New user : Hi I'm struggling with my desease at the... - NRAS

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Beatrice-74 profile image
22 Replies

Hi I'm struggling with my desease at the moment and felt that I could benefit from the support of other sufferers. X

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Beatrice-74 profile image
Beatrice-74
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22 Replies
Amy65 profile image
Amy65

Hi Beatrice 74 sorry to hear ur struggling .I have rheumatoid arthritis and anklossing spondlittis I'm on biologics find they help .are u on any of these amy

Beatrice-74 profile image
Beatrice-74 in reply to Amy65

Hi Amy, I'm having a review in January for biologics as I've had a reaction to the methotrexate, dizzy spells and ringing in my ears after my last shot but this has now subsided apart from ringing in my ears, so I dare not take this weeks and waiting for sos rheumatology to get back to me. How are you coping and are you on any other drugs along side?

Amy65 profile image
Amy65 in reply to Beatrice-74

Hi Beatrice 74 I'm ok it's my 8th biologic they do help I was on methotrexate slazaprine gold injections all made very sick so just on anti inflammatory pain kills biologics .I hope u get started on them they really help ra amy

Beatrice-74 profile image
Beatrice-74 in reply to Amy65

I've now had a reply from the rheumatology sos line they are seeing me on 12 January as an emergency and I've got to stop methotrexate right away.x

LizzieR profile image
LizzieR

Hi,

I'm so sorry to hear that. I'm thinking of you and sending you gentle hugs. Are you on medication? Can you go back to your doctor for some help? X

Beatrice-74 profile image
Beatrice-74 in reply to LizzieR

Hell thank you for replying and the hugs 😊 I'm currently on 25mg once a week methotrexate injection but last week I had a bad reaction and spent all week with vertigo like symptoms. I've an sos line to call but haven't had a call back as yet and so haven't taken this weeks injection and the symptoms have just disappeared, very scary to be honest. X

nomoreheels profile image
nomoreheels

Hiya Beatrice-74 & welcome. We'd be happy to have you here, although sorry to hear you're struggling. Anything specific we can help with just say, we are a supportive bunch, all in the same boat, some of us have wind in our sails & are happily sailing along, some of us don't but we all support one another through the rough patches.

We've lots of advice & info we can share between us so someone will always be able to help. 😊

Beatrice-74 profile image
Beatrice-74 in reply to nomoreheels

Thank you xx

Beatrice-74 profile image
Beatrice-74

Thank you so much, that means so much to me x

allanah profile image
allanah

Hello nice to see you. I hope you enjoy it here as much as I do. Also look up the NRAS website which is packed full of information.

How long how you been diagnosed and have you started any treatments?

Beatrice-74 profile image
Beatrice-74 in reply to allanah

Hello nice to meet you and thank you for replying, I was diagnosed feb2016

I'm on hydroxichloroquin, sulfazarazine and methotrexate 25mg injection once weekly. Plus deposit injection three times a year.

allanah profile image
allanah in reply to Beatrice-74

Sounds very like Me! Hope the treatment is helping?

Beatrice-74 profile image
Beatrice-74 in reply to allanah

I had a reaction to the methotrexate this week but hopefully it was a one off, I'm not feeling the benefit as yet so they are discussing Biologics? I see my Consultant in Feb so fingers crossed 🤞 well if it didn't hurt I would x

allanah profile image
allanah in reply to Beatrice-74

Yes mtx affected me too so I was moved onto biologics. They are good drugs!

Hope your managing the pain. GPS are the best to discuss good pain relief I found x

Beatrice-74 profile image
Beatrice-74 in reply to allanah

Yes I've got an appointment on the 4th January, I'm allergic to all opiates so I'm limited to pain relief but I've relied on depo steroid injection for a year now as I responded really well and it changes my life when I have it, but I've had my fill and now on a break this makes me sad 😔. I had virtigo like symptoms on Methotrexate injection what did you experience if you don't mind me asking? X

allanah profile image
allanah in reply to Beatrice-74

Just awful vomiting. But I just couldn't live with it. My only other reaction was to rituximab infusion but other people have no problems.

Take loads of 0hotos of your redness or swelling and a pain diary with you to your appointment as in the day aids sods law you feel ok! It just shows them what's happening x

Beatrice-74 profile image
Beatrice-74 in reply to allanah

Great advice thank you x I hope your feeling better.

allanah profile image
allanah in reply to Beatrice-74

Thanks. I really am. Can't believe it. Had a good Xmas thankfully x

Kai-- profile image
Kai--

Abundant spirit-lifting, support from mum of 3, Monica Aggarwal, ( healthunlocked.com/nras/pos... ), Beatrice-74. 😌 🙏

Please take kind 😌 & loving 💓 care of yourself, dear lady.

Very best wishes to you. 🙏 🍀 🌺 🌞

.

🎄 🔖 🎁 🎅 ❄️ ☃️ 🌨

.

Ruth12345 profile image
Ruth12345

Welcome. Sounds like medics are on your case and looking after you. Im not in remission yet after 14months but here is hoping for us both very soon. Take and if you dont get reply to your fone call try ringing again. All the best.

Beatrice-74 profile image
Beatrice-74 in reply to Ruth12345

Hi I had my call back today, I've got to stop methotrexate and they are seeing me on 12 January x

Ruth12345 profile image
Ruth12345

Pleased you now have been given advice. Now you have 2 weeks to go. Look after yourself

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