Hello to all, hoping everyone could enjoy a little autumn sunshine ☀️
This is a long express myself so I will cut to the chase here - I keep reading people asking about just stopping their medication- just DON’T!!
I like some, don’t have anyone to share my thoughts or battle with. For some reason I have to offload somewhere and here I am.
So I could just go to bed and tomorrow is another day but today I was reminded that RA is a beast, a beast that likes to show its dominance and remind you who’s actually in charge.
I’ve been unwell with a flu/cold type illness for 3 weeks now with an unforgiving cough. After 5 million tests I don’t have Covid but did need a course of antibiotics. My dr instructed me to stop my meds (Rinvoq) for 7 days .
All ok until Friday when the beast came back to say hello. Today the beast made me cry when I returned from the beach with my little dog. I cried because it was a beautiful day and I only lasted 50 mins of struggling with slight hills and basic walking and for every second I was there I wished I was that person that effortlessly enjoyed the sunshine and over took me with a spring in their step. I wished I was like a normal 46 year old and the person I was 2.5 years ago.
I am back on Rinvoq but will have to hang in there until it kicks in again (hopefully), it was clearly working far better than I thought so I consider myself lucky with that but wow I hurt in many limbs/joints . The fatigue in particular is draining!
Honestly if people really saw the courage needed in our situation(s) they would reconsider giving the likes of Richard Branson knighthoods!
Tomorrow is indeed another day - thank you for reading if you did 😀
Aww, I'm sorry to hear that you're struggling Mcmayo. I hope you don't have to wait too long for the Rinvoq to kick in again. 🤞 RA is such a bitch! All the best. x
So awful when you've done as requested & bang, it hits you like a sledgehammer. I so agree with you about the posts thinking about stopping their meds &, yes, if they do they will indeed find out that they were doing something even if they think they feel worse on them, unmedicated rampant RD is 9 times out of 10 far worse. Been there (not of my own volition) & never wish to be there again… or wish it on anyone else. Truly.
Please do try to get out in the fresh air, even if it's only down the road with your little pal. It will make a difference getting out in the fresh air. It's supposed to be a little warmer for a few days so that may make it a little less of an effort with respiratory problems on top.
Take good care of yourself, I hope those antibiotics do their job quickly & for good.
I feel you and hope your meds soon kick back in and you feel better in yourself. Well done for 50 mins I think that is very good. Yes it does come and bite us on the nose and let's us know it's there. Tomorrow is another day and I do hope its a better one for you xx
Lovely homely post I completely related to !!! I too have two dogs don’t live far from the beach . I have to push myself to walk my poodles and all my legs back and feet scream at me too . I understand how you feel. I hope you get over your bad cold or virus soon 😊 🐩 🐩
Firstly what a beautiful photo! I don't have any pearls of wisdom but wanted to offer you a warm and gentle of a breeze hug. RD is a hard slog that people truly don't understand how it feels as we try so hard and put a lot of effort into keeping going. A friend of mine who now has RD said the did not understand or appreciate what I went through each day until she was diagnosed and wanted to apologise. Anyway take care and glad you felt able to share this with us, be kind to yourself and take each day as it comes, warm wishes xx
I was taken off Olumiant for my chest cough and within 5 days the RA crawled back to remind me how bad it can be. Back on OLumiant and praying after a week and pain getting worse it kicks in soon but could be a few more weeks. Yes, I have cried too re being 56 and seeing life go by me as I walk like a very old person up a slight hill etc xx
I have to come off my biologic again for 12 weeks or so for cancer treatment. I had to do the same earlier this year and RA started to bite back within four weeks even though I rested a lot more and scaled back the walking. But I knew and strongly believed that I will get better again within a few weeks, slowly but gradually and I did. The same will happen again this time round I'm sure. I hope it will be the same for you. All the best.
Totally get what you're expressing RD is such an insidious condition.At times to help with my mental state I take antidepressants never need to for depression till RD.
My OH is good at reminding me of what I no longer can do/be which isn't helpful. 🙄
Whereas I desperately try to commend what I can do getting up is one of them lol.
Was in such a state pain wise (till steroid injection Monday) was in despair, felt worthless all vile eh?
Coming here is balm in I see so many of us battling with getting through what others don't even think about. Worse thing is have friends abroad (she had couple of conditions relapsing polychondritis & behcet syndrome ) they switched to a plant based diet & she's cured! So they kept nagging via messages, emails etc for me to switch to the diet too. Seriously imagine me stopping my meds to try this?!!
Hi, I think you are brilliant to have walked for that long, It's harder walking on sand too, At least you managed a walk with your lovely pug and that's the main thing for you to be able to get out in the fresh air. I have 3 little pugs, I would love to walk my little dogs, But unfortunately Paddy the naughty one pulled me over and i have multiple fractures and broken bones in my wrists and hands, But I'm getting there. It looks like a lovely place where you walk too. Hope you feel better soon. xx
Oh no that is rubbish so sorry this happened to you! Thank you for your encouragement, the 50 mins felt so hard I think that’s what made me cry. Wishing you well x
Waw! that's so well expressed Mcmayo. There is so much people without RA can't realise (not their fault), but I know exactly how you feel seeing other bounding around & that not long ago you were like them. I certainly appreciate the drugs that work (as they did most of the time for 20 years) because this year I've gone downhill dramatically so much as not been on a drug that works for 10 months. Truly hope you get back on the meds soon and rebound quickly. It's still very much worth us venturing out if we can in the fresh air, even if so restricted. Take Care X
Thank you, this is the first drug that seemed to make a difference & then I became unwell in another way 😞 it just seems like such an on going battle so I do hope you get some relief soon! Take care x
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Rinvoq (upadacitinib)
I have no idea what I have done.......................
Here I am again
Well it’s finally got me !! Covid strikes again. 
