Joint pain

[Beckyk]

I have a question. Does anyone else have really bad joint pain and if so how or what helps it. I have really bad joint pain in my wrists and fingers. Its sticks around for a few days and then gets a little better. I don't know what to do anymore.

[Dirty Don]

Hi Beckyk, for me and others on here, joint pain is/was a sign of flaring, especially if it's recurring and traveling. There isn't much one can do IF flaring. Analgesics/painkillers only work temporarily. If it is in fact a flare, one needs to start or increase the prednisone for a bit. If it's the more typical arthritic pain...not sure...lot of my friends take Celebrex or something similar, it seems to help many. Best of luck.

[Alysia]

Hi Beckyk,
you are new here, are you ? so, first of all: welcome :hug1:you are invited to introduce yourself when you feel like.
do you have swelling in your joints ? redness ? these plus pains, are mine signs to call my wg-doc and ask what to do. usually he elevate my pred dose for couple of weeks. do you have other wg-symptoms together with the aching joints ?
what meds are you taking ?

[Beckyk]

Thanks for the responses. I am new here. I don't have any redness or swelling in my joints, they just hurt. My weg is in my sinuses and my lungs. I'm taking 150 mg of cyclophosphamide, bactrim DS, calcium with vit D, fosomax, and I'm down to 5 mg of prednisone. I guess if it means increasing my prednisone i would rather deal with joint pain!

[chrisTIn@]

Hello Beckyk, and welcome here.
You say you 'd rather deal with joint pain then increase prednisone. I can understand that. I am also not fond of prednisone.
But still... sometimes it is nessescery, depending on you blood/labresults. You have to talk to your doctor, I hope he or she is a real specialist in Wegeners/GPA.
Keep us posted.

[RudiK]

Welcome to this forum, Bekyk. The joint pains you're describing seem to be normal as you get to the low preds dosage or get off the preds. I'm off the preds for about three weeks now and my joint pains are coming back. In my case they are in my knees, hips and shoulder, they are not very strong yet and I can take them. I have a doc appt later this month, will see what he says. If my pains don't increase I will probably accept them rather than go back on the preds.

[Pete]

Hey Rudi,

I had a similar situation last summer. I had been off pred for about four months when I started having the roaming joint pains in hips and knees. Wegs doc ran some tests and determined I was flaring. Went back to 60 mg of pred (back down to 12.5 now), and had two rtx infusions in October. My pred taper will end at the dosage that keeps me asymptomatic. Hope it's zero, but I could deal with a small (1-5 mg/day) dose if that would do the trick.

I used to visit at the Hoover plant on I-10 at about exit 6. Would you by any chance know anyone who works there?

[NikkiNicole]

I have joint pain when Weg's isn't happy. I have been having swelling and pain in my knees but I can't tell if it's because I've been walking, or if it's Weg's. It's not the usual knee pain from walking. I had an angry shoulder last week too.

[Beckyk]

Pete I don't live around there. The closet big city I live by is Eau Claire, Wisconsin.

[mishb]

Hi Becky,

If the pain in your hands and wrists feels like they were slammed in a car door, and then after a few days is gone.......and then comes back again a few days later - it is WG.
Arthritic pain, without medication, is continuous as well as red and hot (rheumatoid arthritis)

I'm sorry, but 5mg pred may not be enough to keep the inflammation at bay for you.

You probably need to have some bloods done, and then check with your doc's

[Alysia]

Hi Becky,

If the pain in your hands and wrists feels like they were slammed in a car door, and then after a few days is gone.......and then comes back again a few days later - it is WG.


I love your descriptions Michelle :thumbup: you had some others, very accurate, considering other symptoms.
maybe we should open a new thread: how does it feel like ?

[Beckyk]

That was a wonderful description of the pain. I never thought about it, but that's what it feels like.

[RudiK]

Hey Rudi,

I had a similar situation last summer. I had been off pred for about four months when I started having the roaming joint pains in hips and knees. Wegs doc ran some tests and determined I was flaring. Went back to 60 mg of pred (back down to 12.5 now), and had two rtx infusions in October. My pred taper will end at the dosage that keeps me asymptomatic. Hope it's zero, but I could deal with a small (1-5 mg/day) dose if that would do the trick.

I used to visit at the Hoover plant on I-10 at about exit 6. Would you by any chance know anyone who works there?

Hello Pete, I'm due for my quarterly blood test this week before I see the doc next week. And will go from there. About the Hoover plant, I know a couple of guys that worked there, but they were part of a large layoff last year when the company decided to relocate some of the production to another plant out of town and reduced the workforce by one half.

[LillysMom]

This thread is good for me, info on what we experiences with Lilly. All her joints swelled, one after the other, knee would swell big as small grapefruit, red and hot. Then 15 minutes later knee would be normal, and elbow would be huge! Crazy time. (That was the beginning 20+ yrs. ago) This is first time I've heard much about pain. I wondered, because last few years sinuses gradually disappeared, much pain. Lilly told me to tell you'all she will be back on tomorrow. She needs to come here a use my computer, hard for her to use her I-phone to talk like she wants to. I really appreciate the information from all of you. I, too, need to know we are not alone in this.

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[mishb]

That's how mine was too.

One day the knee was so swollen - they said bursitis. Three days later it was gone.
No pain for two days and then the arm or hands, again severe pain for three days and then gone.
No pain for two more days then it would be my ankles or my shoulder or neck.

I always had three days of the worst pain and then always two days off before a different pain - however it wasn't always in a joint like RA
Sometimes it felt like the bone or the muscle.....no where near a joint. It was really strange because it normally started about 2 or 3am and I could feel the pain creeping up slowly whilst I was in bed, starting from a 2 on the scale and ending at about an 8 on the pain scale, by 7am

Lillysmom, you will find that many many people on this forum had or still have the same pains :crying: