Joint Pain

[Brooke]

I have not had joint pain ever, I hope that I do not. I was just wondering how many of you have it? Did you have it before being diagnosed? Or was it from Pred/Cytoxin/Rituxan/Or some other drug?
Just curious.

[Sangye]

Wow, you are lucky with that. It was my first symptom--woke up one morning and one finger joint felt as if it had been smashed by a hammer. Gradually it spread to all joints except my spine. It was migratory. I can't even describe the pain. I've had broken bones that weren't nearly as painful. Within a few months of it starting I was pretty much crippled with pain. It was the only symptom I had for many months, and it's a reliable indicator for me that the Wegs is either waking up or fully awake.

I've also had pred withdrawal pain. It can be surprisingly bad, but for me has a very different quality than Wegs pain and is so much easier to handle.

[Psyborg]

I also had joint pain as my first major symptom. It can be pretty excruciating. I'm well controlled but still get an occasional twinge, I think the twinges are largely due to tapering Prednisone. Still get the pain and stiffness in my index finger fairly frequently. Occasionally it crops up in an ankle or knee as well.

[Jack]

Almost unable to walk due to joint pain before diagnosis.

[Brooke]

Yikes, does not sound good at all. Does the joint pain stop after Cytoxin/Rituxan? Or what helps the pain?

[freakyschizogirl]

I got pain when i went on the pred for the first few days. Other than that i do get aches and pains in my Ankle but thats cos i broke it 2 years ago.

[Psyborg]

Most of my pain went away with the pred, even more has gone away over time of being on CTX then MTX. I have to say that at one point I had to sit on my butt and slide down my stairs to get down because the pain and weakness were so intense. Now it's a mild annoyance at worst, and some days I have no pain at all.

[Geoff]

My experience of joint pain was totally bizarre in so far as I would be OK at work and then it would gradually kick in during the afternoon leaving me 'crippled'. I couldnt pop the pain killers out of the foil, my wife would have to line them up along with the sleeping tablets. Come the morning, I would get up, shower, go to work and start all over again! Luckily after DX all joint pain has gone, although I get 'flashes' in my toes or fingers occasionaly.

[pwc51]

My experience is like Geoff's - build up during the day and by the time I am back from work it was excrutiating! By morning it was as if I had never had a problem. Usually a different joint or joints each day. Largely gone now but a good indicator of flare.

I have had other pains that seem to have been associated with the large pred infusions and whilst very uncomfortable it is a different 'quality' of pain! These are around for a few days and then go.

[ArlaMo]

I had pretty severe joint pain before I was diagnosed. I even got cortisone shots in my knees and elbows - I could barely walk or move my arms. Trying to stand up from a sitting position was excruciating! I got stuck in the tub once for several hours :blushing: . I got in to soak my aching joints and then could not get out again. Going on pred has definitely helped with the pain, but I still get achy sometimes.

[DEE]

I had pretty severe joint pain before I was diagnosed. I even got cortisone shots in my knees and elbows - I could barely walk or move my arms. Trying to stand up from a sitting position was excruciating! I got stuck in the tub once for several hours :blushing: . I got in to soak my aching joints and then could not get out again. Going on pred has definitely helped with the pain, but I still get achy sometimes.
Been stuck in the bath too :biggrin1: now always make sure hubby is about just incase . left my keys in the front door too so know one could get in to me Had to make the decison to drag myself out tears and all not going there again

[Brooke]

Sounds like a lot of people have joint pain with Wegener's, are there others that have had no joint pain? Anyone? Anyone?

[ArlaMo]

Been stuck in the bath too :biggrin1: now always make sure hubby is about just incase . left my keys in the front door too so know one could get in to me Had to make the decison to drag myself out tears and all not going there again

The sad part is, hubby was home! I just could not handle the pain to stand up, even with his help!! And I have a pretty high tolerance for pain - natural births for 3 of my 6 children, kidney stones several times - but this was just unbearable!

[Kathie28]

Joint Pain was my first symptom too. I went to the doctor over and over and finally they decided I had RA which later turned out to be Wegner's. The pain was awful some days I couldn't walk or my fingers would get locked out to the side and I couldn't write. Each day the pain moved to a new location. The one great praise I can sing of pred is it made the pain go away. Before starting treatment a nurse told me I had the highest inflamation rate she ever saw because it was too high to measure on the scale. Now I am in the normal range after 4 weeks.
I hope you never have it!!!!

[drz]

Almost unable to walk due to joint pain before diagnosis.

Me too. It was my second symptom after nasal bleeding. It gradually became worse over a year period till I was diagnosed and treated for Wegener's disease.

