Do others find this?
When your body is struggling with inflammatory RA and you are doing your best to get on with it and be ok, you almost convince yourself it is fine. Then you take a medication that gives you back a close to normal body, at least for a while, and it suddenly occurs to you just how awful you were feeling, just how much you were putting up with?
I’m not as badly or widely affected as many on here, yet... well.
Hope your Sunday is warm and wonderful
Definitely. It's only now that my medication is starting to really work that I realise how much I'd become used to everyday stiffness and soreness. I suddenly realise that I've done something without thinking and it hasn't hurt! 🤗
Yes yes yes.
I’m not as bad as some but if it’s a good day and I manage to clean the bathroom for example I’m delighted and suddenly realise I’ve been too bad to clean it for weeks. Then I remember that would only have been a little chore in a very busy day🥺so even a good day is restricted
I agree totally!
I hadn’t realised how much I had been suffering when I had to wait an extra 3 months to get my Rituximab infusion because of lockdown.
Oh yes. But it was a general steroid injection that gave me a taste of me pre RD. It worked for one day, but it shocked me to realise that while I thought I was quite well controlled, it wasn't good enough. Never been there since but would love to feel that way again with the right combination of meds. A pipe dream I know!
🥺
That feeling is priceless xx
Yup. Steroids, either injection or have the only thing that gives me a hint of normality. Tapering now !!!!
You can once you find the right medicines. Work closely with your rheumy and your physiotherapist to slowly improve from there.
Remember, don’t give up!
I love you Amy. I love your positivity too. It's 12 years since diagnosis! 4 DMARDs & still on MTX 11 years on. Biologics elude me I’m afraid. MTX works reasonably well & my side effects aren’t severe or problematic enough for me. This & because I'm generally well controlled is why I remain on low dose steroids. I'm unable to closely with my Rheumy as she left fo a reduced position in another hospital & I’ve yet to meet her replacement. I've been seen by 2 registrars in that time & once seen the nurse as I don't really need to see her, I’d rather others who really need them took appointments. On a positive note, I have this last month had xrays on my hands & feet, the first in 7 years & since the results of those a telephone appointment previously book for January has been changed to an in clinic appointment. I'll keep you posted. 😘
After so many years, you still need the steroid, which is not very good as long term use of steroid will be harmful to our body.
I am very sorry to know that you are unable to see your rheumy for sometimes already and I am glad that your condition is still controllable. Since MTX is working for you, if you do not mind, may I know what your dosage is then?
Well, I do include dairy in my diet & take twice daily calcium & Vitamin D tablet. I also have a DEXA scan every 2 years so an eye is being kept on my bone density. The scans show I do have osteopenia/borderline osteoporosis but this had been so for at least 8 years & my fracture risk isn’t getting worse, in fact is better over the last 4 years. The steroid dose is very low but I understand your concern.
I take 17.5% MTX by injection. Unfortunately anything higher & side effects start to be a problem & it can affect my liver values. Unfortunately many are in the same position, not seeing their Rheumy as often as we should, but I’m sure if it was really necessary, if we were having problems, we would be.
When mtx was increased to 20 mg, my liver was bad too. But at that time, my RA already under good control hence my rheumy decided to reduce it slowly. My liver was back to normal after that.
I had done the bone density scan few years back, I do have osteopenia on the right of my pelvic. Not sure if my rheumy will schedule another scan after so many years.
From our exchange, I can see that the treatment process is slightly different. Most importantly, our RA can be in control will be okay to me.
Absolutely
It’s nice to read positive stories 🤞🏻
Hear hear. I hope your Sunday is warm and wonderful too Brushwork, thanks. xx
Totally agree Brushwork xx
Yes , I worry about going back to it x
I do. I think many of us do but try push it to the back of our minds. xx
Some days I could run a marathon (slight joke) and other days I just want to go to sleep and never wake up it’s not the pain it’s the loss of energy fatigue it really knocks me for 10 . But I am about 70% now so can’t complain stay safe xx
Yep, I completely agree too. Like a massive weight has suddenly been lifted (until it comes back)! 😳
You are absolutely right. I know that feeling very well.
I’m still waiting lol. I have had very short periods of almost normality but sadly in my case that seems like a million years ago 🙄. Hopefully good news though 🤞going to sort a long awaited new treatment out 10th December as I haven’t had a good year at all currently pants haha. Still smiling don’t know how must be the fact that I must be a bit nuts that keeps me going always a glass half full though, now where’s those painkillers 😂😂. Nice to read a positive post though.
😂😂😂are you talking about me or are we twins 👯♀️😂😂summed up my year... still waiting for new meds🙄
Probably there’s a lot of us that have had a really tough year with our R.A. I haven’t had any treatment for crushing Pain and inflammation for nearly a year so I got shirty and begged for an appointment with consultant. Dunno if I’m going to get to see him or Biologics nurse and to be honest I don’t care if I see the clinics cat as long as I get some help lol. I know it’s not been easy for you either judging by your posts that I try and keep up with. Fingers crossed for a better year for all in 2021 I think I will then write this one off lol. So yeah twins in that we appear to be in the same boat. Being clinically extremely vulnerable doesn’t mean it’s not possible to beg and get some help even if you have to wait a while and be desperate and of course completely nuts 🥜.
Being nuts is an obligatory qualification for Ra otherwise it doesn’t bare thinking about... shocking so many have and continue to be left to suffer... as I said to my nurse I was here before Covid 😁I’m no longer being polite and just waiting... I’m now a Rottweiler.. totally new person.. I quite like the new me 😂😂
"How you feeling today Monica?"
Just when you thought it was safe....
Pregnancy and having children when you have RA...advice please!
