Got my Rheumy appointment today. As I am 'in remission' I go once a year. This time though I am armed with the NRAS 10 Healthcare Essentials and will ask what my DAS score is, request a blood test and ask advice about exercise (difficult with sore feet and hands).

Also, having read the foot care article on here will be asking to see a podiatrist.

Don't know why, I get anxious when seeing the consultant and tend to forget everything or dismiss my problems rather than discuss but I am also armed with a crib sheet this time.



Angie

I start off well by keeping a diary but then forget. I am normally miraculously devoid of any pain at my appointments but so far this morning have my normal hands, knees and a bumpsy daisy pains.

When I read on the forum what other RAers are going through I sometimes feel a bit of a fraud with mine and then lucky that mine is under good control.

Will practise my assertiveness and hopefully 'man up' at my appointment.

Actually I do two things.

1. Keep a symptoms diary (in Excel with some funky graphs to plot pain versus effort)
2. Create a crib sheet of points to discuss, just before the appointment.

And then, of course, I have to remember to take them with me. It's not unknown for to forget - darn medications

Angie

That is wonderful news and long may your remission continue.

Hope you have a lovely Christmas

Lisa x

I think it's because my pain is mild in comparison with people with very active RA Gogs. I have very little restriction in movement and my stiffness reduces when I move around. Although in remission I still have general joint pain and occasional flares.


I'm wearing my orthotics again which supposedly will help my toes but I suspect that is not true as my toes still have to bend when I walk. They also jab at me when I am seated. Mind you, I can feel the arch support of the orthotics which is rather nice - just hope they don't cause callouses again.


I am very lucky in that my RA was diagnosed quickly and my medication was right first time so I don't have any joint deterioration that I am aware of.


Wish everybody was as lucky as I have been so far.

Angie

hi Angie,

great news your in remission although suffering with some pain.

i've been in remission or clinical remission as they call it a good 18 months now i should think, having started Humira August 2011 which has been my magic potion.

it means i have a good DAS Score, CRP and ESR are low, but they can fluctuate, but i was told not to concentrate on the numbers more on how i feel.

my pain isn't bad, the worst pain i have is my left wrist ( which is swollen ) and if i turn quickly or not right is painful and my knee's but they are shot to piece's with Osteo and probably have RA in them now. but when i am sitting or lying down i feel no pain from them.

my worst problem is fatigue, but my Consultant knows that i'm not a good sleeper so we take this into consideration when i answer on a scale of 1-100 in my DAS Score.

hope this helps Gogs,

Suzanne

so the above is what make's me in remission.

Steroids will certainly disturb your sleep patterns - what dose are you on Gogs?

I am currently on 17mg and I just accept that some time between noon and 3pm I will need to crash out for a couple of hours. I have even gone back to be at 10:30 having only got up an hour beforehand.

But fatigue has many other causes - the active disease, the anti-inflammatories, pain relief, DMARDs, anti-TNFs, depression - these can all contribute. Great huh?

Hi Paul,

I take 10mg daily orally and have done for the past year. Recently though I've been having IM injections of 120mg a time.
It's only since I started on those. I'm thinking even the pain is better than such a loss of sleep. I wake up between 2-3a.m every night,
I've been doing this since October.

By evening I can't wait to get to bed I'm so tired, I fall asleep instantly only to awake in the early hours of the morning, and then I
can't get back to sleep again. Hopefully by the end of January the drug should have worn off, sadly the other drugs wont have had time to kick in
but I'm prepared to put up with shuffling on my bottom again to get around the house because I cannot walk, plus very swollen fingers and hands.

Gogs

So 10 mg prednisolone. You are taking that in the morning, yes, to minimise sleep disruption? At 10mg sleep disruption should be minimal, although everybody's reaction to drugs differs. The 120mg IM jab is a likely suspect. Does it give you much relief? From what you have said, perhaps not much, in which case you might be right to question continuing with them.

Amitryptiline will certainly help with sleep, as a side effect. I am currently on 75 mg and am constantly tired. The thing about amitryptiline is that in high enough doses it will give relief from some of the RA symptoms - at least it has for me.

Sounds like a chat with your GP might be in order?

Thanks Angie and Paul,

Your replies are always helpful

I will ask my GP about Amitriptyline when I next go and see him, and perhaps I wont have
any more high dose steroid injections if I can manage.

Be well both of you.

Gogs x