[Sangye]

I also had the same pattern of increasing pain later in the day. I dreaded 8 pm, when it would start snowballing. The entire night was like a nightmare. I have an extremely high pain tolerance and I was literally screaming in pain all night for months. I thought I was going to lose my mind, actually. I remember my mom saying she knew something was really wrong with me, when at age 42, she heard me say "ouch" for the first time ever.

Brooke, the joint pain goes away with proper treatment. It's a symptom of active disease. I still have some when the Wegs dog is asleep, but nothing like it was.

[Brooke]

So sorry you all had to go through that, what a nightmare. I'm glad it got/gets better with treatment.

[vdub]

I did a search for joint pain before posting a new thread as I wasn't sure it was a wg symptom. I guess it is. I have had joint/muscle pain in the large joints for several months -- especially the knees and elbows. Mornings are worst and getting out of bed is mildly painful -- not excruciating, but definitely attention-getting. Things get much better after I take the pain meds.

Right now I'm taking Tylenol T3 which has 30mg codeine and 300mg Tylenol. I started the T3 because of headaches, but it works well for the joint pain, too. I try to hold the T3 down to 3 tabs a day, but sometimes I'll need 4. I basically take them as needed and stay aware of how many I'm taking. I'll switch to Tramadol in about week when my T3 runs out. The Tramadol does about the same thing, but is less addictive.

[Sangye]

vdub, maybe I've said this before... but if you're having that much pain it sounds like the Wegs is still very active. You shouldn't need to take pain meds for joint pain. What do your docs say?

[vdub]

Well, I actually haven't really brought it to their attention. I've had bad knees for several years due to 35 years of jogging, so I kind of chaulked it up to getting old. The pain is more universal now and not just limited to the knees. Maybe it's time to put some focus on it.

[JanW]

Other than my nasal crusting, which went away within a few weeks of my starting treatment, joint pain was my main (painful) system and that really eased off quickly once my WG was under control.

You should definitely mention it to your doctor.

[beauty]

My grandmother who is 86 was recently diagnosed with Wegner's. She now is experiencing joint pain in her arms and legs and is not able to walk. Currently only taking pred which is being tapered. Because of her age and immune system her doctor is not recommending prolonged use of pred. She is on oxygen because her lungs are inflammed and her kidneys are not the greatest. Any tips you can give for someone experiencing these symptoms at this age.

[Jack]

Hi and welcome to the forum. :smile1:

At the age of 86 I would be taking all the medication required for a good quality of life and hang the long term consequences. Is she not taking an immunosuppressant? This is normally required in order to control Wegener's and if not controlled things can get very bad very quickly.

[JanW]

I agree with Jack. Regardless of age, immunosuppressants other than pred will be needed to bring her disease under control. These are typically cytoxin, rituxan, methotrexate, imuran and cellcept.

[Sangye]

I agree with Jack and JanW. And welcome to the group, beauty.:smile1:

[renidrag]

That's four in a row, I agree with Jack also.

And as far as joint pain goes, it also was the first symptom for me, of course I did not know it at the time. I dreaded getting out of bed in the morning and having my feet hit the floor. It still is there from time to time but has been replaced by neuropathy in legs and feet. Tingly and numb is better than pain. See a neurologist now for it. He wanted to put me on Nurontin (?). I asked the side effects he said weight gain so I properly thanked him and said I can live with the feelings I have.
Dale

[Chris G]

Sounds like a lot of people have joint pain with Wegener's, are there others that have had no joint pain? Anyone? Anyone?

Looking for someone without joint pain? Me! No joint pain. Ever. It's one of the reasons the local rheumy's (idiots) were able to send me on my way so easily - telling me I wasn't sick enough to have WG.

But I did have shoulder tendonitis prior to both flares, which I'm convinced is related to the disease, because I never hurt or overused my shoulders in any way.

[Sangye]

Looking for someone without joint pain? Me! No joint pain. Ever. It's one of the reasons the local rheumy's (idiots) were able to send me on my way so easily - telling me I wasn't sick enough to have WG.

But I did have shoulder tendonitis prior to both flares, which I'm convinced is related to the disease, because I never hurt or overused my shoulders in any way.
Wegs "joint pain" is not always literally in the joint. It's often in the joint and surrounding soft tissue, including the joint capsule. I'd put my money on your shoulder "tendonitis" as being Wegs.

My very first symptom (6 mos before any scary symptoms) was heel pain, on the Achilles tendon insertion. It went away with treatment and is the first symptom to return when the Wegs dog is beginning to wake up.

[vdub]

It's often in the joint and surrounding soft tissue
That's how mine is... Both the joint and surrounding muscle. It's not excruciating, but is definitely annoying and I know it's always there....

[beauty]

Thanks everyone for responding. I'm so glad I joined the group. She is currently not taking any immunosuppresants but I plan to ask her doctor tomorrow. I'm not sure how long she has had wegs but it is something that was recently diagnosed. I will keep you posted of the response from the doctor.

