Hi all, good news at last !!!!! :)): Hello all hope... - NRAS

NRAS

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Hi all, good news at last !!!!! :))

18 Replies

Hello all hope you are all well,

i havent been on for a while as my right knee and hands have been really bad due to a couple of falls at home and unable to type. I attended my Rhuemy appointment with my new rhuemuy nurse Wed 27th March . Well she was absolutely lovely, she examined me fully, asked me lots of questions about my RA how i was feeling, How bad the pain was etc. I passed the assessment test for biologic medication and i will be going on Embrel in the next couple of weeks she explained it will be in the form of a pen injection, gave me all the information i needed on it, answered all my questions and gave me a number to reach her on once my injections are delivered and the nurse has come to teach me how to administer them. She even went through with me my doubting i have RA and my worrys about the medication. I couldnt have cimzi as i couldnt hold the needle and because i might have to have an operation soon on my thyroid, embrel is easier to get out your system before an operation. I felt relieved when i came out of my appointment and felt like she had put my mind at ease a little. I just hope this works now. My pain is easing now but have a very poorly right knee it has swollen badly and really painful. I fell twice because it gave way which started my hands off as i landed on them to save myself, hence not being on the site for a while. But hey i'm better than i've been of late and keeping my fingers crossed the embrel works for me. Im looking forward to sunday as my hubby and i are going to my daughters for easter sunday lunch so it will give me a break from the house. I would like to wish everyone a happy pain free easter. Best wishes soft hugs to all Lena :)) xxx. ps i have still stopped smoking and not missing them at all.

18 Replies

Well that is just so good, the second blog tonight with fantastic medical support. It is so helpful when someone listens to you isnt it?

From what i have learnt on here and the research i have carried out re ra medication,the embrel and other anti tnfs is that they appear to be the best and hopefully soon they will be the first stage of help as the side effects do appear to be much lesser and the drugs are more effective than the dmards.

Hope your knee improves and have a lovely Easter.

in reply to

thanks mads, I have been on metx, hydroxy and sala had severe side effects off them so have been really poorly of late . Hence the anti tnfs im hoping they work for me and i finally get amed that suits . happy easter hun . lena :)

petalnumber2 profile image
petalnumber2

Hello Lena,

Nice to know you got on well at your app with Rheumy nurse and starting Embrel like me. I'm waiting for a visit by a nurse who will show me how to inject. I saw my Rheumy nurse thursday week ago and she told me it should all happen within a month.

I have given up smoking too, it's 3 weeks since my last cig and thankfully like you I don't miss them at all. So, we're running parallel, you and me, accept I havn't had a fall like you. I can imagine how painful it must have been putting your hands out to save yourself, ouch ouch ouch!! :-( It only takes something like that to cause a big flare in joints, doesn't it.

I wish you a nice Easter and hope you enjoy your time with your daughter on sunday.

Take care of yourself, June xxx

in reply to petalnumber2

hi June, yes it looks like we are in the same boat, :) we'll have to compare notes to see how we are both getting on . Yes the falls were really painful, if the first was not bad enough i fell again two days after the first one so it put me right back, but i thank god they were on carpet and not on a hard cold floor or down the stairs so im thankful for that, I am getting there tho. Its been 1 week for me with my stopping smoking and already i notice a difference. Hope you have a nice easter too . hugs lena :))

Hi Lena. That is great news about the Enbrel - I've read of so many who have found it turned things round for them so really hope you another such. Take care and have a lovely time at your daughter's. Tilda xx

in reply to

Thakyou tilda, i am feeling quite positve about this and after helpful comments to me on the site about side effects from everyone have decided to forget about side effects of meds and try to think positive about things. I just hope it works for me keeping my fingers crossed. Im really looking to getting out and going to my daughters will be lovely and i get to spend some time with my genadsons who are 3 and 5 years old i love them to bits and cant wait to see them in there new home as she moved a week ago but i was unable to go due to being ill with the RA after the falls so it will be my first visit to her new home as well as an easter celebration. Have a lovely easter tilda hugs .lena :)) xx

ive had two aSSESSMENTS ! NO I passes the first!! dont know 2nd? final decision now moved til april 30th!! hoping to get enbrel? no knowing my luck and health trust wouldnt bank on it x

in reply to

oh ali so sorry, hope you pass this one and get it.I know you've been waiting a while now. How is your hydratherapy pool going is it helping thinking of going but wondered what its like ?

