I'm symptom free, thank you Humira

[TerrilouiseS]

Hi all, I'm symptom free, it's taken almost three years and I want to share how amazing it is because I believe positivity in other ppl's posts was the biggest help when I was in the darkest place with pain. I hope my words help one person in their time of need. Because there really is light at the end of the horrible tunnel of Inflammatory Arthritis and I feel so much gratitude!

This disease crippled me, literally I couldn't walk, I stopped exercising for two years. I used disability aids for eating, using pens, texting, wore wrist and ankle supports, lost hair, the list goes on. It takes so much away from us (my 'it' is now Psoriatic Arthritis).

I started Humira 4 months ago, before that I believed that this was the golden ticket, the answer to everything. And boy I was right.

The waiting for Humira to be delivered was like anticipating my life arriving again in a box. I remember saying I know Humira will work, everyone at the biologics clinic looked so......well, so normal. I injected Humira on Mother's Day in the morning and within two hours I was walking more normally, I wanted to cry with joy. By the end of the day I had my feet flat on the floor walking something I haven't done for years. It was beyond anything I could hope for. I was mobile again. The next morning felt like Christmas morning. I couldn't wait to leap out of bed and try out my new body 😂 Each hour that passed in that first week I felt the pain melting away. It was only when pain started going that I realised how much everywhere had hurt!

The brain fog lifted, the fatigue melted away, I was becoming me again!

Amazing moments that happened in the first few weeks:

Waking up and actually feeling like getting out of bed 🛌

Feeling the texture of floors, I forgot how great carpet, silky rugs, wood floors, GRASS feel minus pain.

Being able to have a conversation without the background 'noise' of pain.

Eating with regular cutlery

Eating without pain

Ability to exercise again (I got a road bike and I cycle to work)

Energy

Confidence

My sex life 👏🏼

I can honestly say that even today as I went through London on the tube and watched everyone rush I felt so unbelieveably happy and blessed to just be there, pain free, mobile and in HEELS. I wondered if the rushers know how blessed they are. I know I am.

Yes I have had moments where the disease beat me, I wanted to switch the pain off. I couldn't go on anymore if I had to live like this. I couldn't see the future beaches a future of pain and fatigue wasn't a future for me at all. Humira has given me my life back and I intend to live it!💃🏼

I really hope all of our newcomers find treatment that works for them and get there life back ASAP and I hope all the veterans of NRAS forums know how much they help everyone ❤️

Life really is a wonder to me right now, how I took it for granted before. I really won't be again!

Gentle hugs

T xx

PS I learnt to surf in cornwall this weekend #bucketlist #arthritiswhatarthritis

[Cathy777]

Wow! Good to hear that! I have just started on rituximab biologic but wonder if I should have asked for humira. To get such quick result amazes me. I am told my drug can take 3 months to kick in. If this doesn't work at least I know my next plan! Thanks for your post and enjoy your new found freedom!

Cathy - London

[Victoria-NRAS Partner Moderator NRAS in reply to Cathy777]

Hi Cathy

Responses to drugs are very individual, and there's no way of knowing in advance which biologic would suit your best. Hopefully you will get these kinds of dramatic results on the rituximab.

Victoria

[Cathy777 in reply to Victoria-NRAS]

Thanks Victoria

I understand. I might be lucky too.

Cathy

[TerrilouiseS in reply to Cathy777]

Hi Cathy, thanks very much. Really good luck with Rituximab! Humira also takes up to 3 months and I still had symptoms lesson as the three months went on like joint swelling went down much later. It was absolute fortune that this one started to work almost immediately. I'm not the only one this has happened to. I was originally diagnosed with seronegative rheumatoid arthritis hence my use of NRAS and just got firm diagnosis of psoriatic arthritis before starting Humira. Because they think I actually have Psoriatic Humira is the best option for that. From what I gather different biologics help with different types of inflammatory arthritis so you may have certain ones recommended based on that. Apologies if my posting on NRAS makes that confusing. I turned to NRAS for previous diagnosis and knowledge transfers over to so many autoimmune conditions xx

[nomoreheels]

Thank you for writing such a positive post Terrilouise. Long may your new version of life & living it continue. x

[TerrilouiseS in reply to nomoreheels]

Thank you nomoreheels you are particularly one of the people that helped me through dark days. Gentle hugs xx

[nomoreheels in reply to TerrilouiseS]

Aw, well that's one of the reasons we're here! x

[PFKAAde]

Great to hear.

I have had similar results from Humira but....tell me more....about...the....sex life bit.😚😄

JOKE!

Seriously though it does show that there can be (great) life after diagnosis. Even when all seems lost, there is always hope.

Although I still haven't gone back to the high heels. 👠 Not my thing really.

It took about 7 years for me (before I went on Humira), I had similar results from Infliximab (Remicade), but ended up developing antibodies to the mouse protein in it and having reactions.

