Happy Update 🌝: It seems I have responded well to... - NRAS

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Happy Update 🌝

Damaged profile image
Damaged
β€’19 Replies

It seems I have responded well to cortisone injections in both shoulders and Xeljanz. For the first time in three years I am walking again. I am currently walking 5 miles a day minimum. I am still tired but getting it done. I quit smoking in May. So I am not sure if improvements are from drug or my body. I may need to go clean for a time and see.

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Damaged
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19 Replies
β€’

Great to hear! Pleased for you. :-D

popsmith1874 profile image
popsmith1874

Great news keep up the good workπŸ‘

Really pleased for you and well done on smoking ( I quit 18 months ago: before RA but never going back). Hope it continues for you x

GranAmie profile image
GranAmie

well done you for giving up cigs [i did too, before RA] and for being positive Hugs XX

ruth_p profile image
ruth_p

Yay! That’s great news! πŸ‘

helixhelix profile image
helixhelix

What an achievement! Well done. I managed to quit on my x hundredth attempt and have never looked back. So glad I did even tho' now I really can't understand why I ever started!

Jesnaskah profile image
Jesnaskah

Minimum 5 miles??... You go girl! So glad to read happy posts!!

May I ask you a question about xeljanz... Have you noticed it making your hair thicker? I know it's been used for regrowing hair as an off label use. I was hoping to get your experience. I've lost and continue to lose whatever hair I have left since last August when I started MTX. Even though I stopped the drug after 2 months, the hair loss never slowed down or stopped πŸ˜ͺ

Hobbits profile image
Hobbitsβ€’ in reply toJesnaskah

The hair loss will eventually slow down and stop. Mine hair took several years to get back to β€˜normal’ after stopping MTX. Meds can cause hairloss, but having the actual disease can also cause hairloss. I was in Enbrel and it worked brilliant, no hairloss...but each drug affects everyone different.

Damaged profile image
Damagedβ€’ in reply toJesnaskah

So sorry about the hair. It is so important to be happy πŸ˜ƒ with how you look πŸ‘€. I have very long hair and have grown out the bangs. This was done for economic reasons. It is far less maintenance cost .

I have only been on Xeljanz for five weeks. Hair has been good but not sure I would say thicker.

jomojo profile image
jomojo

Congratulation being pain free and stopping smoking. Wow 3 years unable to walk. I quit 12 months befor RA symptoms began. Best thing I ever did too. X I started methotrexate 5 days ago.. After a solid 12hrs sleep first night and felt like a zombie that day all good so far. Does everyone have hair loss? Mine is thin enough anyway so I hope not. Well done and long may your health improve. X

Damaged profile image
Damagedβ€’ in reply tojomojo

I never said pain free ⭐️ I wish . It is currently manageable. I have also had chronic pain for twenty years , you get good at ignoring it β€œmostly”. Like many , there are good days and days you look forward to forgetting ha ha

I am not certain if the improvement is due to lifestyle or drugs but will experiment . Do not want to mislead anyone. The pain is very intense but I choose to push past it. I will either trigger a crisis or develop some strength .

Hobbits profile image
Hobbitsβ€’ in reply tojomojo

Not everyone has hairloss. Some have no symptoms with Meth. They are the lucky ones. I was taking a combination of MTX and Arava.

I had a lot of hairloss, it broke off right below my ears, it was very long. I also had extreme memory loss. It was very hard emotionally on me.

It took two years to get my hair to start growing out again.

I think a lot of hair loss is an exception at least that’s what my doctor said.

I think everyone is different in how they react to any drug or combination of drugs.

Hobbits profile image
Hobbits

Wow! This is great news! So glad you are responding. Hmm hmmm 5 miles a day? Now that is quite an achievement! Yay!

hatshepsut profile image
hatshepsut

Great news! Wonderful that you have regained your feet,....hope you now go from strength to strength.

So well done on the smoking front. I gave up 14 years ago, and still remember how hard it was.

Here's to even more progress!!

Doughnut61 profile image
Doughnut61

Great to hear x enjoy 😘

ButterflySue profile image
ButterflySue

Great news & well done with the smoking!! I’m thinking of suggesting to Rheumatologist, when I see her, about changing to Xeljanz. Leflunamide seems to have stopped working, as I’ve been in a bad flare for a few months!!! .Thank God for steroids & cortisone injections!!! πŸ˜‰β˜ΊοΈ

Damaged profile image
Damagedβ€’ in reply toButterflySue

Remember that not all drugs work for all people. I went trough four other Biologics before Xeljanz. It is very expensive. I have two private plans that cover me on top of MSP. This is not the case for everyone. I also have made pretty radical lifestyle changes.

Hobbits profile image
Hobbits

I think Xjelganz is one of the new ones? And probably a more expensive option?

I wish I could take this one but it’s only for RA and Colitis, not Crohns.

Hobbledehoy profile image
Hobbledehoy

CONGRATULATIONS - I TAKE MY HAT OFF TO YOU!

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