[LisaMarie]

Looking for someone without joint pain? Me! No joint pain. Ever. It's one of the reasons the local rheumy's (idiots) were able to send me on my way so easily - telling me I wasn't sick enough to have WG.

But I did have shoulder tendonitis prior to both flares, which I'm convinced is related to the disease, because I never hurt or overused my shoulders in any way.
I have something similar to that..I have left shoulder pain that radiates to my jaw and chest wall...all heart stuff always comes back negative it had=s a sudden onset and can last from 1/2 to 5 hours...and it hurts like you can not believe...had an EMG ...no one can explain it ....it started a year before my stenosis of my trachea.....i could be eating sitting at the computer or walking down the hall and bam it would hit me...they are less frequenct now....so maybe it was my warning sign for WG...and maybe it explains why my left extremeties are always more swollen than my right...who knows ...will try to get Mayo to address it..wish me luck:biggrin1:

[LisaMarie]

I also have joint and bone pains when the WG is more awake it seems to be worse

[Brooke]

So I'm not the only one without joint pain, glad we don't. I wonder too if your shoulder is related to the disease? I don't know if people with joint pain have it more symmetrical? Like would both shoulders be hurting? Or both knees, elbows, feet? Or can just one side be painful?

[Sangye]

It is sometimes symmetrical but often not. The times when it's symmetrical are what really throw off the docs during diagnosis. Symmetrical joint pain occurs with things like RA.

[delorisdoe]

It is always symmetrical when it come to my knees. one sometimes is worse than the other. all of my other pains seem to take turns. It is as if my body is trying to get my attention. it sais "fine if you are going to ignore the knees than we will make your right hand hurt today, tomorow ? who knows?. I actually know when my anca will be elevated from my pains. I went to my doctor a few months ago because i know that the wg is creeping back-my knees are telling me so. The day after my appointment I recieved a phone call about going for more blood work but she did not tell me why and i dont ask. I assumed they forgot that they had already given my a requisition so I just ignored the message and thought "okay i guess my knees hurt because i am fat. so started a diet that day and have lost 60 pounds. aparently my weight is not the reason and i am using this "wait and see aproach" for treatment as a last effort to lose 20 more pounds in preperation for the prednisone. Does anyone know if weight gain with prednisone is unavoidable?

one more question...my face has been hurting for 5 days now. I dont believe it is a sinus infection. would this be another symptom of a flare? It feels as though someone punched me in the face.

[Chris G]

[QUOTE=Sangye;36820]Wegs "joint pain" is not always literally in the joint. It's often in the joint and surrounding soft tissue, including the joint capsule. I'd put my money on your shoulder "tendonitis" as being Wegs.[QUOTE]

Interesting......I always thought the tendonitis was related to WG, because the timing was too perfect with both of my flares. The first time it was both shoulders, and disappeared when the flare subsided. The second time it was only my right shoulder. But this time the pain was debilitating. I could not move my arm at all, without feeling excruciating pain in the shoulder. Happily, a nice syringe full of cortisone did the trick for me.

Well, perhaps I'm not completely without joint related symptoms. But for now at least, I have none.

[vdub]

Does anyone know if weight gain with prednisone is unavoidable?
To a point, that is true. I'm no doctor, but my understanding is that pred does several bad things. First, it increases your appetite. Of course, you could control that with a lot of will power, but it seems that you have enough problems to deal with. Also, it causes water retention, so you sort of plump-up all the way around. I'm not sure why the moonface comes into play, but it certainly is associated with the steroids.

One thing that the pred does that is unavoidable is cause a pot belly. The pred destroys the calogen in your muscles. Calogen is the connective tissue that holds your muscles in-place. Without the calogen, you develop the pot belly and there isn't anything you can do about that.

So, the answer is that you can really, really work at it and control the weight to a certain extent, but some of the weight just can't be helped.

[delorisdoe]

i do remember the will power...dinner and then half an hour later i could have eaten a big mac combo with large fries. or two. :rolleyes1:

[vdub]

half an hour later i could have eaten a big mac combo with large fries
Yeap! And to make matters worse, did you know that MacDonald's will make your BigMac using quarter-pounder patties if you request it? :sad:

[delorisdoe]

I did not know that.

[Chris G]

We should all meet at McDonalds for quarter pounder Big Macs! We can be fat and happy together for about 3 minutes! 'Til reality (and the next hunger pain) sets in.

[delorisdoe]

ha ha. My husbands gp told him that prednisone does not cause weight gain and that i could just eat less if i chose to. oh ok. i suppose that is true but do people not on prednisone gain all their weight in their face and the back of their necks? I am not a fan of his doctor.

