[Freya]

Hi guys
The flare that I'm currently experiencing is only my second in 10 years and the first was focussed on my platelets throwing a wobbly with a few sore joints (so very lucky, I know!)
This time however I've been totally floored by the pain in my joints and I what I'd like to know from you guys is how "normal" is it to be as stiff as a board on waking and then have the pain ease throughout the day? I'm finding that by the time I leave work I'm only experiencing about 20% of the pain and to be honest I think my colleagues believe me to be some kind of fraud the way I practically skip to my car!
I'm then finding that I'm wiping myself out by early evening catching up on all the chores I can't do in the mornings but reluctant to go to bed because the whole cycle will start again the next morning!
I've only been taking 400mg of Plaquenil for a month (in the evening as advised by Rheumy). Prior to that, my GP put me on 30mg of Prednisolone, tapering to 0 which brought immense relief and in the last couple of days I've decided to take 10mg of Pred to try to ease the pain.
Any thoughts or advise would be very much appreciated!

 

[Jirel]

I think you're very right to go back to the pred. When I was in a flare that caused my joints to ache, the pred gave me a lot of relief. I DO remember that the pain being first thing in the morning means something specific (I have a Mayo clinic arthritis book at home) but can't remember if its that its all autoimmune or a specific type of arthrithis, sorry.

 

[Maia]

I am also more stiff in the morning than sore... as I move around during the first 30-60 minutes after awakening the stiffness eases substantially. If the stiffness lasts more than 60 minutes then usually that indicates RA instead of SLE. My pain tends to gradually increase as the day wears on though - usually significantly raised by mid afternoon and often awful by the early evening hours. The fatigue also worsens as the day wears on...

 

[germanshepards]

I think I read somewhere (but don't quote me on this) morning stiffness is seen often in RA. My joint pain seems to get worse in the late afternoon especially when I'm active all day and by night time I'm shuffling around like a 90 year old. Everytime I took a little prednisone I noticed a relief right away. Have you ever been tested for anything else like RA?

 

[ALWIN]

Hi Freya

I can be stiff in the mornings, but i was a lot worse before Plaquenil started to help (10 months for me). could barely put feet on floor and could not bend neck / back.

Other pain is similar to Maia - worsens as the day goes on and if i overdo it (especially arms, shoulders, back). I can end up feeling exhausted too - all I can do is go to bed for a few hours, but that does help a lot.

I am at the mild end of the spectrum.

 

[Joandublin]

Hi Freya

Your post forced me to think about my 'normal' patterns and what is 'extra' normal for me.

Every morning for the past several months I am stiff as a board and shuffle around for about 30 minutes before I can do just about anything. I set my alarm at least 30 minutes before I need to do anything. As the day wears on the pain lessens substantially but the fatigue kicks in until I am wiped by the time I am coming home from work. At the moment thats pretty much the average day.

Some days the pain in some joints increases as the day goes on. This is particularly true when I am reducing prednisone. The most pains I experience are in my ankles, knees, wrists, neck/shoulders and fingers. I never really know in advance if this is going to happen though. I have come to refer to these as my 'pain days' (only because I am trying to figure out patterns!) but usually painkillers help except when I cant take them because I am driving my car home.

I certainly understand the frustration of that cycle you speak about. I am relucant to go to bed at times, especially if I dont feel much pain, because I know that the next morning starts the whole thing again. It's funny but every night when I go to bed I hope tomorrow will be different.

Hang in there! Hopefully this period wont last too long for you

Joan:rose:

 

[halfpintfl]

Hi Freya, I am very sore and stiff in the morning, then after an hour or so, I seem to be better. By after lunch I have to lie down to take a short nap, then get up to fix dinner, etc, and by the end of the day, I am exhausted. It's the same cycle every day.It will get alittle better when the Plaquinel kicks in, I would check with the Rheumy about the Plaquinel, it is usually given once in the a.m., and once in the p.m. be well

 

[Lily]

Hi Freya,

I find I am incredibly stiff and sore in the mornings and it improves a little but by late afternoon I've just about had it with fatigue and aches and pains. I do have the 'luxury' of having a midday rest because I am on disability, so maybe that's why it seems like I'm ok until early evening, who knows :hehe:

Doctors advise Plaquenil can be taken all at once or split throughout the day, it doesnt really matter . Your doc probably wanted you to take it all at night to minimise any tummy upset which is common in the first few weeks. It is not a fast acting med but a good one once it starts altering the acidity of your cells so they are not able to produce antibodies willy nilly. I hope it kicks in soon for you :foryou:

love
Lily

 

[Freya]

Many thanks to you all for your feedback, it's so interesting to hear your experiences and thoughts.
No I've never been tested for RA; it's a good point though as my maternal Grandmother is a sufferer. -Having said that, my maternal Great-Grandmother was diagnosed with SLE when she was 70…she's just turned 96!!

I've found it extraordinary how quickly my symptoms seem to change; this recent spate of pain-in-the-morning-mostly-gone-by-afternoon has been going on for a few weeks, (and I'm delighted that 10mg of Pred has helped the pain a lot over the weekend). Only 3 months ago I was waking in the night with such an intense pain in either a shoulder or sometimes a knee that I would feel sick. I ended up giving it a pain rating and keeping a detailed diary which pleased my Consultant no end so I'm continuing to write (when it doesn't hurt to) everything down.

Alwin- 10 months for the Plaquenil to work..wah!

I'll certainly split the dose am/pm though, thanks for the advise.