Is anyone experiencing extreme aches, soreness & stiffness in their legs & arms?

[HawaiianPrincess]

Hi,
Just wondering if anyone is experiencing a lot of pain in their legs & arms? He has trouble walking, because it's so painful. My hubby is newly diagnosed with Weg's as of mid-September 2013. He's currently taking 60 mg prednisone, & just started on week 3 of 150 mg Imuran. He still has fevers off & on. Today, he spiked a temp of 102. He's also been having peripheral neuropathy in his feet & it travels up his calves.

We do have a referral with a Neurologist, just waiting for them to call back with appt time. Our Rheumatoid Specialist doesn't say much regarding the pain in his legs & arms?? She says it's not symptoms of Weg's, but more of RA symptoms. I've been reading that a lot of Weg's patients have pain in their legs & arms. When will this ever get better for him? He's been missing work here & there. Just wish he could get some relief. :sad:

[drz]

Pain in joints is very common in Wegs and it can vary and move around. I remember when it was impossible to sit down on chair or get up without using my hands to help because of the pain. Treatment relieved this pain for me.

[Dirty Don]

Some arm and leg pain is due to the drugs...primarily the pred...so your spec is correct in a sense. If we didn't have WG tho, we wouldn't be on pred...sheesh. Some peeps have mixes of pain, neuropathy, and cramping; but as the pred declines, so do the symptoms.

We all hope for and work at being better, so patience and fortitude go a long way for most of us. As he's on week 3 of Immuran, you should probably allow for another 2-3 weeks for the drugs to work efficiently. If his numbers are better, then he may consider weaning off pred thru slow reduction. I'm hoping your specialist has read this page at least...

Best to you both, hang tough.

[HawaiianPrincess]

Ok, I'll tell him to hold on for a bit, while the meds kick in. At least our Rheumy told us it takes 4-6 weeks before you see the effects of the immunosuppressant drugs. We didn't realize that prednisone causes aches and pains too. It's such a miracle drug for him right now. He would not function without it!

Thanks for all your encouraging words

[Dirty Don]

My legs and feet bore most of the cramping, thus pain, and neuropathy. The neuropathy has diminished, and the cramps are all but gone. Then again, I'm back on coffee...watch out!

[Pete]

I had symptoms similar to drz's when I was off pred. They were the earliest symptoms of a flare.

[Alysia]

Hi Princess & Steve,
somtimes I have pains all over the body. not only joints. I don't know if it is the meds (after RTX it was much more) or WG or some virus. it comes and goes.
I do a walk every day for at least 30 min, and it helps a lot to relieve the pain. walking for me is like the oil to the "tin man" in "wizard of OZ".

[annekat]

My legs and feet bore most of the cramping, thus pain, and neuropathy. The neuropathy has diminished, and the cramps are all but gone. Then again, I'm back on coffee...watch out! Don, when were you ever OFF coffee?

[annekat]

Well, my experience is different than Don's. I had a lot of joint pain in arms and legs before and around the time of my dx. As soon as I started pred, it disappeared, and it's only started to come back when I've been trying to taper pred. Not this time, so far.... So it is news to me that pred causes joint pain. To me, it is the only thing that helps, and I even sneaked some before my dx because I knew it would work, and it did, at 5mg./day. Everyone is different! It is true that the immunosuppressants like Imuran take time to work.... in my case it was CTX. I'm sorry that Steve is still dealing with that joint pain and I hope it subsides soon.

The neuropathy is another matter, in my case, anyway. Pred doesn't help it much and I don't know if it causes it, as some imply above. Mine did gradually improve with treatment, including tapering of pred and the switch from CTX to MTX, but I still have it in my feet, mainly the toes.

[Alysia]

The neuropathy is another matter, in my case, anyway. Pred doesn't help it much and I don't know if it causes it, as some imply above. Mine did gradually improve with treatment, including tapering of pred and the switch from CTX to MTX, but I still have it in my feet, mainly the toes.

I just found something that helps: I was feeling the beginning of prob neuropathy in my foot. I went to do "medical pedicure". it is a pedicure that is given to diabetic people. all the "old skin" was gently removed with special peeling creme and stone. since then, I am using foot creme every day and doing a bit of massage. so far, I don't have neuropathy.

[NikkiNicole]

I get joint pain a lot. It's been better lately because I think my MTX is starting to actually help. But, when it gets bad, I can't lift my shoulders, my elbows hurt, my knees, my ankles, even my hips! Sometimes it's the smallest joint like the middle joint of my finger, or the tip. Small spot, BIG ache!!!
Ibuprofen was my friend ....

[HawaiianPrincess]

Well, it's looking like each one of you have struggled with aches & joint pain. Steve decided NOT to take his 60 mg of prednisone in the morning. He decided to take it later in the afternoon. What a difference it made! He wasn't so groggy in the morning when he wakes up, has more energy & less joint pain, so he an perform his job. He may even split his dosage & take some late morning & late afternoon. Thank you for all your valuable info! Finding this forum has been the best thing to ever happen to ya. It gives me hope & helps me deal with all the scary stuff. Everyone of you are Angels!

XoXo LeAnn

[annekat]

It's common for people to split the pred dose or other oral meds at the higher doses. Some people would have trouble sleeping if they took 60mg. pred in the afternoon. For others, it might not be a problem... pred never kept me awake much, especially when I was really sick and so fatigued all the time. Maybe now it would... I take mine in the AM.

[mishb]

Pred was the cause of massive pains in my calves to the point of feeling like the muscle has snapped.
I remember Sangye saying that the pred can cause this.

When I got to about 10mg pred and lower, the calf pains went away.......therefore not necessarily WG related but medication for WG related.

I hope Steve's symptoms start to ease off, very soon

[Alysia]

Hi Steve and Princess. I hope the change in the pred taking will help to reduce the pains.
I am sending you my prayings and gentle hugs.

[annekat]

I remember the calf pains, too, and cramping, and wasn't sure if they were related to neuropathy or what, but can go along with them being caused by pred. They did lessen as I reduced the pred. But these are a lot different to me than the joint inflammation pains that are listed on various sites as being symptoms of Wegs disease activity and which I've heard described on here as "roving" pains. For me, I don't remember them moving around much, and they were most prevalent in my knuckles, knees, ankles, feet and elbows. They felt like what I'd think arthritis would feel like, though I've never had it that I know of, and was tested for it with negative results. Before I knew anything about Wegs, but obviously had it in retrospect, I had these pains off and on with no explanation. There were days I could barely walk. I had taken pred in the past for sinus infections and felt it would help the joint pains by reducing inflammation, so I got ahold of some and found that only 5mg. did the trick, and we should keep in mind that my adrenals were not shut down. I wasn't having the calf pains at the time. I just figure there are lots of different pains that Weggies get, and some are caused by the meds and some are caused by the disease activity and its accompanying inflammation. I remember Sangye saying that Wegs joint inflammation would not cause permanent damage to the joints the way that RA joint inflammation would. I never quite understood that and think there was a reason given but don't remember it. In any case, I remember threads where people said that during pred tapers at the lower end, like around 10-15mg. or lower, they would start to get these joint pains again and that would be a sign they might be tapering too fast. I have experienced that myself, though it wasn't severe, just clearly observable.