Hello hello : Hi all. Well it's been too long since I... - NRAS

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Hello hello

allanah profile image
57 Replies

Hi all. Well it's been too long since I posted and my life has changed so much.

This time 2cyears ago I was in a wheelchair and crutches, in pain, fed up and trying to keep doing normal things. I was medically retired from work and was coming to terms with that.

Then I started getting help from an endocrinologist. My weight had ballooned with immobility, high steroids and diabetes with insulin control. He and my rheumatologist worked together...yes...together... to come up with a plan. So I started weight management , no carbs, high protein basically diet, insulin and steroids got reduced. Started Tocizilimab infusions , came off hydrochlorquine ( apparently allergic!) Small note here guys this is individual plan from these doctors it must be medically carefully supervised!

Then as the weight and body chemistry changed they managed to get me off diabetic drugs (type 2) and reduce my steroids. Again all very controlled and over the last 18 months.

So I've gone from being in pain and immobile to having now got off all diabetic type 2 drugs, off high blood pressure drugs, reduced steroids, onto a successful biologic and have gone from 115kg in weight to at the moment 69kg. Still have more to go but see the docs again in October.

I'm writing this for many reasons. Those of you who know me will realise what a changed this is for me and I'm hoping it will give hope to those who felt like I did then. I've never been one to sit around so I did still go to my festivals and music gigs with support and that really helped me.

I feel there is light at the end of the tunnel now where before evety dsy was a slog to even get up or dressed.i can now swim and exercise, before even getting the cossie on was hard.

NRAS have been an amazing support to me all the way since day one of diagnosis in 2011 and I'm so grateful to them. I urge you to volunteer for them, it's hugely rewarding and you learn such a lot.

I hope this post gives you all some hope for the future if you are in the place I was.

And I'll check in more often now lol..been so busy with appointments lol.

Loads of love And hugs A xx

57 Replies
Izzyowl profile image
Izzyowl

So up lifting to hear your story Allanah. Thank you for sharing. It gives us such hope and positivity that things can turn around as they have done for you.

allanah profile image
allanah in reply to Izzyowl

Hi Izzy. How long are you into your journey? It's been to long since I posted but it's lovely to hear from people I haven't said Hi too !

Izzyowl profile image
Izzyowl in reply to allanah

Well my joints are doing really well. Started with RA last year and on the triple therapy. I've Just got some issues with my salivary glands at the mo which am due to have surgery on which may be RA related. But determined this time next year I will be back at work. We certainly are warriors aren't we !

Gnarli profile image
Gnarli

Thank you so much for sharing this. What a wonderful, uplifting, life affirming post. You sound so positive and joyous it does the heart good to read it. It's certainly a goal for us all to aim for and has brightened my day

J

allanah profile image
allanah in reply to Gnarli

Hiya Gnarli. How are you keeping?

Gnarli profile image
Gnarli in reply to allanah

Today, not great but I'll be better tomorrow. Thanks for asking

sylvi profile image
sylvi

It is good to some good news for a change and darling i am so proud of you .xxxx

allanah profile image
allanah in reply to sylvi

Hiya Sylvie. Doing very well! How's your pain level going?

sylvi profile image
sylvi in reply to allanah

Not good darling. My spine from top to bottom is riddled with arthritis and the pain is off the scales today. I have been out with hubby to stop me vegetating on my own.xxxx

allanah profile image
allanah in reply to sylvi

Aw sweetie. That's not do good. Wish there was something that could help x

sylvi profile image
sylvi in reply to allanah

It is what it is darling just something else to fight.xxx

oldtimer profile image
oldtimer

Thank you SO MUCH! It is so good to hear from people who have gone from such a bad place to a much better one. And congratulations to you as well for sticking at it and not giving up on yourself.

allanah profile image
allanah in reply to oldtimer

Hi ot. How are you doing. Ye I'm well pleased as how it's going. Hoping to keep away from flares for a while!

Hessie5 profile image
Hessie5

So nice to hear your story! Thank you

allanah profile image
allanah in reply to Hessie5

Hope you are well xxx

hatshepsut profile image
hatshepsut

Brilliant news......had been wondering where you were. So good to hear such positive news. Take care x

allanah profile image
allanah in reply to hatshepsut

I will hope you are good too?

hatshepsut profile image
hatshepsut in reply to allanah

After successive infections I am at last 10 weeks into abatacept. Think that this might be the one!!😊.....fingers crossed. Have managed to cope with the sale of my house, am moving to be nearer my daughter and grandchildren. Very much hope that this adventure will be a good move....taking a winter let to give me time to find the right place to live permanently.

