Quick question on pain..

[Joni]

My son went to hospital ER tonight with severe pain in left leg. I don't know how to post pictures, but he has a rash on his leg , which is new. Dr's. on call has given him 2doses of pain meds that hasn't helped much. He starts infusion of chemo on Monday to try to get this GPA under control. He has been on Cytoxin which he wasn't responding too. Can anyone help answer my questions.. I'm his Mom and I'm trying to understand this damn disease.. Is the rash from Wegeners? Is pain associated with this?

[drz]

GPA or Wegs can cause many different symptoms including pain and rash. It is often unpredictable as how it manifests itself can vary from person to person and also from time to time. Wegs should always be considered as a possibility for any symptom although many symptoms are often caused by reactions to the meds we are given and Cytoxan (CTX) can cause many reactions too as do other meds. So some times it is very difficult to ascertain the actual cause of a symptom. Some times it is the interaction of several meds and the Wegs activity in our bodies. And the most sage advice one of our deceased members often repeated was just because you have Wegs doesn't mean you can get something else too, meaning a new medical issue or problem.

[debra]

Joni, hello. Happy new year, with health... For me the answer is both, yes. Roaming pain for me, but always in my legs. Roaming through my arms and shoulders. Like burning and pain... Rash, I've had a few, but not bad, like tiny pen dot marks, red. Not raised, just like taking a red pen, and poking some dots. My symptoms are all without any meds, so I can't blame anything..... Not treated, but working on it..... Still... Best of luck, Joni, with you're son. Deb.

[Birdie]

I'm his Mom and I'm trying to understand this damn disease..

Understanding begins with the most basic concept of Wegener's, it messes up mitosis (cellular division). The resulting cells (new/messed up cells) are often "granular", and form in groups from a few to many thousands. Any place where mitosis occurs, which is almost every part of the body, can be effected by Wegener's. That means it can cause just about any symptom.

Pain which appears suddenly, as opposed to becoming a problem over weeks, is often very localized, sharp and severe, like a pin stuck into a nerve. Then it passes for a while, till the next pin/pain. That's an indication of very active Wegener's near or in the nerves. I got instant relief from that and began healing within 5 hours of starting 80 mg of prednisone.

The rash could be from anywhere, including Wegener's.

I'm guessing that you are a bit frustrated and lot concerned. The best advice is... study! The best place for that is right here.

[Joni]

Drz, the Dr's took him off of Cytoxin a couple of weeks ago and lowered his prednisone. He is currently taking prednisone, bactrim, and levoflaxacin. Monday he has his first infusion of Rituxan.. Which is scarey! That's the next subject I'm trying to get knowledgable on. In the ER last night, he was given 2 doses of morphine, which brought pain down from a 10 to a 7.. I talked to my daughter in law today. She told me he was still in a lot of pain but the meds were helping him at least sleep.. I pray there is no new medical issues, this one is making my head and heart hurt as well!

[Joni]

Birdie, Yes! This is a great place to learn about Wegeners.. My next course of learning is going to be on Rituxan.. His first infusion is on Monday.. So it's going to be a crash course!

[Pete]

Birdie, Yes! This is a great place to learn about Wegeners.. My next course of learning is going to be on Rituxan.. His first infusion is on Monday.. So it's going to be a crash course!

Hope this helps you get up to speed.

The first rtx infusion will probably last 4-5 hours. It's given slowly so that any allergic reaction can be identified and treated quickly. Before starting rtx, your son will be given an IV steroid (usually solu medrol) and an antihistamine (probably Benadryl). Subsequent infusions will follow the same drug protocol, but the treatment will probably last about four hours.

Side effects are generally minimal. I was a little tired the day after, but was able to do normal activities.

Hope all goes well for your son -- and you!

[sbryan1]

As everyone has said, Wegeners is a very different for everyone. However I did not respond to Cytoxin either. After 7 months with no improvement I had my first of four rounds of Rituxin. It worked and put me into remission for the last 6 months. As for the rash and random "prickly" pain I also have had both. Birdie's discription is spot on. Rituxin can be scary but for me was a life saver. Don't forget to have him hydrate well and inform the nurses if he feels any (and I mean ANY!) shortness of breath or itching. Reactions come quickly but the nurses should be ready in case they do. I did have a reaction on my first infusion, shortness of breath, they handled it and I didn't have another one for the next three. Since oral maintainance medications did not work for me I have An infusion of Rituxin every 6 months. I go in Tuesday for my maintainance infusion. I feel fine after infusions generally, maybe somewhat tired the first day of so but so much better afterwards. Good luck to your son.

[drz]

Drz, the Dr's took him off of Cytoxin a couple of weeks ago and lowered his prednisone. He is currently taking prednisone, bactrim, and levoflaxacin. Monday he has his first infusion of Rituxan.. Which is scarey! That's the next subject I'm trying to get knowledgable on. In the ER last night, he was given 2 doses of morphine, which brought pain down from a 10 to a 7.. I talked to my daughter in law today. She told me he was still in a lot of pain but the meds were helping him at least sleep.. I pray there is no new medical issues, this one is making my head and heart hurt as well!

We often say Wegs (GPA) is wild roller coaster ride with lots of ups and downs but eventually for most of us things do slowly get better and we usually get better too at managing the Wegs and the ups and downs. Learning patience is also one of the benefits of coming down with Wegs along with learning to be more flexible.

I don't know if it is true but one doctor once told me that those with the most serious cases often seem to have the best recovery too. If true, it might be cause the worst cases get the most aggressive treatment and thus the best remission. And many on here have done some amazing things after being diagnosed with Wegs. Best wishes for better health soon.

[Joni]

Debra, thanks for responding to my rant earlier. I do appreciate it. I talked to my son earlier this evening and asked him about his pain. He also said his is like a burning pain that hurts like he**!. As a mother I cry, for there is nothing I can do to make it better but to pray. He told me he has more of the rash on his other ankle and it is swollen. I really hope this next treatment regime will help make it go into remission.. His daughter, my sweet Granddaughter, told me the other day, "that her daddy was just a little sick" I had to hug her to hide my tears...I told her.. Yes, he will get better!