection.

I wish you well x

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Longer term I would discuss alternatives to mtx when you see the rheumatologist. I suffered similar but eventually was put back on leflunomide. Ok so far. It feels much milder than mtx in the effects but has bolstered the biologic I take

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Thank you all very much. Very helpful . This is my first major flare since being diagnosed last year and took me completely by surprise. Not pleasantly though.

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sorry 4u - ucan get cbd oil and also cbd vape in uk , go online, also ask gp. it's ok'd for medical cases. where in uk are u? it didn't help me but i'll see if i can get info 4/2u.

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Hello, thank you . I live near LYMINGTON in Hampshire

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aaah - i am from wallisdown btwn bmth - poole but now in belfast [for 50+ yrs and my sins] - will try n find out what's near you xx

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SHOUT LOUDLY at GP, nurse, rheumy... coming off mtx can be a pig . I was there this time last year, off for 4+ months w/out meds so took painkillers and steroids i still had as no-one cd make any decisions... chest clinic n gp said it's up to rheumy who wasn't contactable and then asked for more scans of lungs etc. when i got appt i was in wheelchair which shocked her, but no more mtx - lung damage. lost 25% lung function/Now on sulfa and swims / singing has upped lung capacity to 95%. wishing you pain reduction xx

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I know how you feel when you have that flare ups I've been having blood test every week for the past two months I normally take my tablets on a wed I go and get my blood taken on a Tuesday depending what the blood level is if it's low no tablets . I have pain patches they last 12 hours I cut them up and put them onto all my painful joints. I'm not good with painkillers I take 8 paracetamol a day makes me sleepy sometimes during the day . But some days I am very tired try to do as little as possible as let only makes your painful joints worst. Sorry I cannot help you more

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