Its v nice the hydrothrapy pool they are warm and soothing. In my NhS Trust you get six free then pay!!,I had my free ones a long time ago, just had 3 of my 6 paid ones. I didnt go last wed cos of 2nd assessment.. they never tell you anything in my health trust and I was so upset at yet another wait I started snivellling( a JUNIOR DR) was observing and passed a box of tissues I left upset at end, bet that Dr THOUGHT Rheumatolgy is mean discipline!!( junior drs ( this one tall willowy female black dr) rotate throughout hospital departments as part of this training this already had good general patient observation skills and empathy as she noticed me wiping eyes, (was crying silently!)

How long did you wait for das score and did you have more than one done then have to wait?

in reply to

i'm so sorry ali, they just dont seem to understand we want to get better and move on with our lives , but sometimes i think they do it on purpose so they can research whats happening to us without the meds. I have never been given a das score but they must have took that into consideration as i know thats part of the criteria and i must have met it . I have been very poorly for 6months now and all my joints are effected they counted how many of my joints were painful asked me some questions did a blood test and said i did qualify with flying colours (good news for the drugs but not in my health wise) i just got to wait for the nurse to come with them to my house 7 to 10 days time. The hydratherapy sounds good how do i get it through the nhs Ali? I really hope you pass for the anti tnfs good luck hun , :) xx

Neverwell profile image
Neverwell

So sorry your unwell but glad your moving onto enbrel

Hope it works for you love Karen x

in reply to Neverwell

thanks karen , i am praying it works after the bad experience with the last 3 drugs , i'm hoping this one will agree with me and as people have said they are much better and so many people have done well on them i'm hoping it will be the same for me. :)) lena

Caza profile image
Caza

So pleased things are moving on for you & the futures looking brighter. Well done with giving up smoking,it has to be better for you in the long run. Happy Easter & I hope you have a really lovely lunch & day with your daughter & grandsons. Take care x

in reply to Caza

Thank you caza , i'm staying positive just hope it works. I'm really looking forward to going to my daughters, I havent been out for ages feeling like the 4 walls are moving in on me lol. Be good to look at someone elses 4 walls lol. But you know what i mean when you cant do anything and you can only sit and rest it becomes mundane and i start to think about the illness and what life holds for me. So a change will be good to lifts my spirits and actually see life outside of mine.Be nice to see my grandsons and my daughter. have a lovely easter break enjoy x take care :) x lena

allanah profile image
allanah

Really great news, I got my Humira but since then got a chest infection, abscess on the bum, and now diarrhoea lol no, don't imagine it !,,,, so can't take the drug but Rheumies seeing me after Easter instead of June so again great support. Well done on stopping smoking , keep taking the nicotine replacement. Happy Easter xx

in reply to allanah

hi Allanah, so sorry to hear your not well , hope they sort it out for you after easter, i am feeling positive towards the meds at moment so hoping they work for me as on no medication at present so its not been treated due to severe side effects of dmards urggggg!! But i'm hopeful, had two falls recently due to very painful colapsing knee and landed on my hands so have been in severe pain recently but i think my steroid injection i had last week is kicking in as alot less painful in my hands and wrist but knee still sore but not as bad , So yes i am very excited. I'm happy i gave up smoking been cutting sown for some time still using patches on the 14mg at mo but determind to kick the habbit. I have been treating myself to new clothing and more comfortable shoes on line with the money saved . thank you for your kind words hope you get back on your meds soon and feel better soft hugs lena :) xx

sarah1967 profile image
sarah1967

Hi, i had my first enbrel injection monday gone. its was like a miracale cure, i have had some side affects tiredness, sickness, on the toilet but compared to RA , no pain i can live with that am hoping my body gets use to it and the side effects disappear in time. I had read on this site so many positive things about it but never in a million years expected it to work and work so well.the pain from RA is enormous it dominates your life stops you from living it !!!

I had a long journey to get here but its like i never had the diaseases my only hope it stays this way as its early days yet.

I wish you all the lucky in the world and hope it goes as well as it did for me GOODLUCK and best wishes. Do let me know how you get on.

sarah

X

in reply to sarah1967

hi Sarah what a positive reply so glad it works for you and hope it continues. Hope it works for me looking forward to getting started. Yes i agree RA takes over your life if you let it , but determind to accept it and adjust my life so i can get on with my life and enjoy it too the max as much as possible. I will let you know how i get on, and let me know how you are getting on as you proceed. Best wishes and warm hugs lena :) xx

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