Just got to keep going.....

[Metal-legs]

I've not been on here for a while as I've been so ill with pain and disability. Abatacept plus MTX was working great for me earlier on in the year. I had a throat infection for a short while, stopped meds for a couple of weeks. But in that time the RD just went mental and refused to be kicked back down, even with oodles of steroid injections. Spent the past 4 months so debilitated. May have to change drugs yet again (this is getting a yearly habit now) if the disease doesn't settle. Now been referred to a foot surgeon to complete my full surgery collection (had 2 hip/2 knee replacements, hand bits done) needing shoulder/elbow replacement, it is becoming a shopping list. Just got myself a mobility scooter because I refuse to let this RD have full control of my life and just got to keep on going.....somehow.

[Ali_H]

If it's any consolation Metal-legs I admire your resilience - a lesser person would be floored by all you've endured!!!

Ali

[Metal-legs in reply to Ali_H]

Thank you Ali, it just feels neverending and is testing me in every way.

[nomoreheels]

Sorry to hear you've been struggling so. I've just been told by my Rheumy nurse that unless I'm prone in bed on antibiotics it's not necessary to stop MTX, even on penicillin based ones. Not sure about that! Keep on keeping on, you've got some fight in you that's clear.

[Metal-legs in reply to nomoreheels]

Thank you for your encouraging message. This is something I want to discuss with the rheumy, do I have to stop the meds for sore throat, swollen glands? because this infection in Feb has caused the disease to throw a tantrum again.

[nomoreheels in reply to Metal-legs]

Best person to ask. Common sense would say yes, give your body a chance to fight it but always prudent to get it from the horses mouth so to say!

I wish you well & a that you have turnaround soon.

[Metal-legs in reply to nomoreheels]

Thank you nomoreheels. It's just so frustrating whenever I get an infection and stop meds the disease never seems to get back in control and I have to keep changing drugs. I will ask rheumy.

By the way how is your husband now?

[nomoreheels in reply to Metal-legs]

It must be, you have my sympathy & I hope your Rheumy has an answer for you.

H not so good. Got over the op well but not yet started rehabilitation, chest infection put him back. He's having further investigations/scans as he's getting a stabbing pain in the area around his heart & now his gallbladder's having a thrutch, been very poorly this last week. All meds stopped for 48 hours, only anti emetic, buscopan & codeine & having difficulty eating but has to as he's diabetic. Only saw his surgeon the previous Monday & decided between them that as it was lying low & he'd had enough of hospitals for now they'd defer the op. GP now writing to request he has the op as a matter of urgency, that it's not behaving & it needs doing "now". It never rains..... ! Thank you for remembering. Bet you're sorry you asked now lol.

[Metal-legs in reply to nomoreheels]

I'm really sorry to hear about your hubbys health, just when the op went so well, it sounds like it has been very challenging. It must be very difficult for you, I hope there can be some light somewhere on what must seem a neverending journey of setbacks. You have my full empathy.

[nomoreheels in reply to Metal-legs]

Aw thanks ML. You've so much going on yourself so my empathy is returned. x

[cathie]

Having had a similar experience from apparent remission to constant pain and lack of mobility you've all my sympathy. I find some help in distraction and a very amusing physio. And a wonderful partner who helps with my tears at breakfast!

Xxx

[Metal-legs in reply to cathie]

Distraction is definitely the key Cathie, sounds like you have found some good ways to cope. I think I am just so tired of it all after 15 years of aggressive disease and not much remission in that time.

[cathie]

I agree it is wearing. I have a friend who has had chronic depression for most of her adult life. She says to identify something to get you through the next hour, then the next etc. Hope helps,, but the medics can be so insensitive and I find that can be the worst of things. XX