Joint pain question

[godgirl]

So, I've read a lot on here about joint pain with Wegs. I know that's part of what i'm experiencing too. Question for you all.

When you have joint pain, do your joints get hot and /or swollen?

I'm very slowly tapering down from prednisone and I'm starting to get the random pains I had before I knew what was going on. Some days it's sooooo painful to get up from a sitting position. Parts of my back will hurt so much. Maybe my left knee. Maybe my right hip. And there are days when one or more of my hands hurt. But I've never really noticed that they are swollen or hot.

I ask because when I let my rheumy know that all my aches and pains were coming back, she asked if the joints that were hurting were swollen or hot. Not really was my answer. But I also told her that I'm getting to the point where if I wasn't on the pred, I'd be eating ibuprofen like candy. She just kind of dismissed it.

I did just think of something while I was typing this. Another thing I've noticed coming back is my lack of flexibility. When I was on the higher doses of pred, I could do anything! Now, it's like my body can't move the way it used to. Not stiff. Just not mobile or not working right. I had this happening before I knew this might be Wegs. Prednisone cured this, too. Could it be swelling in the joints and I'm just not recognizing it as that? Hmmm...

Anyway, your thoughts?

Jen

[Pete]

I had similar symptoms about a year ago. I had finished tapering off prednisone about two months before. I experienced the random joint pain (without swelling or heat). At about this time, my monthly labs started showing increased sedimentation rate and C-reactive protein. About a month later, I had a small amount of urine in my blood coupled with increased creatinine. These were indicators that I was flaring. I got two rituximab infusions during the second half of October. My labs returned to normal a couple of months later.

Hope this is useful.

[Geoff]

Hi Jen,

I can relate to your post in so far as joint pain, along with fatigue, were the main symptoms of my WG attack, however I did not experience any swelling or heat/redness issues.
How long have you been on pred and what doseage are you currently on?
I have been on pred for 6 years since DX and find that my mobility/flexability etc are compromised. I understand that pred will cause muscle wastage and damage ligaments so I pretty much lay ever ache and pain at Mr Steroids door!!
The worst period was when I was layed up for almost a year and my whole body was just like a piece of spaghetti, i.e limp and iseless!!
Are you sure your maintenance drug is coping or doing its stuff?? Pred is great at putting out the fire so to speak and of course will give you a "false" energy which we tend to accept as the norm.
Hope you get some answers soon. Best WIshes.

[Kathy B]

Hi Jen,

I'm also on maintenance Prednisone (5 mg daily) -- have been since March 2012. My joint pain has definitely been on the increase as well as neuropathy, stiffness, limp muscles, leg discomfort at bedtime contributing to lack of sleep, etc. My 3-month check-up is Thursday and I'll be inquiring about these issues in much more depth. I was diagnosed in fall, 2011 and had numerous issues the first year but have been relatively quiet in terms of WG. If I receive any info to share, I'll post. Good luck to you!

[godgirl]

Thanks, everyone.

I'm glad to know that I'm not crazy - or that this isn't just age related. I'm only 43 for cryin' out loud! I haven't been officially diagnosed, but they are treating me as if I have Wegs because of symptoms. (Doc wants a positive biopsy before an official diagnosis.) My first symptom that sent me to the doc was scleritis last year right before Thanksgiving. I started on 80mg of pred at that time and ended up doing 3 tapers over the next 2.5 months and wasn't able to go below 20mg without my eye flaring. During these tapers, they also discovered my hearing loss and I started having random nosebleeds. At my last taper, I flared AT 20mg. That's when they started me on methotrexate 15mg (6 pills) per week and I've been on 20mg (8 pills) a week since April. They kept me at 20mg prednisone until I got to the full dose of methotrexate and they are now tapering me.

For the first part of the taper, I went down 2.5 mg every two weeks until we got to 10mg. I then held steady from late May to mid August at 10, and then went down to 9 about three weeks ago. I'll be at 9 for the next week - they are tapering me 1mg per month. But had other symptoms when I went to 9 as well. They've subsided. I wonder if it was my body getting used to the change. But the joint pain just gets worse. This summer has been hard - I'm usually pretty active outside and the pain and horrible fatigue kills me. I can't do anything outside (or inside for that matter) for more than a half hour before I'm shaky and sweaty and have to lie down.

So, back to the joint pain. For the few months prior to Thanksgiving, I had really bad joint pain. Was taking a TON of ibuprofen just to get thru the day without pain. I never went to the doc because I'm over 40, overweight and sit at a desk all day at work - why would I go to the doc for that?

Now that pain is creeping back. And it's the same kinds of pain. Not hot or swollen, but just hard to get around. I just don't want to have the doc not take it seriously because the joints aren't hot or swollen. It's nice to see by your responses that they don't have to be - it's something I'll bring up with my doc later this month when I see her. I'll be down to 8mg (hopefully) and have a better idea if I'm flaring.

Thanks again.

Jen

[morningsunshine]

Just to add another experience of joint pain without heat or swelling: I was only diagnosed at the end of May, but the joint pain I had pre-prednisone was exactly what you are describing. I didn't have any heat or swelling--it was just painful to move (particularly my hips and knees). I'm only 27, was at a healthy weight and was very active at the time, so the sharp pains were definitely not just part of the aging process for me.

When I tried to taper off prednisone too fast my joint pain returned. After talking to my doctor I went on a slower taper and the pain went away again. This happened when I was at 40mg of pred--now I'm down to 15.

[mishb]

Sometimes I have joint pain with redness and swelling - other times it feels more like a broken bone than an actual joint, and then there is no redness or swelling.

I'm also on 20mg MTX but it is only 2 x 10mg tablets. I would hate to take 8 tablets - just the 2 is enough

[tigerleah23]

I am also having severe aching. I absolutely despise prednisone, so my Dr. has put me on Mycophenolate. It hasn't helped my pain though. I am also eating tylenol like candy. I haven't been sleeping because laying down hurts worse than keeping moving. I am afraid I might have to go back on the cyclo and pred. to put my WG back into remission and get out of this constant pain. Does anybody do anything else to manage this? I REALLY want to avoid the chemo and steroids!

[drz]

I think joint pain from tapering pred usually disappears in a few days. Mine did. Pain from flaring or other increases in residual symptoms does not and if it doesn't decrease in a few days it usually means you need a change or increase in your meds. That is why many Weggies don't get belong a certain level of pred despite trying for months or even years.