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PJ2010
08-28-2014, 07:01 AM
Just had my six monthly tests and appointment with my specialists and I walked out feeling like it's all in my mind.

This idiot doctor tells me all my blood and urine tests are normal and my X-rays show no signs of infection. He asked me who diagnosed me and how was the diagnosis confirmed. All this information is documented in my files and he obviously couldn't be bothered to check.
I said angrily that they did a biopsy on the pseudo tumour behind my eye that was progressively sending me blind.

After nearly 5 years of living hell with this disease and this quack was trying to throw doubt on my diagnosis. What a waste of time.

I complained to him about the infection in my sinus. About the great chunks of green and yellow coloured scab material I have to blow from my nose constantly. His comment was I have no infection and smoking does that.

I told him the night sweats have returned and my eyes are so sore. I asked him if something might be done about my hearing which has noticeably and recently got worse. I told him my taste and smell is gone. He has ignored all this.

I recently tested positive to an FOBT test showing I have blood in my stools. I'm having no luck in getting a colonoscopy. I asked him if he could fast track this as I've read WG can cause bleeding from that area. He said that's rubbish. That WG doesn't cause bleeding from the bowel. Again he did nothing.

In the last week I'm noticing a lump growing rapidly on the side of one nostril. I had this happen when my disease was active.

Im getting to to the point where I'm giving up on the medical system. I think to myself that it's probably better I cut ties with these idiots that I think might think I'm a hypochondriac. Just let the disease go for it and deal with the consequences then. :(

Jaha
08-28-2014, 07:25 AM
PJ,
I am sorry that you are having to deal with poor healthcare for such a serious illness. I have also been dismissed by a specialist, when I know that issues really need addressed. You need to get to another facility and get some immediate help or go straight to the administration about this doc. We know our bodies better than anyone and have had many bad situations to deal with, it is hard to believe that doc's would just pay you no mind. Please go seek help elsewhere, you have come to far to give up now. Best wishes to receiving the care you deserve.

loisann11
08-28-2014, 07:56 AM
Do not give up, consequences are too great. I would find another Dr. I have been told that kidney or lung biopsy is the best but those organs have to be involved for them to work. My husband and daughter thought I was crazy when I had those "green chunks" in my nose. So glad you mentioned it and now I know I wasn't. They did go away after I was diagnosed and treated. I did have very minor kidney involvement that I didn't even know about it and had the biopsy done on that. Have you had a full set of blood work done? I would guess yes but I know my creatinine level and a little blood in urine is what gave it away. Stuff you can't see but is there. I see a kidney specialist for treating my wegeners and he really knows his stuff. I also had problems with my eyes, red, watery, itching, scratchy. Turned out to be side effect or the prednisone and now a lot better once cut down my dose. Most all of my problems have turned out to prednisone side effects. Not sure about all the stuff you have done so far, but don't give up. Find someone who knows about this disease and go to them. Good luck!!

Wegetarian
08-28-2014, 09:18 AM
So sorry to hear that. Its awful if you can't trust your docs. Is your PR3 level low, and was it low or negative when you were diagnosed? Mine was never really high, and the rheumy I last talked too said it wasn't all that reliable in measuring my disease activity, but I guess for many people it will give away if a flare is going on.

I actually had the opposite happen to me. I was diagnosed last summer, but I only had Wegs in my nose and I guess if you look at the strictest requirements for diagnosing Wegs I wouldn't have met them as I guess the nasal biopsy wasn't conclusive. So was hoping maybe I really didn't have Wegs when I was feeling so well 8 months later. Well now it attacked me in the kidney, lungs and throat and the kidney biopsy proved wegs so at least I'm not uncertain anymore. Sigh.

But please push for another doctor instead of just waiting for it to get worse.

PJ2010
08-29-2014, 01:27 AM
Thanks you guys,

I don't quite understand all the figures. Two weeks ago a dr said my ANCA levels were 200 in the positive and that that's what they measured when the disease was at its worst 4 odd years ago.

The new results Anti-Myeloperoxidase AB (MPO-ANCA by Bioplex): 5.1 A1 (normal less than 1).
The PR3 ANCA showed a negative result.

All I know is that my diagnosis was a result of five days in hospital with intense and intrusive testing at the peak of the inflammation. The biopsy sample was from inflamed tissue behind my right eye. They made an incision in my top eyelid and somehow got behind the eyeball.

I have since put in a complaint to the hospital. I rarely feel like I'm being treated in a correct manner. They gave me a copy of all the tests done. Everything looks ok as far as I can ascertain. Even though the tests show things to be ok why is it that I feel like I do? They say this disease is always active and it continues to go through its course.

In other words, regardless of these tests the disease progresses continually to its eventual destructive outcome. Is that true?

Reading through some of the scientific publications I saw where upon the death of some WG that something like 30 percent of sufferers showed significant heart disease caused by WG. They didn't die from that but eventually it would have taken its toll.

Can anyone clarify this? Does this disease stay on course and slowly keep on damaging our bodies?

Sorry if I sound morbid but these are the kinds of questions no one seems to answer.

Dirty Don
08-29-2014, 05:01 AM
I'm not sure I can dispute the theory of the disease always eating away at us, BUT the disease can be controlled, is controlled more than adequately for most peeps if they get the correct help in time...that's a huge issue. I don't know what your options are, but I'd fire those docs just for alluding to our mortality in such a way to you. There are many instances on here of people who have borne children, lived into their 80s...and so on. Those docs are wrong and have no right to frighten you like that. Keep us informed.

PJ2010
09-02-2014, 06:53 AM
I've received a response to my complaint from the hospital re my concerns regarding the management of disease.

The Clinical Director of Internal Medicine has reviewed my concerns and acknowledges that this has been a very distressing experience for me and has apologised that I found Doctors responses and lack of continuity disappointing.

It was stated ' In order to provide consistency in care we have flagged within your medical record that future management should be done by the Senior Consultants when available. '

I hope this will be the answer to better treatment. Unfortunately, even some of the Senior Consultants have been less than professional in their approach to me and my disease.

The Doctors I'm seeing are actually kidney specialists. The last dr I saw, after I told him of my health concerns said ' at least your kidneys are ok'.

Debbie C
09-02-2014, 10:04 AM
PJ, I am also sorry you are going through all this crap with your drs.,especially when you are not feeling well. There are alot of Aussies on this site ,I am sure some will chime in and maybe steer you in the right direction to get proper medical help. I understand there is also a facebook page for Aussies you might want to look at. Best of luck to you in getting the proper care and in a timely manner.

BarbW
09-02-2014, 02:22 PM
Is one C - anca and the other P-anca?

PJ2010
09-02-2014, 11:32 PM
Barb, I don't know. What I wrote was exactly what was on my copy. Very confusing.

chris.wg
09-06-2014, 02:01 PM
My main question is are you seeing a Rheumatologist. Its good to see doctor's that treat the area's that have been affected. But I am a firm believe in a rheumy. As this is a autoimmune disease. That is their area of specialty. <even if some aren't not quite qualified for it.> A good Rheumy will go a long way working with your other specialists if you are not seeing one now.

tigerleah23
09-07-2014, 08:03 AM
I have had numerous horrible experiences with Dr.'s that don't know a thing about Wg. I have gotten to the point where if they seem like they don't know what they are talking about, I demand another Dr. My life span is too short to spend it in appointments half the time. Or just waiting for someone who can treat me. It also makes me angry when they tell me I should feel a certain way, when I don't. WG affects the lungs, kidneys, joints, bowels, sinus, and the vascular system. Any soft tissue. That Dr. seems to not care. My advice is find better care. Look into people who have treated the disease before. Even if you have to drive further away, good care is worth it! You matter, don't let anyone convince you otherwise. This disease is certainly manageable. I have reached almost 10 years and look forward to at least 20 more!

PJ2010
09-08-2014, 01:44 AM
Thanks Tigerleah.

Ive always stupidly allowed drs their pedestal they feel they deserve to sit on. I've always given them respect until now. After going through hell with this disease and had so much contact with so many different drs, it has finally dawned on me that the medical system is full of undertrained, rude and arrogant people that are clearly there for the money and not for the patients well being.

Many times since being diagnosed I've said to people I wish I had cancer. At least then I could expect quality treatment!!
At least then the majority of drs have a fair understanding of the disease.

A person suffering cancer would never have a dr ask them 'how do you know you have cancer?' or ignore symptoms or treat the patient for a different condition. Even the treatment for cancer, similar to the treatment we get, never would they allow a cancer sufferer to go through a year and a half of psychotic episodes due to medication and blame it on the patient.

I dont know..........
Having a rare disease is so hard.
So isolating.

When I was diagnosed I had no understanding of what to expect. When the dr held my hand firmly and told me I had WG he had a genuinely sorrowful look on his face. He was a very caring person. I thought I was in good hands until I was referred on and found the majority of medical trained people can't even treat a common cold let alone Wegener's Granulomatosis.

cjhnsn29
09-12-2014, 03:05 PM
I would find another Specialist that is with a big office or hospital and keep pushing. My internal medicine Dr is great and understanding. I have been where you are with Dr's but truly there is one out there that knows how to deal with this. Have you went to an Internal medicine Dr yet? Believe it or not my ENT was the first to diagnose WG. Don't give up. Take it from someone who felt like you. It made my WG worse and in the long run, made more problems for me and several surgerys due to giving up.

PJ2010
10-14-2014, 01:03 AM
Well, my wish has been granted. I've now been dx with bowel cancer. ��

I really didn't mean literally 'I wish I had cancer'!!!!!!

Oh well, me and my big mouth aye?

A good friend of mine who has MS told me she thinks I'm just greedy ��

Dirty Don
10-14-2014, 02:24 AM
A golf acquaintance asked me how I was doing, asked if I had had a heart attack, common among us old farts! I told him, NO, I just wanted to be different than my other heart buddies...so I went and got an AI instead...much more attention and stupid questions associated with it! I love it! NOT!

PJ2010
10-14-2014, 06:46 AM
All my working life I've been under the impression that if I work hard and save my money that one day when I turn 65 I can retire and enjoy some real life. Well I'm now 60 and I've worked hard all my life and saved a little and I now realise there is more to it than that.

The missing ingredient is health!!

I wonder how many people reach 65 without any serious health issues. Life is a bit like climbing Mount Everest. The first part is easy and the further you go it keeps getting harder and harder to the point where only a few reach the summit. :learnings:

Pete
10-14-2014, 07:31 AM
I was dxed 9 months after I retired (age 64+). First 14 months after that weren't too much fun. Since then, life is pretty good. Thanks to great docs and effective meds.

PJ2010
10-15-2014, 01:58 AM
That's good that it's under control Pete. You deserve to be able to enjoy your retirement. Stay well friend. :smile1:

daystarr8
10-25-2014, 04:30 PM
Thanks Tigerleah.

Ive always stupidly allowed drs their pedestal they feel they deserve to sit on. I've always given them respect until now. After going through hell with this disease and had so much contact with so many different drs, it has finally dawned on me that the medical system is full of undertrained, rude and arrogant people that are clearly there for the money and not for the patients well being.

Many times since being diagnosed I've said to people I wish I had cancer. At least then I could expect quality treatment!!
At least then the majority of drs have a fair understanding of the disease.

A person suffering cancer would never have a dr ask them 'how do you know you have cancer?' or ignore symptoms or treat the patient for a different condition. Even the treatment for cancer, similar to the treatment we get, never would they allow a cancer sufferer to go through a year and a half of psychotic episodes due to medication and blame it on the patient.

I dont know..........
Having a rare disease is so hard.
So isolating.

When I was diagnosed I had no understanding of what to expect. When the dr held my hand firmly and told me I had WG he had a genuinely sorrowful look on his face. He was a very caring person. I thought I was in good hands until I was referred on and found the majority of medical trained people can't even treat a common cold let alone Wegener's Granulomatosis.

PJ I have had Wegener's for 34years and counting. It can be treated I have had a 9 year healthy remission and an 11 year healthy remission. I did suffer greatly at the end of my 9 year I relapsed and started cytoxin again and in 11 months reached remission but found out I had bladder cancer then. Nonetheless I beat both!! I am about to start treatment though probably next week. I am having a flare after 11 years!!!!! I'm more worried about the toxic drugs than getting this in control. I am sorry you have had uninterested doctors for I have fired many myself. It's your life take control of it. Don't let yourself get more ill because they aren't doing their job. Find better, leave the area for treatment you won't regret it. Good luck to you.

PJ2010
10-26-2014, 04:48 PM
Thank you for your reply. Sorry your got some stuff to deal with.
I still feel lucky even though I always feel awful. Yes I'm more scared of the drugs than the disease. I hate the feel you get. I might be in some sort of remission, I'm not so positive. Just so tired all the time.
I don't say too much because for one I don't want meds and the other I think they think I'm a hypochondriac.
My thoughts are with you.

spiritscript
10-28-2014, 10:23 AM
I rarely, if ever, post. I'm too sick and too disgusted. As far as my doctors, I'm completely fed up! My labs show no Wegeners, but my pulmonologist says I have all the symptoms. My rheumatologist ignores my concerns. He just prescribed Arava a few weeks ago for my RA/PSA. I won't take it. The Methotrexate last winter made me so sick! I'm on Humira and Prednisone. My pain management doctor has started being downright nasty to me and other patients. He suddenly, after 2 years, says there is nothing wrong with me! WTH? My nose is a nightmare! Bleeding, crusting, perforated septum, burning, pain, unable to breathe, dry as dirt! And I went to a different ENT who told me that a perforated septum is not caused by Wegeners. Translation: He thinks I use cocaine? Pathetic! I hope that all of you have or find good doctors. Mine are terrible! :(

daystarr8
10-28-2014, 11:26 AM
I rarely, if ever, post. I'm too sick and too disgusted. As far as my doctors, I'm completely fed up! My labs show no Wegeners, but my pulmonologist says I have all the symptoms. My rheumatologist ignores my concerns. He just prescribed Arava a few weeks ago for my RA/PSA. I won't take it. The Methotrexate last winter made me so sick! I'm on Humira and Prednisone. My pain management doctor has started being downright nasty to me and other patients. He suddenly, after 2 years, says there is nothing wrong with me! WTH? My nose is a nightmare! Bleeding, crusting, perforated septum, burning, pain, unable to breathe, dry as dirt! And I went to a different ENT who told me that a perforated septum is not caused by Wegeners. Translation: He thinks I use cocaine? Pathetic! I hope that all of you have or find good doctors. Mine are terrible! :(

Spiritscript. I'm so sorry. That was the story of my life before diagnosis. Please travel to a nearby teaching hospital. Surely you will find better help and understand of your disease. WG is a hard one to treat only because the naked eye can't always see and the doctors are not educated. There is a good life with good control of your symptoms but it going to come from finding a more knowledgeable doctor to listen and treat your symptoms. Reach out. Go get another opinion and another one if necessary. I have everything you have going on right now too. I'm on 40mg prednisone and it's helping. But I'll need treatment soon. For 34 yrs my doctor never used the labs to confirm. It's the biopsy and the symptoms. Throw the labs out if they don't work or go to another lab they are not all equal ya know. Please reach out. Let me know if I can help you. I'm in California and I know Ucsf has a good ENT and rheumy too and possibly UCC Davis as well. The east coast has so many.

spiritscript
10-28-2014, 12:54 PM
Spiritscript. I'm so sorry. That was the story of my life before diagnosis. Please travel to a nearby teaching hospital. Surely you will find better help and understand of your disease. WG is a hard one to treat only because the naked eye can't always see and the doctors are not educated. There is a good life with good control of your symptoms but it going to come from finding a more knowledgeable doctor to listen and treat your symptoms. Reach out. Go get another opinion and another one if necessary. I have everything you have going on right now too. I'm on 40mg prednisone and it's helping. But I'll need treatment soon. For 34 yrs my doctor never used the labs to confirm. It's the biopsy and the symptoms. Throw the labs out if they don't work or go to another lab they are not all equal ya know. Please reach out. Let me know if I can help you. I'm in California and I know Ucsf has a good ENT and rheumy too and possibly UCC Davis as well. The east coast has so many.
Thank you so very much! :)

drz
10-28-2014, 01:08 PM
I rarely, if ever, post. I'm too sick and too disgusted. As far as my doctors, I'm completely fed up! My labs show no Wegeners, but my pulmonologist says I have all the symptoms. My rheumatologist ignores my concerns. He just prescribed Arava a few weeks ago for my RA/PSA. I won't take it. The Methotrexate last winter made me so sick! I'm on Humira and Prednisone. My pain management doctor has started being downright nasty to me and other patients. He suddenly, after 2 years, says there is nothing wrong with me! WTH? My nose is a nightmare! Bleeding, crusting, perforated septum, burning, pain, unable to breathe, dry as dirt! And I went to a different ENT who told me that a perforated septum is not caused by Wegeners. Translation: He thinks I use cocaine? Pathetic! I hope that all of you have or find good doctors. Mine are terrible! :(

I would go see Merkel in Philly and get his assessment and advice.

daystarr8
10-28-2014, 04:54 PM
I would go see Merkel in Philly and get his assessment and advice.

Yes go see him. I wrote him an email last week and he responded. He is the one who told me about UCSF. I looked him up after watching a YouTube that had been posted. Please contact him. Let him help you. You won't regret seeing someone who knows the disease

PJ2010
10-29-2014, 01:30 AM
Hi spirit script.
I do feel for you and others in the same situation.
Its so frustrating.
Maybe as a group could we all somehow raise the stakes a bit? I wonder if there is some way that we can raise awareness of this disease. There are so many sufferers and many with complaints like yours of unprofessional medical treatment. I should say substandard treatment. The meds they expect us to take are terrible.
Im actually dealing so much better with no meds. My disease though is not life threatening at the the moment.
I just want to feel normal.

spiritscript
10-30-2014, 01:12 AM
Hi spirit script.
I do feel for you and others in the same situation.
Its so frustrating.
Maybe as a group could we all somehow raise the stakes a bit? I wonder if there is some way that we can raise awareness of this disease. There are so many sufferers and many with complaints like yours of unprofessional medical treatment. I should say substandard treatment. The meds they expect us to take are terrible.
Im actually dealing so much better with no meds. My disease though is not life threatening at the the moment.
I just want to feel normal.
Yes, you have a great idea! As far as meds, I have many diagnoses and am on many meds. My plan 2 years ago was to address the problems, get better and get off the meds. But there is a major lack of caring doctors, resources, etc. I will type more into detail over the weekend. Again, your idea is good!!!

PJ2010
10-30-2014, 06:08 AM
I look forward to hearing more.
You know, my body just constantly hurts. I feel tired all the time.
I operate a car repair business. The work is quite physical and requires a sharp mind.
Physically, I have lost much of my strength.
When diagnosing engine problems, what's needed is a broad approach to reach a conclusion and repair.
Some times I find my brain just won't handle problems like it should.
I find sleep is my best remedy. I need at least 8 hours of sleep each night to function. My mind and body seem to demand it.
Stay well. :)

spiritscript
02-08-2015, 04:51 AM
He's nuts! Just like too many doctors these days!

spiritscript
02-08-2015, 04:55 AM
PJ

Thank you! When my pitifully small divorce settlement comes, the first thing I'm going to do is get an appt. and take a bus to to a dental university for my denture nightmare! :(

spiritscript
02-08-2015, 04:58 AM
He's nuts! These doctors are terrible these days!


Just had my six monthly tests and appointment with my specialists and I walked out feeling like it's all in my mind.

This idiot doctor tells me all my blood and urine tests are normal and my X-rays show no signs of infection. He asked me who diagnosed me and how was the diagnosis confirmed. All this information is documented in my files and he obviously couldn't be bothered to check.
I said angrily that they did a biopsy on the pseudo tumour behind my eye that was progressively sending me blind.

After nearly 5 years of living hell with this disease and this quack was trying to throw doubt on my diagnosis. What a waste of time.

I complained to him about the infection in my sinus. About the great chunks of green and yellow coloured scab material I have to blow from my nose constantly. His comment was I have no infection and smoking does that.

I told him the night sweats have returned and my eyes are so sore. I asked him if something might be done about my hearing which has noticeably and recently got worse. I told him my taste and smell is gone. He has ignored all this.

I recently tested positive to an FOBT test showing I have blood in my stools. I'm having no luck in getting a colonoscopy. I asked him if he could fast track this as I've read WG can cause bleeding from that area. He said that's rubbish. That WG doesn't cause bleeding from the bowel. Again he did nothing.

In the last week I'm noticing a lump growing rapidly on the side of one nostril. I had this happen when my disease was active.

Im getting to to the point where I'm giving up on the medical system. I think to myself that it's probably better I cut ties with these idiots that I think might think I'm a hypochondriac. Just let the disease go for it and deal with the consequences then. :(

PJ2010
02-08-2015, 08:01 AM
Thought I might throw a positive into this thread. I know I've started a huge response from so many who have had terrible experiences from the medical field but my very recent dealings with a surgeon here in the Ballarat Base Hospital have just proved to me that there are still some knowledgable and caring doctors out there.

