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 :sad: 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..:crying: 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!

[Joni]

DrZ, I used your quote tonight with my son. I told him to read about his first infusion because knowledge is power.. I also told him to check back in to this forum and read some of the post about Rituxin. I have learned many things from all you wonderful people in this forum! Thank you all!

[Joni]

Thank you sbryan1, I will pass on this information to him. I was reading earlier on the medicine page of Rituxin, side effects and what can happen with infusions.. Yes it scared me! Thank you for your input on your treatments! Do they Dr's tell you to stay away from people who are sick while doing your infusions.. He has 2 daughters who go to preschool and daycare, which I'm afraid will expose him to all kinds of foreign germs being brought home.. Chicken pox, flu, colds... Will his body be able to fight these germs off? I'm happy for you that your infusions are working well for you! May you have a very healthy New Year!

[Joni]

Thanks for your input Pete! It gave me an insight of what he will sort of be going through. He has this infusion done at the Cancer clinic in the hospital. Is he allowed any visitors to be with him? His wife? His mother?
I am so very thankful for the kind people like you in this forum to share their experiences with me, so I can better understand this disease. Happy, Healthy New Year to you!

[debra]

Joni, you're very welcome... I know how hard this must be for you... It makes you feel almost helpless, and not understanding this sickness, just adds to the frustration... The doctors and what you've said, seem to know what their doing, so feel better knowing this, as he is at least being treated. This alone is tuff to get, trust me... Joni, keep praying, and I am as well... Please keep us posted? Best to you, and you're family.... Deb.

[Pete]

Thanks for your input Pete! It gave me an insight of what he will sort of be going through. He has this infusion done at the Cancer clinic in the hospital. Is he allowed any visitors to be with him? His wife? His mother?
I am so very thankful for the kind people like you in this forum to share their experiences with me, so I can better understand this disease. Happy, Healthy New Year to you!

I got my rtx at one of the OSU infusion sites. My wife usually went with me. We had a personal TV, they brought us snacks and bottled water, and they had a good wifi hot spot so I could stream music or TV programming on my phone. I would like to think that most infusion centers are bright, cheerful places given that most of the patients there are so sick. The staff at OSU was really gracious.

[Birdie]

I would like to think that most infusion centers are bright, cheerful places

I have been (many times) to six different infusion centers and they were all terrific. One was individual little spaces with privacy curtains, the others were big open rooms. A friend drove my wife one time and brought one of the parrots, thinking he would wait outside in a park, they invited her (the bird) to come in and hang out. She played with the patients for several hours.

[debra]

I agree, they are cheerful. Though I was there for a acth stimulation test, others were all there for chemo. The place was great, the nurses also. They all had TVs, already, that you just pull down. Knowing this place, they have individual computers. It was pretty amazing there..... Deb.

[Joni]

Thanks Deb, I will keep you posted! This seems to be my go to place when I get overwhelmed reading all the stuff on the Internet. Here I seem to get truer facts and opinions from real people who have dealt and are dealing with this.. My screen has had many a tear fall on it from reading. But here somehow I feel comfort... Thank you everyone!

[debra]

Joni, its a pleasure... Please keep us up to date, when you can.. We are all family, and now, you also... I understand the tears, oh boy do I ever..... Best of everything.. Deb.

[Pete]

Thanks Deb, I will keep you posted! This seems to be my go to place when I get overwhelmed reading all the stuff on the Internet. Here I seem to get truer facts and opinions from real people who have dealt and are dealing with this.. My screen has had many a tear fall on it from reading. But here somehow I feel comfort... Thank you everyone!

I'm glad we're helping you.

[Birdie]

This seems to be my go to place when I get overwhelmed reading all the stuff on the Internet.

Always keep in mind that what you read from medical sources has been lawyer'd into the dirt. Here you can see for yourself how actual patients have handled... uhm... well... whatever you need to know about.

[debra]

Joni, I forgot, about the studies Birdie is referring to. Pay no attention to these! According to these studies, I'm not here anymore... My time was up, because I'm not yet treated... So ya, take it all with a grain of salt.... Deb.

