Again a long time. : I’ve mostly been relaxing the last... - NRAS

NRAS

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Again a long time.

Ccrowlu profile image
20 Replies

I’ve mostly been relaxing the last couple weeks. Just relaxing and doing things I like to do such as draw, paint, and read. Also eat. Lol. I have been in pain the last couple days but managed to stand to stand up long enough to take a shower and wash my hair as well for the first time in forever. I had a little freak out because my hair was falling out but it might’ve just been because I always have my hair in a pony tail... I hope that’s all it was at least. How is everybody here doing though. I want to know how you all feel and how treatment is going.

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Ccrowlu profile image
Ccrowlu
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20 Replies
Annie122 profile image
Annie122

hey im not doing too bad still in pain everyday but you get used to it do you have rhematiod arhritis? were r u from? im on a treatment called enbrel its quite good :-) what treatment are you on?

Ccrowlu profile image
Ccrowlu in reply to Annie122

I do have RA. I’m in USA currently in Ohio but I move every few months or so. I’m currently only on pain meds. For a year I was told that I’m too young to be on any meds that slow the progression of the arthritis but found out I should be on one anyways so I’ve been trying to get in.

Annie122 profile image
Annie122 in reply to Ccrowlu

ah cool your from usa im from ireland :-) what age are you? ive been on ra drugs from i was 16 and i was never told i was too young to be on them its better to be on treatment so your joints will get less damage

Ccrowlu profile image
Ccrowlu in reply to Annie122

I’m already as damaged as someone who’s had it for fifty years while on medications lol. I’m sixteen years old currently. I was diagnosed when I was fifteen but have been in pain since 13. So I’ve had it for several years and possibly my whole life with no symptoms until more recently.

Annie122 profile image
Annie122 in reply to Ccrowlu

ah sorry to hear that hope you get some relief :-)

Ccrowlu profile image
Ccrowlu in reply to Annie122

Me too.

Kai-- profile image
Kai-- in reply to Annie122

.

Annie122 & Ccrowlu, don't know if Katy's experience might interest you? 🤔

Katy's had disease from 10 months old up to current age of 26: m.youtube.com/watch?v=s3GAU...

.

.

Annie122 profile image
Annie122 in reply to Kai--

Thanks its good to no im not alone :-) x

Annie122 profile image
Annie122

take care

Ccrowlu profile image
Ccrowlu in reply to Annie122

You too. Hope you get some pain relief soon

Annie122 profile image
Annie122

thank you :-)

Mandy8175 profile image
Mandy8175

No rheumatologist yet? I was hoping to hear you had been to get some meds!

I am in a systemic uproar still, my esr was 96 at my last appointment just before Thanksgiving. My methotrexate and sulfasalazine dosage has been doubled but my numbers haven't changed! Humira or Embrel getting added next month!

Ccrowlu profile image
Ccrowlu in reply to Mandy8175

Wow. I don’t think I’d survive on that many meds. I already have a pharmacy in my bathroom. And just waiting for the 20th to come since I have an appointment then

nomoreheels profile image
nomoreheels

Pleased to hear you have an appointment date. Bet it can't come too soon. Keep yourself occupied as you are now & it'll soon pass. Let us know how it goes? Take care. x

Ccrowlu profile image
Ccrowlu in reply to nomoreheels

Of course I’ll finally know my levels and hopefully get new meds

nomoreheels profile image
nomoreheels in reply to Ccrowlu

Everything's crossed it happens this time for you. x

Ccrowlu profile image
Ccrowlu in reply to nomoreheels

Me too. If we break down again or something happens that we miss it and have to cancel again I’m gonna just walk there myself and say you better treat me right now

Ccrowlu profile image
Ccrowlu in reply to Ccrowlu

Lol

nomoreheels profile image
nomoreheels in reply to Ccrowlu

It'd better not happen, you've just got a new camper!

Ccrowlu profile image
Ccrowlu in reply to nomoreheels

Yeah!!

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