Sad to leave all the memories of the last 40 years, but on the plus side I have always wanted to live by the sea!! To be nearer my grandchildren is another bonus.

Hope I can do as well as you......soooooo pleased for you. M x

stbernhard profile image
stbernhard

So lovely to hear that you've come through it all and are still so positive. It goes to show that with patients, iron will and good management what seemed impossible can be achieved. Did you enjoy buying lots of new clothes? You are a shining example.

allanah profile image
allanah in reply to stbernhard

I've gone from a 22 to a 16. But as they still want me to lose another 10kg I'm not buying too much but I will enjoy it when o do!

helixhelix profile image
helixhelix

Brilliant, brilliant and even more brilliant. I bet your family are over the moon. I love hearing good news like yours.

A quote from the queen of soul, Aretha Franklin...

"Who hasn't had a weight issue. If not the body, then certainly the big head...."

allanah profile image
allanah in reply to helixhelix

Hi P. Missed chatting with you all. Once I got that sepsis I took ages getting ovrrvut and that's when I took myself off to the doc and demanded more help...which I g it. You need to be disciplined even with the help but I'm getting there ... Hope you are well x

Gigi71 profile image
Gigi71

Hi Allanah. So good to hear from you and with amazing news, you have done so well. Was wondering why we haven't heard from you in a while.I am a firm believer in the type of diet you have been on, as it worked for me too, just a few other issues now I'm getting older and constant meds for 33 years. Please keep posting, as such a positive post is so helpful to us all. Wonderful and Hugs G X

allanah profile image
allanah in reply to Gigi71

Hiya G. I know I have been remiss but I got over sepsis then started into this so I had loads of appointments ....we know that story. Glad to hear from you x

keeta profile image
keeta

Well done lovely .proud of you xxkathy xx

allanah profile image
allanah in reply to keeta

Hi Kathy. Glad to hear from you too. Hope you are keeping well.

MandiS profile image
MandiS

Lovely news Allanah. thank you for sharing gives us hope that its not all doom and gloom. Stay well.

allanah profile image
allanah in reply to MandiS

Hiya Mahdi. I was in a state buy I was lucky and by volunteering for NRAS and a charity called Attitude is everything who help people with disabilities get to gigs and festivals I kept my mind active and positive. So now to lose another 10kg is my next challenge!

Most excellent! :-D

allanah profile image
allanah in reply to

Hi nettle. Most excellent adventure indeed x

Mmrr profile image
Mmrr

Thankyou for posting, I too am under the care if endocrinology and Rheumatology, so your post hit a special note. I hope you continue to keep well and look forward to your next post !

allanah profile image
allanah in reply to Mmrr

Hi. I hope it's helpful to you too xxx

nomoreheels profile image
nomoreheels

Lovely to hear your sound soooo upbeat E! I know you're never a Debbie downer, there to help where you can which I'm pretty sure must come from being a nurse, but really this does sound more you. Huge congratulations on the elimination of your diabetic meds, bp meds too & reduction in steroids but I'm sure the weight loss is the biggest change to

you personally, all have played their part & it's worked! Finger's crossed for the final leap, you'll be clothes shopping for Yorkshire soon!

I'm pleased you've found a biologic that works well for you too & been able to stop HCQ. I'm sure your post will give hope to many newcomers & those who are struggling, as well as us oldies who are just perfectly happy for you. x

allanah profile image
allanah in reply to nomoreheels

Thank nmh! It is good after so long putting up with RA. Coping eith the fibromas ok. Feet problematic but had radiotherapy on my hands and they are moving so much better...still do typos tho lol. Hope you are ok x

Barrister profile image
Barrister

Great to hear this Allanah.