[JenG]

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 :sad: 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..:crying: Is the rash from Wegeners? Is pain associated with this?

Hi Joni,
I have had a red, hot painful rash on my lower legs and feet with swelling so bad that I couldn't walk. I believe this to be erythema nodosum. My was biopsied and also named panniculitis (an inflammation of fat cells below the skin). Mine was associated with a flare of Wegener's that was initially treated with high doses of prednisone which took care of my swelling and rash. I went through this in October 2014 and still have residual "stains" on my legs that look like bruising but are just what I consider as war wounds. I forgot how painful this had been until I read your post! I did not take any pain medication but did use crutches as it was so painful to walk.
I hope your son is able to find relief--not only in pain meds covering up his symptoms--but through actual treatment. The rituxan infusion takes a while to kick in and take effect, he may need a higher dose of prednisone while he is waiting for its full effect.

to answer your other questions, I would think the infusion center would permit visitors, mine always does. As for reactions to the infusion, he is being infused at a center well prepared to deal with reactions. They should premedicate him with tylonol, benedryl and a high steroid dose. I tend to have many drug allergies and did have a minor reaction to the infusion. I was able to catch it--my throat and windpipe started itching, heart racing, etc. The nurses stopped the infusion, ran more benedryl and a saline flush until I felt better. They restarted the infusion at a lower rate and I was fine. I have had several infusions since and seem to be doing much better. just encourage him to speak up if he feels anything different/funny during the infusion. My understanding is that most patients tolerate the treatment without any complications (again, let me remind you that I tend to be very allergic to meds).

good luck, keep asking questions and keep reading!!!
jen

[MikeG-2012]

I have been (many times) to six different infusion centers and they were all terrific. One was individual little spaces with privacy curtains, the others were big open rooms. A friend drove my wife one time and brought one of the parrots, thinking he would wait outside in a park, they invited her (the bird) to come in and hang out. She played with the patients for several hours.

I used to have a Golden Retriever who was a therapy dog. But, I've never heard of a THERAPY BIRD! Very Interesting!

[Birdie]

I used to have a Golden Retriever who was a therapy dog. But, I've never heard of a THERAPY BIRD! Very Interesting!

Hey, on topic for this thread, in a way... no doubt that pain becomes unbearable at some point. That pain threshold can be varied by distractions like a friendly critter entertaining you. Two of the birds I know are registered with a group called Paws to Read, they volunteer at the library on saturdays, helping kids learn to read.

[debra]

Birdie, hell there, once again... This is amazing... Animals rock... People? Some.... Deb.

[debra]

Oh no! No its hello! I'm so sorry!!!!

[sbryan1]

Joni, yes with all GPA medications like Rituxin, it can lower your immune system but it shouldn't disrupt your life. I personally use a lot more hand sanitizer (it's in all my cars, and my purse) and use it often. You get into a habit of wiping down grocery carts and the like. I don't go out of my way to shake hands or hug strangers, or even open doors, however sometimes it's unavoidable. Just keep the Purell handy. Secondly I do not go out of my way to stay isolated from others. I just do my best to keep a reasonable distance in a coughing sneezing crowd or keep the grandkids from kissing me if they're sick. I have not been sick in the last year! My doctor told me that washing your hands often and using reasonable cold flu hygiene is enough and it has proven good for me.

As someone said to me when I was first diagnosed, "Continue to live your life and don't sweat the small stuff, you'll go crazy!" I was terrified of getting sick at first and with these minor changes all of a sudden it became routine and I no longer think about getting sick. Tell your son to hang in there.