[delorisdoe]

also, I was on 100mg of prednisone for some time so i am not sure if any amount would do that to me again.

[Chris G]

Really, just stop eating! Simple as that right? Paalease!! Those that haven't walked in our shoes should really just keep their opinions to themselves. From a clinical standpoint, I suppose one could say......."just make healthy choices, and you won't gain weight". But, from a practical standpoint.......we're starving!! AND we're sick with a disease that takes away our energy. No energy means we have no hope of working off the extra calories we've eaten - even if it's only a few......a few adds up over time.. Ok, I'm climbing down off soapbox.....

I've found the hunger to be dose related. At 17.5 mg pred, I'm less hungry than I was at 40mg. But, let me tell ya.....the pounds are NOT melting off! And I still don't feel well enough to get some exercise. Sigh....

[Sangye]

Chris, that's been my problem for the past 5 yrs. No one even told me the pred made you gain weight. I started out on 1,000mg IV pred. I thought the intense hunger was due to being severely anemic and on chemo-- like my body just needed nutrition. I gained 40lbs in 4 months. Add another 20 since then due to 5 yrs of not being able to exercise along with being on pred. I'm miserable at this weight.

For many people, pred changes the metabolism and makes it extremely difficult to lose the weight. It's definitely done that to me. :sad:

[delorisdoe]

It has taken me ten years. It is rather ironic that i have accomplished the weight loss just in time for another round of treatment. yeah me.

[drz]

It has taken me ten years. It is rather ironic that i have accomplished the weight loss just in time for another round of treatment. yeah me.

lucky you, but what great timing!:ohmy:

[Sangye]

If I were starting again I know I could avoid most of the weight gain. I was back on high-dose pred for about 7 months last year and only gained 5 lbs. I walked around hungry all the time.

Even if I do that now I don't lose weight, though. There's only so much you can do if you can't exercise.

[delorisdoe]

i like to hike and i am a clutz so i have not exercised much since the end of the summer. I do hope i have gotten used to being hungry so that i will not be to disrupted if i do go back on a high dose of prednisone.

[beauty]

I asked the doctor today about prescribing my grandmother with immunosuppressants in addition to pred and he said he wants to do a biopsy first before prescribing. He also doesn't think her body and immune system will take the biopsy and the meds well. When he first did an open lung biopsy a few months ago her lungs collapsed and fortunately he was able to stabliize her. I want to do what I can to help her but I also don't want her to suffer. Based on the way she has been feeling lately I'm not sure her body can take much more. How does one explain to an 86 year old that she can get more meds but you need to be hospitalized for a biopsy and then the meds might not make you feel well. There are so many risks. Is it wrong to just to wait it out and not do the procedure?

[delorisdoe]

I dont really get why he would have done a byopsy on her lung in the first place or why he would want to do another one. I would not allow it.

leigh

[pberggren1]

Beauty, I tend to agree with Leigh. Where do you live and are you close to one of the Vasculitis Centers?

[JanW]

There are many things a doctor can do (starting with certain blood tests) that may be able to detect the presence of WG without biopsy. Certainly biopsies are far from certain (sometimes they can't get enough material or prove inconclusive) but if your doc is looking at a textbook to find out what WG is really all about (as opposed to having any personal experience) he will see that a biopsy is the 'gold standard' and the only way to definitively diagnose the disease. For many of us we are being treated (and responding to treatment) without that positive biopsy (me included).

Has the doc run an inflammatory panel to at least check PR3 and c-ANCA levels -- this, along with ESR (sed rate) may yield some clues.

You will also have the very real bias that your mom is 86 years old and docs may think that she cannot withstand this treatment. I don't know what her health was like before, but your doctor shouldn't be thinking that she cannot tolerate a course of immunosuppression based merely on her age, and you can't discount the fact that she may get better, go into remission and have a good quality of life. Many people really turn around after having been treated, and attain a level of activity and well being that is more than acceptable to them.

[Sangye]

Beauty, in deciding whether and how to treat her (or do further biopsies) her docs really need the input of a Wegs specialist who can review her health status. There's no way we can tell if she can endure the treatment or not. I suggest you get a VF consultant to advise her docs. They'll do this for free and she doesn't have to travel. Let us know if you need help with that.

[beauty]

Thank you all for your suggestions. I truly appreciate it. We live on Guam and I'm certain there are no specialists here. Can anyone suggest a VF consultant that could assist?

[drz]

Thank you all for your suggestions. I truly appreciate it. We live on Guam and I'm certain there are no specialists here. Can anyone suggest a VF consultant that could assist?

Call the Vasculitis foundation or email them and ask. Who you get for such a consultation might depend upon which physician wants to consult and what questions or concerns they have about the patient and treatment.

[Sangye]

VF docs consult with docs around the world, so Guam shouldn't be a problem.