It has never completely removed the inflammation for me, my wrists still hurt a little and are a little inflamed, I still can't manage on the amount of sleep I used to, I still have days where I just can't - but compared to the low point - waking up at 3am in a soaking wet bed (from night-sweats) and being desperate for a drink, finally getting to the kitchen 2 hours later on my back, pushing myself with my feet and not being able to open a bottle or turn the tap on, it's a million times better.

Although I'm not on any other meds (for RA). Do you still take MTX?

Anyway, great to hear - long may it last.

Onto the next thing on the bucket list...

Ade

[Cathy777 in reply to PFKAAde]

Oh Ade

You made me smile. I am glad things are not as bad as they were. But still not quite as life changing as that lucky lady! I travel through London on the tube like her but won't be tempted to trip her up! How dare she be so happy! But it does give us hope.

Cathy

[PFKAAde in reply to Cathy777]

😀

I'm glad I made you smile (psst - don't tell my wife what I said).

It has been pretty life changing to be honest, I was a mess before biologics gave me most of my life back.

Before my back took most of it away again - for a while.

But, onwards and upwards, just got back from the gym, going out for a meal tonight (as long as my wife doesn't find out what I said😬).

No surfing just yet though.

And definitely no high heels. 👠

Take care.

X

[Cathy777 in reply to PFKAAde]

Oh I didn't realise you were male! Now I am laughing all the more! I won't say anything to the wife. Enjoy the meal. Those heels would look so good on you tho........

[PFKAAde in reply to Cathy777]

💅👄💄👗👠👡👢 shhh!

😉

[TerrilouiseS in reply to PFKAAde]

Lol re the sex life. For me it was something that seems so overlooked by the medical profession but an essential part of life so of course it's affected!

They asked me to also take MTX with Humira as apparently it makes the absorption better. I was up to 22.5mg and it did nothing, rheumy said that wasn't going to increase given my size I probably wouldn't tolerate anymore. I've decided against taking it as it makes me feel awful and I'm a 29 year old woman who wants to have a baby. Another thing the sex life is important for lol.

I was also prescribed the usual sulpha, steroids, any pain killer I want. I don't take anything else now not even an Ibruprofen.

Sorry to hear you still have some uncontrolled swelling, I hope you don't have to repeat kitchen floor antics, burglars coming to your house would get a shock!!

The heels 😂😂😂😂😂

[PFKAAde in reply to TerrilouiseS]

Ha - yes integral to the (usual) process of having babies, so I'm led to believe. 😊

I had to come off MTX as it made me puke. Literally.

I also had to come off everything when we (well, my wife) had babies. Maybe the advice has changed now though?

And the other DMARDS either did nothing or made me pay A & E a visit as I felt so bad.

So Humira it is. I have also recently stopped taking NSAIDs so my wrists obviously aren't that bad.

The kitchen floor thing was 15 years ago now, thankfully that was the worst flare I have ever had.

Good luck with the baby thing. 😉

Ade

👠

[TerrilouiseS in reply to PFKAAde]

Doc said Humira ok for babies hurrah can't have that affected as well.

Well done on making us laugh Ade 👠💅🏼

All the best x

[Victoria-NRAS Partner Moderator NRAS]

What a lovely, positive story and congratulations. I hope you continue to do as well or better and thank you for taking the time to share this.

Victoria

(NRAS)

[Hidden]

Oh thank you so much for posting this. You give me hope that I too can have a painfree future.

I am going to copy this post and place it on my fridge.

thankyou again, may your painfree freedom last!!!

[TerrilouiseS in reply to Hidden]

Thank you suzannedale I think you and I have had symptoms almost as long as each other. One of your replies to me last year about ra being a piece of dog poop on your shoe really helped me more than you know. I'm happy I could give you something in return 👍

I look forward to the day when I read about your remission drug induced or not

Terri xx

[Hidden in reply to TerrilouiseS]

Yes, I remember writing about ra being dog poop on my shoe!! I am so glad that helped you . I still think of RA that way. But it's still on my shoe today.

I have your picture and post on my fridge now. My daughter asked me,

"who's that?"

I replied, " A friend who is giving me hope for a painfree tomorrow"

My daughter thinks it's weird to have a photo of a stranger from the UK on our fridge. lol. I guess I never thought of it that way.

All the best to you Terri,

Sue

[TerrilouiseS in reply to Hidden]

What's very strange about it is how people we don't know give us so much comfort. And a stranger is only a friend you haven't met yet 😊 What's even stranger is I had your post as my screensaver for months. Take care xx

[Beaches2]

What a fantastic post! I was just the same as you in my early days, reading and re reading all the positive posts I could find and so grateful to those who stick around and tell us about them. I too am now getting on with my life thanks to abatacept. I dread to think how things would have been for me without these drugs.

I know for sure your post will help lift the spirits of all those still struggling on here.

Good luck to you and thanks for posing.

[Mosartnme1]

Congratulations! Terrilouise,

I am so chuffed you have been reborn. I was not lucky enough for Humira to work for me. But I am positive there is at least one medication that can work for us. It's just finding that right one! We just need to keep on going on and never give up. May your wonderful miracle continue long into the future.