Sbryan1
dx 12/14

[Joni]

Good evening Forum Family. I have an update on my son, Kyle, first Rituxin infusion.. He had only 1 reaction and it was early into infusion.. 1hour. His head started getting red and itching horribly. They stopped infusion gave more Benadryl, waited 30-45 minutes and started slowly again.. No reaction this time and 6 hours later he was finished. Scheduled next appt. for 2weeks from now then in 6 months 2 more.. I talked to him this evening and he was tired and sore. Thanks to you all for your knowledge and support.. It feels so great to have your wisdom on my side so I feel like I do know what to expect.. On a great note to end this with, my sons rheumatoid Dr gave him a 10,000.00 credit card to help pay for any upcoming infusions that his insurance does not cover! We are breathing again in Kansas! :thumbsup:

[debra]

Joni, wow... So awesome! I'm happy for you and you're son.... Joni, I hope you continue to hang out... Best of luck... Deb.

[Joni]

Yes Deb.. I don't plan on going anywhere! I wish my son would sign in and see these messages.. I have taken screen shots and had him read them. I even suggested to my daughter in law to join. I told her there were lots of knowledgeable people in here! We will see! Thank you so much!

[debra]

Joni, I'm glad. You're very sweet. I love you're posts... Maybe in time, you're son will join. I'm sure its a lot for him right now..Again, Joni all the best to you guys.. And see you around..... Deb.

[drz]

Yes Deb.. I don't plan on going anywhere! I wish my son would sign in and see these messages.. I have taken screen shots and had him read them. I even suggested to my daughter in law to join. I told her there were lots of knowledgeable people in here! We will see! Thank you so much!

One of my best memories when in ICU with Wegs was when my daughter would read me a couple messages people had sent. I am sure he appreciates it.

[debra]

Hello, Drz! Ah, the simple things like this, help so much.... Drz, healthy and happy new year! Drz, you dont visit me anymore....... Deb.

[MikeG-2012]

Yes Deb.. I don't plan on going anywhere! I wish my son would sign in and see these messages.. I have taken screen shots and had him read them. I even suggested to my daughter in law to join. I told her there were lots of knowledgeable people in here! We will see! Thank you so much!

Everyone deals with tough times differently. We all know that this is THE place to go, but for some of us, it takes time to deal with the diagnosis and the lifestyle change FIRST, and then settle in and join. I read all the doom and gloom for about a month on the Facebook page, and I wasn't interested in that when I was diagnosed. So, I waited over a year before joining any other groups. I just had to take care of ME after diagnosis, and when I was ready, I started reading, joined and even started posting. Now, looking back, I wish I had come here FIRST! (-8

[sbryan1]

Yes Mike I was the same way. My husband found this forum (LovinLife) right after I was diagnosed in Dec 2014. He posted my story, but I wasn't ready to hear it all. i skimmed the blog on his acct and in May decided I needed to join and be me. Everyone story is different but there is such great support and great information. Joni I hope your family feels free to join when the are ready - hard to fight a scary monster alone.

[Joni]

Good evening Forum Friends, when does the roller coaster of this damn disease end? Yesterday before my son had his first infusion his Dr. did some tests. There was blood in urine, he is thinking Cytoxin caused damage to kidneys.. They are going to do another test next week when he has his 2nd infusion. From conversation with my son, if I understand it, when they took him off Cytoxin his Wegeners started to Weg out and got to full blown mode. He went to ER on January 1 because of unbearable pain, rashes, swollen ankles, could hardly walk or hold drinking cup. He left infusion center thinking 1 more infusion until July and then 2 more. Now with the results he heard about today.. He is going to be taking 4 of them and in July will be taking 4 more.. He has previously had only lung, sinus's and eye issues, now kidneys! What do I need to expect now? My son is a member on here. Kvincent13 is what his name is... Thanks

[me2]

Hi Joni,
From my experience I would be more suspecting that the blood in the urine is caused by Cytoxin damaging the bladder. I think a urine test can tell if the source is kidneys or bladder.
He should be getting Mesna with his Cytoxin to protect his bladder and prevent bleeding. The Mesna is extremely important.
I had bleeding and extreme pain using Cytoxin without Mesna. I can't believe they even still give Cytoxin without Mesna.
Then, after using Mesna it was smooth sailing.

I'm not quite clear what the course of events is for your son. You say the doc did the test BEFORE his first infusion but then thinks the blood is caused by Cytoxin. He must have had previous infusions? and this is the first of the latest infusion?

[debra]

Joni, hi.. wegeners is nuts. Not sure if its wg, or the med, like me2, posted but which ever it is I'm sure they will figure it out. Better to have caught this early, so.... Joni, take a deep breath, take some time for you, and know things will work out. Glad you're going to keep posting, Joni... Best to you guys... Deb.

[Joni]

Thank you Me2 for responding and for making me reread my post! I see now I was very unclear, could have been the anger, tears, the lack of knowledge and poor note taking while talking to my son. I do believe Kyle said bladder. Yes this was his first infusion of Rituxan. He was diagnosed June 2015 and that is when Dr. prescribed him pill form of Cytoxin.. Along with a handful of other drugs.. Not sure what they all were. But a couple of weeks ago he was only taking 3. Bactrim, Levoflaxin and prednisone.. From what I understand the Wegeners was not responding to it, Cytoxin, and he was taken off of it approximately a month ago.. That is when scheduled first appt. for the infusion of Rituxin. I'm sorry I was unclear..

[Middlesista]

How is his serum creatinine?

[Birdie]

From my experience I would be more suspecting that the blood in the urine is caused by Cytoxin damaging the bladder.

I had massive bladder damage from cytoxin. It took about a year and a half. Several doctors were surprised at how well I tolerated the cytoxin up to that point, until I explained how much water I had been drinking. Trust me, it was a vast amount of water. Enough to fill and flush my bladder every two hours, 24 hours a day for 18 months. All the warnings with the pills, the hospital when given the first dose, and everywhere I researched all told me to do this. I actually did it. I don't believe I would be alive today had I not done it.

[debra]

Im glad you did this too Birdie. Real glad you're here. Always helpful, and you're twist of humour, is amazing. A true asset to this group. You, leave here, and you'll have a bigger issue than the weg dog! Deb.

[MikeG-2012]

I had massive bladder damage from cytoxin. It took about a year and a half. Several doctors were surprised at how well I tolerated the cytoxin up to that point, until I explained how much water I had been drinking. Trust me, it was a vast amount of water. Enough to fill and flush my bladder every two hours, 24 hours a day for 18 months. All the warnings with the pills, the hospital when given the first dose, and everywhere I researched all told me to do this. I actually did it. I don't believe I would be alive today had I not done it.

Holy toilet breaks Birdie-Man!! Biff, bam, WOW!!

[drz]

I had blood in urine several times when on CTX and it was related to bladder infections. I also drank lots of water and used the toilet frequently. A scope of my bladder months later indicated it still looked OK. The urologist said CTX often makes the bladder look like hamburger inside. The research literature doesn't agree on how often CTX users should be checked for possible bladder but I am going to discuss this issue with a urologist next week.

[debra]

Drz! Hello... Nice seeing you Drz... Miss seeing you, on the crazy side Drz..... Deb.

[Birdie]

Holy toilet breaks Birdie-Man!! Biff, bam, WOW!!

Kapow? I aint-a kiddin either... That's what is actually called for with cytoxin. Completely flush it out of your bladder every two hours.

[Birdie]

I am going to discuss this issue with a urologist next week.

I saw one last week at the VA, he was not so good, could hardly understand him. I'd be very interested in the result of your conversation. I've been off it for over two years but wondering what I have to look forward to as a result of 18 months at 150 mg.

[Joni]

I hope your doing fine now drz! Thanks for info!

[Joni]

I had read also, drink drink drink and drink more water than ever.. Clean that Cytoxin out of bladder! Every time I would talk to my son, I would ask.. Are you drinking lots of water? Is your bladder damage healed? Does it heal!

[Joni]

Middlesista, I asked Kyle how it was.. Then he asked me What is it? I told him that on our forum you had asked.. I had read on here someone had said to get copies of blood tests results or test results.. I asked him if he was getting copies..and of course he wasn't. I really hope I'm not overstepping my boundaries of getting information from him about his disease. I'm just really trying to understand it and what is happening to him.. Also, for you or anyone else who reads this post.. Has anyone else in your family had any other kind of autoimmune disease? I have psoriasis which is one and I wonder if any of this is linked together.. I believe in my crash courses of chromosomes over the summer, I read that both diseases are on like chromosome 6??? I wrote it down in one of my notebooks that is somewhere in my, getting back to normal after Christmas, house...

[debra]

Joni, hi.. yes on autoimmune disorders in family. My mom, and brother both have sarcoids... I have a different theory I guess than most here as to why. After this all with me, just a couple months of breathing it in 24/7, then getting sick, and never being sick a day in my life, except the flue, once at thirteen years old, I know what happened to me, and what I'm dealing with. My mom did ceramics, and also used heavy duty cleaning products. My brother, I'm not sure, except maybe something in the military. He's an ex marine, so.... Joni, again I wish you guys the best. Things will improve! Deb.

[debra]

Sorry, I'm tired. No sleep again. Joni, mine was silica, maybe you know this... My theory being different, is I don't believe the majority of wegeners, is hereditary, or viral. Maybe a gene, is involved, but to me its definitely being exposed to a toxin, then you're immune system going nuts after trying to fight it off. Then starts attacking body parts seeing you're body as the toxin. Deb.

[Birdie]

I had read also, drink drink drink and drink more water than ever.. Clean that Cytoxin out of bladder! Every time I would talk to my son, I would ask.. Are you drinking lots of water? Is your bladder damage healed? Does it heal!

Yes the cytoxin damage heals but it is a slow process. I believe I had it far worse than most. I spent a month in the hospital followed by six months of recuperation. It is the most severe pain you can imagine.

[Birdie]

I don't believe the majority of wegeners, is hereditary

Wegener's is not heriditary, it is not any sort of genetic disorder in any way. While medical science won't declare a specific cause, one of the few facts that are agreed upon is that it is not heriditary. The cause is 100% external. Your gene pool makes a difference in the likelyhood of getting Wegener's, but does not cause it.

[debra]

Birdie, hi. Agreed... Toxins, toxins.....Then the immune system is activated, and in an attempt to save you, starts seeing you as the enemy.... Deb.

[Joni]

Thank you birdie and debra, I truly appreciate your input! I can now feel relieved I'm not the cause of this!! Now my mind is wondering, maybe you both can put it at ease once again... In either 2008 or 09, my son, said child Kyle, became sick with what the Dr's. told him was the flu.Monday. Sent him home as week went on, he became sicker.. Notified Dr again on like Wednesday or Thursday, once again was told flu.. By Saturday he was not getting any better, worse if anything went back to ER this time, did blood work. White blood cells were off the charts.. Brought him to bigger hospital by ambulance and found out his appendix had ruptured and had been leaking into his body for maybe 3 to 4 days.. Long story short.. A month later, many operation, a few less feet of bowels, a couple of colonostomy bags, he was released from hospital. If this Wegeners is caused by toxins, that just might have done it??

Birdie your a very wise man, I think you need to open up shop and have patients come to you for advice and help!
Thanks guys!

[debra]

Joni, hi. In my opinion, only the or my answer, is absolutely not. What I meant was inhaled toxins, or finding their way, via another soarce, into the body... Joni, know for sure youre not responsible, nor is he. I know how you must be feeling, and its hard, but no. Be gentle on you're self Joni. I wish I had someone who cared the way you obviously do... You're son is lucky to have you, Joni.... Deb.

[debra]

Joni, sorry for the typo! Mine seem to never end! Deb.

[Joni]

debra, you are a very caring person yourself! As I read your post, You worry when people aren't on here, you always have a kind word for the people who posts in the forum, yes even mine. Your very positive considering.... You remind me of our schools Social Worker! You, considering all that's going on with yourself, have so much caring for others. I wish I could give you some of my sleep time, I seem to do too much of it. Daily after school for 2 - 3 hours, then at night at least 6 - 7 hours.. I can't imagine how you do it!
Never give up and never stop your positive attitude! Your an Angel on earth...

