Back into rheumy next week

Waited for a month for this appointment as I have been without medication for a while now. Didn't react well to the plaquenil at all, but the rheumy suspected I wouldn't. Apparently thus is a meet with the nurse to go over what went wrong and discuss next tier of options, which has to go to a panel, so who knows how long that will take.

How do people cope in the meantime? Winter us the worst time of year for me, but it's also when I do most of my sAles for my business, work has been at a standstill as I've been too ill to keep up. Man, if I'm thus bad during the summer, winter without medication us going to be scary! Advice welcome (although before I get spammed about it, yes I take Vit D already.)

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  • Hi sorry you are flagging and worried about the winter and your business. I can well relate to this.

    I have RA and other multisystem stuff and am dreading winter too (I live in the far north of Scotland).

    I'm also off all my meds having failed to tolerate three DMARDs now over three years. The RA doesn't seem to have come back yet but plenty of other stuff is bothering me - especially the dry eyes and the Raynauds type stuff with burning and nerve pain and chills and pins and needles.

    I'm doing lots of voluntary stuff though and this is keeping the winter months quite busy. I'm not earning much as an artist though - but trying to focus on a new project which should be diverting over the winter months at least. Waiting to see a neurologist but have been told it may be six months so more winter excitement probably! Sorry no advice but lots of empathy!

    Twitchy

  • Just when I think it's not so bad, something smacks me and proves otherwise. I have messed the date up for appointment twice, even was holding the letter in my hand and STILL planned coverage for wrong day. I have showed up the day before or two hours ahead of time or the week after....it's frightening sometimes how borked my brain is. Can't even see my spelling mistakes anymore so that will make writing work interesting...

    I don't want a cure...just an improvement. Can't keep on like this, it's putting my ability to care for my son in jeopardy. Ugh.

  • Well you have loads of guts and wrote that inspiring garden blog so I am sure you'll find a way around obstacles that autoimmunity presents somehow. I have an old iphone and it has a diary which sends me noisy alerts before appointments etc - as long as I remember to put them in of course. I can do up to three alerts and usually do one a day before - one three hours before and one an hour before. Sometimes ten minutes before depending how far away it is!

    My right hand has been playing up a bit all day and my forefinger has gone stiff and sore so I think maybe I spoke too soon about the RA being in hiding but I'd swap RA for the blasted semi numb feet and nerve pain that wakes me in the night. Yes Ugh I agree. Good luck with everything.

  • Hi Silvergilt

    Hopefully you will get new treatment news at your Rheumy Appt next week!. Usually with this illness to stop flares and waiting for new tablets to start to work, steroids can be used either tablets or injections to improve symptoms. Short courses like this are less damaging. Has this been suggested for you?. It's horrible worrying about the winter that alone could make you flare!.

    Best of luckX

  • I have. I idea what the interim course of action will be. Steroids really didn't seem to do much when I had an injection, I didn't feel any different and they opted not to bother if that was the case. I am in mortal dread of being on a waiting list for ages to try something that MIGHT work -what do I do for the months before a decision?? -but I guess we will see when I get there

  • I can relate to the brain fog as I can merrily write things on calender - wrong day, time, month and now year as have next years calendar under current one. Each time I am utterly convinced I've done it right. I have to read things very carefully, several times telling myself to focus. Spelling is rubbish too. Not on any medication. Live in Wales - not known for it's sunny climate. Winters are difficult, even the "mild" one just gone. Raynards, aching joints blah blah. When having a good day I can convince myself the entire thing is in my mind and just normal ageing, but on a bad one......... I have stocked up on extra warm woollen socks, have knitted huge wollen jumper so can layer clothes under it. My sleep pattern is problem at the moment as am waking every two hours. Have tried herbal tablets - no good, am trying Melatonin tablets, but so far, also no help. Lots of family stress, but who hasn't? We plod on don't we. Best wishes for your appointment and gentle hugs. :)

  • After a major scramble this morning, I ended up being given an infusion of steroids right then and there since my knuckles were clearly in a state. I knew that but it's shirt if vindicating when a nurse drags a passing consultant in and things happen quickly as a result. I am now waiting for a screening for the next tier of medication and I guess I go in for steroid infusions in the interim. Will be keeping an eye both on my calcium and my calories for a while I think.

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