Hi all!

[meganjean26]

I just wanted to introduce myself I have been going through my 3rd relapse and a coworker suggested I find a support group. I guess they are sick of hearing me talk about it. Lol. I have have wegeners for 13 years. I've done 2 years of cytoxan. Prednisone on and off which makes me feel like super women but I hate the side effects. After cytoxan I switch to methotrexate pills and recent changes to injections. I have had a total of 9 rituxan infusion which usually works well but it's been a very long year. I did 4 infusions of Rituxan in sept and a couple months of steroids and increased my methotrexate but I'm still not getting better. My Crp and anca have doubled and I'm coughing worse and wheezing all the time. Don't sleep at night and this horrible foot pain. Does anyone else get foot pain. Mine doesn't feel like joints. It honestly sounds like text book plantar fasciitis but I blame everything on wegeners. I so glad I found this group. It sucks to burden friends and family and you can't blame them. They will never really understand.


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[im so blessed]

Hi Megan, You sound like a weary traveler. We all take our turns feeling that way i think. The road can get long. Keep your chin up! I have had wegeners for 16 years. The thing that keeps me going is realizing my blessing-i'm still here to talk about it. But its pretty easy to forget. I have had that foot pain your talking about for sure! Feels like there are rocks in my feet that put on serious pressure when i walk. Usually prednisone helps this symptom pretty quickly for me. I hope you hang around and share more of your story. And as far as ppl not understanding- WE DO!!!!!

[MikeG-2012]

Feels like there are rocks in my feet that put on serious pressure when i walk. Usually prednisone helps this symptom pretty quickly for me. I hope you hang around and share more of your story. And as far as ppl not understanding- WE DO!!!!!

Yes, unfortunately, mine do the same thing. When I start to hurt all over, it usually means I am due for a short burst of pred--dosing varies upon the moment, but I've had as high as 60 MG to start the process. I really detest the stuff, but it works, so that far outweighs the side effects.

[Pete]

It honestly sounds like text book plantar fasciitis but I blame everything on wegeners.

Jack, one of our departed warriors once observed, "Just because you have wegs doesn't mean you can't have something else." Might be good to have your feet checked out...

[annekat]

Welcome, Megan Jean. I don't have the foot rocks problem but we are all a little different. I'm currently dealing with the effects of thinning bones, contributed to by years of pred, almost recovered from a fractured pelvis and now last night sustained a cracked or bruised rib, which is painful and sets me back some more. I'll see the bone doc tomorrow. Otherwise, I'm doing pretty well, have not needed RTX yet, took CTX in the beginning and now on MTX for several years. No kidney involvement so far and only 2 moderate flares resolved by adjustments in meds. I'm just so glad you have found this forum, it is really the best in terms of ongoing support, info, and friendship, and I hope to hear more from you soon!

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[vdub]

I have some foot issues, but not sure I can blame it on wegs. My toes are normally very cold even if I feel warm. However, I haven't had the rocks.

[Rose]

Yes, have had that foot pain on 2 occasions since diagnosis in 2008. I remember at one time I could barely walk it was so bad. Ended up at a podiatrist and had insoles made but to be truthful, they never really helped. What did help was time and although it took a few months,the pain eventually went away on its own. Sure there are some threads on foot pain as I remember responding to one a few years back. Think it is quite a common thing with weggies.

Rose

[whatthewhat]

Hey, welcome. This is a great place to vent, both for the wisdom of other Weggies but also to ease up on the people around you, for sure. Or around me, I should say!

About the feet - my daughter (the Weggie) had neuropathy in her feet fairly significantly, one more than the other. It was pretty fascinating during her first physical therapy appointment after her initial diagnosis, to watch the therapist gently press with a safety pin on the bottom of our girl's feet, one at a time. Our girl couldn't see what was going on, and on the foot affected the worst our girl couldn't feel the difference between the sharp pointy part of the safety pin and the rounded end.

My understanding is that the neuropathy could be caused by the WG or the WG medicine. Also her feet hurt due to loss of muscle tone. Therapy helped but there is some lasting damage even though she didn't have it as bad as some other WG patients they had seen. Good quality shoes are important now, and she uses a wheelchair for long days at an amusement park. Otherwise, she copes very well. Best wishes.