[debra]

Joni, thank you for this. It means a lot to me... Not a lot of this in my life, that's for sure... I do care, and you're very sweet, Joni... I am praying for you guys, Joni. Deb.

[mishb]

I was so thankful that blood was found in my urine.......

When I was diagnosed by my ENT, he didn't want to start me on any other medication. I was already on some stuff for Rheumatoid Arthritis.
He wanted to send me to one of the big hospitals in the City, that has a proper vasculitis outpatients centre and let them do the treatment protocol
It turns out that his son is an ENT at this hospital.
Anyway, it took 6 weeks to get in and then the ENT there wanted to do a sinus biopsy to get a proper confirmation. which thankfully was positive.
This ENT department still didn't want me to start any other medication (than the RA stuff I was already on) until I saw the Rheumatologist, which was another 4 week wait.

When I finally saw the rheumatologist, he ordered xrays and bloods and urine test, all of which I had been doing each week, and this time there was protein and blood casts in the urine test, there and then they put me straight into hospital and started the pred and MTX straight away.

Why am I thankful there was blood in my urine test - because WG was finally taken seriously and I started to received the correct treatment for it, and my kidneys are working just fine, not 100% but not a WG issue.

I am now in remission, and Joni, this is what is going to happen for your son too. His treatment is going to work, and remission will not be too far away.
Drink drink drink, water water water, and go to the bathroom often. Just as Birdie says.

All the best for all up and coming infusions

[debra]

Michelle, hi... Couldn't sleep as usual, so... Michelle I seriously just marvel at how different things are there verses here! Oh my goodness its just nuts! I thought blood, actual visible, with a high fever with new symptoms, would finally get me into something for treatment, but no! Even with the new added lung pain for a month. No, nothing... My labs clearly state the abnormalitys, and next to color this last set says amber. Amber urine? I guess I'm just venting here, and a little jelouse as you're health care there seems to Realy rock... Michelle, glad you're well. Joni, stay vigilant, and remember you're son is getting treatment pretty fast, so this is Realy good.... All the best. Debra.

[Birdie]

Drink drink drink, water water water, and go to the bathroom often. Just as Birdie says.

Hopefully I'm starting a trend. It's poison, literally, poison. It's done it's job once it's in your urinary system. Get it out now, and later, and keep doing it. One of the most important things a patient is entirely responsible for doing. Broken record...

[mishb]

Hopefully I'm starting a trend. It's poison, literally, poison. It's done it's job once it's in your urinary system. Get it out now, and later, and keep doing it. One of the most important things a patient is entirely responsible for doing. Broken record...

Definitely not a broken record, it needs to be repeated over and over again, for all newcomers.

It sure beats the alternative :sad::crying:

[Middlesista]

Middlesista, I asked Kyle how it was.. Then he asked me What is it? I told him that on our forum you had asked.. I had read on here someone had said to get copies of blood tests results or test results.. I asked him if he was getting copies..and of course he wasn't. I really hope I'm not overstepping my boundaries of getting information from him about his disease. I'm just really trying to understand it and what is happening to him.. Also, for you or anyone else who reads this post.. Has anyone else in your family had any other kind of autoimmune disease? I have psoriasis which is one and I wonder if any of this is linked together.. I believe in my crash courses of chromosomes over the summer, I read that both diseases are on like chromosome 6??? I wrote it down in one of my notebooks that is somewhere in my, getting back to normal after Christmas, house...

you are advocating for your son - I would do the same thing and as long as he is on board it is a good thing.

Yes - my family does have other auto immune issues. celiac , psoriasis, polymyalgia rheumatica come to mind. Read study where 3 people in one family had it but most info will say not inherited. Still need to know a lot more about this disease

[debra]

Joni, hi. I know I mentioned about other autoimmune issues, so I won't repeat that, but yes get copies of the labs!!! If he's not, not sure you can, since he's over eighteen. These labs, copies are you're right. It's the law. Many times, things are overlooked and you will be the one to spot em. Doctors aren't perfect, and make many mistakes so... Also you/ he can spot upward trends, downward trends by comparing the past labs, ect. Good luck Joni... Deb.