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woz
02-14-2014, 01:44 PM
Hi fellow members, and a big thanks in advance to everyone who replies. I have been on a maintenance dose of azathiaprine (150mg daily), since july 2013, things have been good so far. I have noticed, in the last 2 months, that muscles and joints in my body are aching, mostly fingers, elbows, knees and ankles. Have had blood-work done twice, perfect both times, my reumy is scratching her head, maybe a azathiaprine problem, maybe wegs has something to do with it, maybe I am just getting old, any body have another conspiracy theory to add to this. Besides the aches and pain, I am as healthy as a horse, haven't even had a runny nose in the last 7 months.

Thanks Woz.

Pete
02-14-2014, 01:50 PM
Hey Woz,

What's your pred dosage? I was off altogether last summer when I had similar symptoms. Later in summer, my labs started going awry - blood in urine and elevated creatinine, sed rate, and CRP. Rheumy said I was beginning a flare. Went back to 60 mg/day of pred plus two rtx infusions. Labs are nearly normal and back down to 10 mg pred.

Good luck!

Dirty Don
02-14-2014, 02:11 PM
When I was off pred for almost 2 mos last September, I experienced the '80%' relapse after around 2 years. All the aches, joints, some blood in sinuses...they all came back, not harshly as before dx, but enough to send me back on pred. Am now weaning again...it seems to be a cycle for many of us that can't quite get there...I'm hoping this time...sheesh...

mishb
02-14-2014, 10:15 PM
Woz, we have noticed a pattern this Summer in or Aussie contingency :crying:

Some have weaned off pred too quickly and have had to go back up and others, me included, have had increased CRP and ESR levels, without changing our meds.

You said that your bloods are normal - I'm thinking that maybe this crazy (too hot) weather we are having, is a big culprit. The heat certainly swells the joints (well mine anyway)

pwc51
02-15-2014, 01:04 AM
For what it is worth here is my conspiracy theory (probably not what you want to hear!)!

When I last flared in early 2013 I was getting the severe joint pain moving around (a classic symptom) but my bloods were initially reasonably normal - as a result the rheumy was heading down other tracks. It was not until the pain got even worse and the bloods started to trend in the wrong direction that it was accepted as being a flare. I went onto 40mg Pred and the pain disappeared. They then repeated the RTX treatment and all has been reasonably OK since (although I must admit I have been having some niggly aches again over the past couple of weeks and wondering if I should jump on it with Pred before it gets bad).

woz
02-19-2014, 06:38 PM
Thanks for all the replies, I have not taken pred for almost 6 months, and have no swelling in my joints, I think I may have a few regular blood tests over the next few months, to be sure, to be sure.

Regards woz......PS sorry I didn't reply earlier, Internet issues.

vdub
02-21-2014, 07:27 PM
I have been trying to mix and match my drugs for 4 years trying to get to the non-exsistent state of 'normal'. I have now given up on that goal and accepted the fact that I will have pain to some extent for the rest of my life. I have drugs for 3 levels of pain; tramadol, hydrocodone, and oxycotin. Tram is my normal drug of choice -- nonnarcotic and non addictive. I need a hit of hydro about once every 2 weeks and can't remember the last Tim I took oxy.

I have resigned myself with living with pain and accepted the boundaries of my new life.

woz
02-21-2014, 08:49 PM
HI vdub, thanks for the information, are you taking any pred, or on a maintenance med, and has your pain slowly got worse, or stayed mostly the same over the last 4 years.

Regards woz......

vdub
02-21-2014, 09:40 PM
The pain has gone up and down a lot over the last few years. Recently, it has been up and down a little bit, but mostly steady. I can predict when it will go high based on the activity from the previous day, so sometimes I will get ahead of it by taking one of my stronger pain pills.

I am not totally fatigued so much like some of the others, but I move pretty slowly now. I used to be a ball of fire and very energetic, but that is a thing of the past. A busy active day for me now is to drive to the grocery store, wander around for a while, buy something, go get the car washed at one of those automatic places, maybe wander around a sporting goods store for awhile, then go home. A walk up to the mailbox (200') finishes off the day and finishes off my energy.

Just that amount of activity will cause significant pain. With the pain pills it feels like the morning after the first day of football practice where every muscle hurts and you even found some new ones that hurt as well. Both my joints and muscles hurt. In my arms, it's mostly the muscles and shoulders that hurt. In my legs, its the joints. But the pain has an unusual way of moving around a bit.

It is very difficult to get up from a chair and the first 6 or 7 steps are pretty shaky. After I get going, its not so bad and I can walk fairly well, but with a slight limp and a little struggling. There's no way I could break into a jog for even a couple steps. Interestingly, 5 years ago I was running 8 miles a day. One oddity is that I am still pretty strong. I can lift 250 lbs of dead weight (my rv hitch) from ground level to the bed of my pickup which is about 4' and I don't normally have any ill effects from the effort. The wife cringes when I do it..... :-)

I don't take any prednisone -- not routinely, that is. I have done the two week taper thing and I feel fantastic during that time period. I always carry a taper pack of prednisolnoe with me. Generally, however, it is believed that the hydrocortisone I'm on is having some anti-inflammatory benefits. Occasionally, I'll increase the hydrocortisone beyond physiological needs in order to get a treatment boost on the wegs side. It's not as good as pred, tho (not nearly as strong). I'm on cortef, but for me, it is a "keep alive" drug vs. a "treatment" drug. I don't have a pituitary gland (thanks to wegs) and not having a pit shut down all sorts of other glands. The hydrocortisone is a replacement drug for what my adrenal gland should be producing (cortisol), but it helps a little bit with the anti-inflammatory side. My main treatment drug is mtx -- I'm on 20mg/wk.

woz
02-21-2014, 11:22 PM
Thanks vdub for the info, I still work 40hrs per week, reasonably physical job. During the day at work, I am fine, but when I get home and sit down for a while, I seem to fatigue a bit, then the aches and pain start to flare up a little, some days are worse than others. My reumy has me taking panadol osteo, for starters, if this doesn't work, some sort of anti-inflammatory. Might be time I got a desk job, or retired.

Regards woz....

vdub
02-22-2014, 05:19 AM
NSAIDs, like Ibuprofen, work real well for me and knock the pain right down. Unfortunately, I can't take them due to conflicts with my other drugs. It's a bit of a bummer as they do work well.