Can't wait ..: I can't wait for the new drugs to come... - NRAS

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Can't wait ..

sylvi profile image
24 Replies

I can't wait for the new drugs to come. I have been in so much pain again thanks to steroids. My rheumy dr wanted me off the steroids and i took four months to wean myself off them and guess what,yes i am back in flare and i ache worse than i can ever remember. My nurse has since put me back on steroids at 5mgs for two weeks and then we will see what happens. My fingers hurt worse than they have ever been since i have been diagnosed ten years ago. All i seem to do is cry with the pain. I have even shut my laptop down early because of the pains in my fingers.

I hope you are all better than i am.

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sylvi
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24 Replies

Hey Syvie, it makes me so sad to read how awful you're feeling :( I really wish there was anything any of us could do for you!! I hope the steroids kick in soon and I'll pray for you even though I'm not religious (it can't do any harm can it?).

All the best and I'm really hoping things get better for you soon, Christine xx

nellysgran profile image
nellysgran

Hi Sylvi, so sorry you are still feeling awful and in so much pain, I hope you get some relief soon, sending gentle hugs,

Wendy xxx

sylvi profile image
sylvi

Thank you ladies, am hoping that the anti-tnfs come in when i see the rheumy nurse next month. I am sorry i am so sad about all this,but it is as it is. Wish we could soon have some lovely weather and i think we will all be able to pick up with our health.xxx

alibonura profile image
alibonura

so sorry your having a bad time, you dont have to be sorry for feeling so sad we all have days like that more often than not......... hoping you get some relieve soon, we all know exactly how you feeling, big gentle hugs coming your way Sylvia

lots of love Ali xxx

miss profile image
miss

Syvi i hate hearing your in such pain. Why do you have to wait another month? Can't it be speeded up a bit. Steroids i know are great short term but not so good for us long term.

Hope your wait is not to long very gentle hugs xx

sylvi profile image
sylvi

Thank you all,the new drugs if they come are anti-tnfs hence the wait. You are all so kind to me and it does warm my heart to know so may of you care so much. Love to you all sylvia.xx

Neverwell profile image
Neverwell

So sorry your in so much pain hope the tnf drugs coming in

Soon so you will feel better hugs Karen x

sciqueen profile image
sciqueen

Hi hun

Sorry to hear you are not feeling so good, hopefully the steroids will take the sting out.

Get well soon, sending ((((())))) cyber hugs

Joanne x

hi sylvi. tried to get off to zero today and guess what yes youve got it and ive got it too , both!! agony, v bad night,

sylvi profile image
sylvi in reply to

We are a pair aren't we.xxxx

helixhelix profile image
helixhelix

it seems so unfair the way this disease has attacked you, and never lets up. Like Miss I wonder if there's anything you can do to speed up the process so don't have to wait too long? Have you had the green light for anti-tnfs, and had whatever checks needed before you can start them, like chest x-rays and so on? If not can you call your rheumy nurse to see how it's going and get an early appointment? It seems so mean to leave you in so much pain, and I really feel for you. Px

petalnumber2 profile image
petalnumber2

Hello Sylvie,

It really troubles me that you are in so much pain that it reduces you to tears. I'd love to give you some hugs :-)

I have had more pain in my hands, particularly knuckles these past weeks, but I havn't had to put up with it all for as long as you have!

It takes some time to get us through the criterior before starting on anti-tnf's, doesn't it. I'm seeing my Rheumy nurse early tomorrow morning for catch up on this new trearment, I've got two exrays to have done yet, so I hope she will arrange those tomorrow, and then there are two Das 28 scores a month apart, one tomorrow and again next month.

I'll let you know how I get on tomorrow. In the meantime I hope you have some relief from your pain, particularly a decent night's sleep. Love June xxx

Hi Sylvi

Sorry to read that you're in a lot of pain... You were lovely to me when I first joined this site a bit scared and bewildered.

Hope you get the drugs you need soon and that you manage to get some rest tonight.

Maddie xx

sylvi profile image
sylvi

I have passed the criteria and i have had the blood tests done and i go bak in about 2-3 weeks times and hopefully i will know then what is happening and i hope they give me a prick of steriods.

Thank you girls and i wish you both a good nights sleep and all of my friends a god nights sleep. Love sylvia.xx

lorann profile image
lorann in reply tosylvi

Sweet Sylvie, that's the part we'd like to see speeded up..the 2-3 weeks time! Gosh, tell your consultant nurse how things are and have been for this long and see if she can push it up sooner. Seems inhumane to make you suffer like that Wish I could send you some of my Simponi and Vicodin and tramadol! Good luck, keep pushing for immediate attention! Love, Loretxxxxx

Shell1967 profile image
Shell1967

I hope you are feeling better soon sylv,feeling very sorry for you right now :((( lots of love and take care of yourself love Michelle xxx

aligator profile image
aligator

Good night Sylvi, I hope you have a good night sleep, as well you can. I really hope you find some peace & relief soon. I feel so sad for you. Life can be so unfair.

Love Alison xx

Munchkinella profile image
Munchkinella

Sorry to hear you're in so much pain Sylvi. Sending many gentle hugs my lovely. I hope you manage to get some sleep and wake up feeling a bit better. Love Janet xxx

sylvi profile image
sylvi

Morning ladies, Thank you all i had a good nights sleep and i feel good in my head even though i am stiff and sore. My rheumy appointment won't be long in coming and then i'll know what i will be taking.Hope you all have slept well and have a good day.xxx

Sylvi I'm coming late to this but I'm so glad you are feeling a bit better this morning and that you slept well. What a difference that makes. I really hope you get onto one of the biologics as soon as possible and pain becomes a thing of the past for you - now wouldn't that be so wonderful?! Hugs, Tilda xx

Hi Sylvi,

How are you feeling today. Thinking of you. I wish I could post you to sunny spain or somewhere warm like that. Hang on in there Sylvi, it's been a long time coming but lets hope the anti TNF turns things around for you. Judy xxx

cazh profile image
cazh

Hi Sylivi,

glad you had a good nights sleep. Hope you get a better day today. Sending best wishes and some of the lovely sun (what's that?) that we are having here your way.

Caroline.

sylvi profile image
sylvi

Well the weather in bulkington is very cold and freezing wind. I did think i might walk up the village,but soon changed my mind. Not sure yet what i will be doing probally just sitting here with the papers and you lovely lot.xxx

mille profile image
mille

Just think Sylvi, in a couple of weeks you will have the new meds and the weather will be getting warmer and you will be skipping about like a spring lamb. Take care and stay warm xx

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