Keep on surfing and God Bless 🙏🏻 🌹

My regards,

Mosartnme1 xx

[TerrilouiseS in reply to Mosartnme1]

Thanks very much! Yes there is something out there for you, lots of people find it MTX. I hope you have a pain free life v.soon

❤️

[helixhelix]

Truly wonderful! Especially the surfing, and the heels - and who knows, maybe not that long before you can do both at the same time?

I wish we could share that feeling of the day when things suddenly start to improve. I remember dropping something on the floor, and just bending down to pick it up without a thought. And then yelping with excitement when I realised what I'd done! And with no pain. It is just magic, so v happy that it's worked for you.

[TerrilouiseS in reply to helixhelix]

Amazing story, definitely relate it's like seeing everything through new eyes!

Surfing and heels now there's a challenge 🏄🏼

You are one of those ppl that posts about remission and gave me hope. Thankyou!!

[net2012]

I am on Humira too, coming up to 2 years and working for me. It is so good coming out of that dark shadow ie getting a twinge and wondering what it will lead to, in some cases I had to crawl. Life is so good and am pleased for you x

[TerrilouiseS in reply to net2012]

Yay Humira crew!! So pleased for you, 2 yrs wow how amazing. The crawling, 😩 yes I remember it well! Once when I was crawling my baby cousin who had just learnt to walk thought I was hilarious for crawling around lol what a ray of sunshine he is ☀️☀️☀️☀️☀️

Here's to is never needing to crawl again💪🏽

[Twinks80]

I absolutely love this post and so happy for you!!! Right now, I'm fighting to find something that will work to take my RA pain. I pray, that like you, I can find it.

Love and light ❤️ Teresa

[TerrilouiseS in reply to Twinks80]

I really hope so too Teresa, I have faith you will find the right medication for you!! Thank you 🙏🏼

Best wishes

Terri xx

[thelmar]

So glad you have found the right drug for you and you can resume a 'normal' life. Lovely to read such a positive story.

My Rheumatologist is undertaking a research programme whereby a biopsy is done which will indicate which biologic will most suit a patient. We must hope that this is soon available to save us having to try several drugs before finding the best one. Imagine a day when all the posts on here are positive ones!!! 😌

[minka]

wow real good glad for you

can you tell me where all your aches and pains where like walking over to other leg back pain ringing ears etc then i cna ask my rumi to try this

[TerrilouiseS in reply to minka]

Hi Minka thank you. I had pain in hand joints, hips, knees, elbows, shoulders. The worst area was my feet. I had several swollen red joints in the sides of my feet, my toes and I had Achilles tendinitis on one side. Because of that symptom I was put on Humira because it's quite common in Psoriatic Arthritis (but I guess you can get it in any). Each biologic is chosen for the individual's symptoms so I hope you get the right one for you xx

[stbernhard]

What a wonderful wonderful world.... It makes my heart sing with joy to read the happy outcome posts. I am so happy for you. I still take a few minutes every day to focus on how positive thinking and acting can help to live well with RA. After two years in remission. Well done you.

[TerrilouiseS in reply to stbernhard]

Two years! Wow!xx

[Crusee]

What a great piece of news.

It's really good to hear that there is light at the end of the tunnel.I am so pleased for you.

You now have a lot of catching up to do and it sounds like you have already made a good start.

Keep it up.

Crusee

XX

[wiliby]

Love love love this post!!!!! 💕

Long story short, similar to you, lost mobility, started enbrel and got my life back (for almost 4 years but stopped working until recent change I'm getting there!) But yes the simple joys of sand between bare toes, soft carpets, walking round the supermarket, HEELS!!!!, peeling apples, dancing, playing on the floor (with my young daughter), exercising, cycling...... as you say appreciating life like never before 😁

Delighted for you and a lovely picture x

[Lomo1964]

Hi. I am inspired by your story. I am in the process of being diagnosed with RA. Haven't been given any mess yet and still been delayed as my liver count has gone back up so going to see a liver specialist to be on the safe side although I had a ultra sound scan which showed my liver to be ok but found a very small gallbladder stone. So no drugs until seen liver specialist. If the drug you are on is that good why isn't it prescribed to everyone. Did you try other mess that didn't work? I am new to all this and really afraid for the future so trying to get all the information I can X. You look amazing and really pleased you are feeling better xx

[TerrilouiseS in reply to Lomo1964]

Hi Lomo,

Being new to this world isn't easy. How long have you had symptoms for? Before I started Humira I had tried Sulphasalazine tablets and Methotrexate in pill form and then injections. I tried them to maximum doses and they did nothing. I have heard of both DMARDS working for people on this site though so don't feel discouraged. At your stage I didn't want to be on medication for the rest of my life but I really don't even notice now.

I really hope you get a resolution soon to your liver issues and get on something that controls your RA.

Take care xx

[Lomo1964]

Thank you. It's only been about 6 months so fairly recent. I have my liver specialist appointment tomorrow so hopefully things will get moving very soon x