Clemmie

allanah profile image
allanah in reply to Barrister

Hiya Clemmie. How are you just now x

Ruth12345 profile image
Ruth12345

Just wonderfull to read your post. It is so very good to read others positive journey. Well done you, im sure its been a long road. So looking forward to hear how you progress. Thank you ☺

allanah profile image
allanah in reply to Ruth12345

Thanks Ruth. Hoping it continues ....

crashdoll profile image
crashdoll

It’s awesome to hear your story of success. You’ve clearly worked hard, all credit to you. Hope you’re proud of yourself.

allanah profile image
allanah in reply to crashdoll

Still feels like i could wake up tomorrow and cut start up again...but here's hoping x

Lulu66 profile image
Lulu66

So pleased with you, long may it last, lovely to hear the positives, we need that sometimes when it just seems hopeless, so Thankyou x

allanah profile image
allanah in reply to Lulu66

Hey lulu. Yes I do feel positive. I'm generally a positive person but with the blood tests showing improvements that's a great incentive xx

Lulu66 profile image
Lulu66

ooops *for you

allanah profile image
allanah in reply to Lulu66

😉😊

Happygranny1958 profile image
Happygranny1958

Really pleased for you Allanah, you have achieved so much, well done and thanks for sharing. X

allanah profile image
allanah in reply to Happygranny1958

Hi HG....Hope you are keeping ok too ??

Mandalou profile image
Mandalou

Hi allanah,

Just amazingly wonderful to hear your updates. When someone disappears for a while it's easy to fear the worst and think their condition has deteriorated and they are in a bad place.

To hear that you have asked for help, got it, worked on yourself and have made such amazing positive strides forward is an absolute delight!

Am thrilled for you and hope you manage the next 10kg without too much difficulty!

Very best regards.

Mx

allanah profile image
allanah in reply to Mandalou

Hi M. No I'm alive and kicking lol. Just been making the best of it .getting out and about!

Someonesmother profile image
Someonesmother

So Pleased for you Allanah. Wow what a change, just amazing. You must be feeling so wonderful to be feeling like a new person. Keep it up it seems you have finally e the right combination.

allanah profile image
allanah in reply to Someonesmother

In the words of the song " at last"

tillyrose profile image
tillyrose

Hi allanah. can I ask you if you are on nhs or private as you seem to exist in a different world to me, my rheumatologist refuses to even give me any medication, he has no interest in what pain I am in, let alone working with another doctor, I feel so depressed at the moment and only get to see him every 6 months I am on the nhs by the way, hope you don't mind me asking.

allanah profile image
allanah in reply to tillyrose

I don't Holly. I am nhs. I have been SO lucky at James Cook Hospital Middlesbrough. They are very forward thinking and my consultant is SO caring and will try anything. He also TALKS TO you as a person. So yes I know I'm lucky. I do have a rarer form of RA so maybe that's why he took more interest but that being said it's taken 7 years to get controlled. So don't give up. Ps you can ask for another consultant or even change doctor. The problem with RA is it's so slow. You try a drug 6 month later another one ...you need patience and to be on good control in that time with painkillers or even steroids. Do you have a helpline or specialist nurse you can call. They can be helpful. If not the consultants secretaries can be good if you are in pain.

tillyrose profile image
tillyrose

Hi allanah,thanks for your reply,no I have never had a specialist nurse or a helpline and I have been attending the north Middlesex hospital in Edmonton London quite a lot of years now, I used to be on methotrexate which worked quite well but then went into remission for a couple of years,but now I am having really bad flare ups but the consultant just wont listen and refuses to give me anything and I am worried that every time I have one of these attacks its damaging more of my joints , he just tells me to take paracetamol which does not even touch the pain,but am really going to try to change hospitals although its hard to know where to go for the best,but very happy for you that you are feeling so much better

Smiler53 profile image
Smiler53

So pleased to read your update (just catching up on all the posts). Funnily enough I was only thinking if you the other day. Nice to see you back and hear how well you are doing - inspirational. X

janny55 profile image
janny55

Hi allanah

Reading this has given me hope thank you I’m only just starting my journey and already want to give up 🤷‍♀️ I was such an active person always running around doing this and doing that now I can hardly walk, I can only get going by about lunchtime( I use to be up at about 5.30) but reading your story I’m hoping there is light at the end of this very long dark tunnel. Thank you 😊

allanah profile image
allanah in reply to janny55

I was in that situation for nearly six years. Others are in control much quicker. Do make a relationship.eith the rheumy as you see them regularly and when you are sore or in pain do call them. Don't sit at home sore as they will think all is ok if they haven't heard from you !

Good luck at getting "the" combination and talk on here . They are great! Also NRAS are brilliant. I'm in this month's magazine for members talking about the helpline!

janny55 profile image
janny55 in reply to allanah

Thank you allanah 🤗 that’s the trouble with me I always stay silent about my pain, before all this flared up I hadn’t seen a doctor for 4 years!

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