I have just recently had my third colonoscopy in as many months to remove some large polyps from my large intestine. Traditionally, the positioning of the last big one normally requires removal by surgury of a large section of the intestine. I was aware that that procedure would have life long effects. There was also a very high risk that it may have been cancerous.

Dr. Timothy Elliott, who has his own rooms in Drummond Street, had studied this special procedure overseas. Upon coming across my case he met with me and went through all the pros and cons with carrying out this procedure.

The colonoscopy was completed with almost no problems. I was kept in hospital for 2 nights due to bleeding. In hospital Dr. Elliott visited me a number of times and for the rest of the week he was in touch often to ensure everything was right.

The nursing staff in the hospital were fantastic. As far as Dr. Elliott goes, I've never met a more caring and professional doctor in my memory. Through his expertise he has saved me a major operation that would have changed my life forever and possibly saved my life. The polyps were benign. I now have some years added to my useful life.

Why can't other doctors be like this? Even someone with a cold needs some care and attention. It makes all the difference when you know someone genuinely cares.

If anyone in medical field is reading this, please make it know that GPA is not just a cold but is a very serious and life changing disease and the poor people that are suffering this terrible affliction need extra care and attention.



mishb
02-08-2015, 04:21 PM
That is awesome news :thumbsup:

I'm glad everything worked out.

MikeG-2012
02-09-2015, 03:34 AM
Well said! And, I am glad you had this experience!! Positive news is always good news!

Congrats!

Jaha
02-10-2015, 02:34 PM
PJ, I'm so glad that you got the treatment and attention that you and everyone of us deserve. Very happy that things turned out alright with the polyps. Congrats and take care of yourself.

PJ2010
02-19-2015, 07:12 AM
Thank you all for your support.

Just wondering, I'm supposed to be in remission and taking no meds at all, but I feel so bad nearly all the time.

I wont go to the doctor because I appear to be well and blood pressure etc are normal. I would just be wasting my time.

Most mornings I wake up feeling worn out and my body aches. Many times I feel sick but not in the stomach if you
understand what I mean. I often wonder how I could feel so bad when I'm not sick. After showering I feel able to cope with the day ahead. Throughout the day my eyes become much more sore, my moods become worse, I find my concentration diminishes and I feel fatigue kicking in.

By by the end of the day all I want is to lock myself away in privacy and have my dinner. Very soon after I'm in bed. I'm often in bed by 6.30 pm and fall to sleep like I had passed out. I always wake at least once through the night. Night sweats come and go. As a result, I get out of bed and maybe have a cup of tea or maybe eat something. I stay up for a few hours and then go back to bed and as before, drop into a deep sleep within minutes.

Every day is like this. I know something is wrong with my body because I feel so bad.

I do wonder if anyone else with wegeners feels like this. When I was on meds I did feel like this but much worse. I used to think the meds were the cause but now I can't blame meds. Is this what wegeners feels like when it's not fully active??

Im worried that this is how I'm going to feel for the rest of my life. I've forgotten what normal feels like.

Pete
02-19-2015, 08:34 AM
If you're having night sweats and fatigue, you're probably flaring. Are you having any bloodwork done on a regular basis? My doc has me get a CBC, comprehensive metabolic panel, sedimentation rate, C-reactive protein, and urinalysis done every month. These let us know if anything is going on that needs to be treated.

Hope you get to feeling good soon!

Debbie C
02-19-2015, 11:03 AM
I agree with Pete, sounds like you are having a flare. You need to check with your doc. before it gets worse.

drz
02-19-2015, 03:35 PM
If you're having night sweats and fatigue, you're probably flaring. Are you having any bloodwork done on a regular basis? My doc has me get a CBC, comprehensive metabolic panel, sedimentation rate, C-reactive protein, and urinalysis done every month. These let us know if anything is going on that needs to be treated.

Hope you get to feeling good soon!

My monthly labs are about the same.

PJ2010
02-20-2015, 06:23 AM
Thank you all. I have an appointment in about 3 weeks with the specialist. I'm to have a blood test next week.

I think I have just learned to live with feeling like this.

cjhnsn29
02-21-2015, 03:36 PM
PJ,
I went through a lot of Dr's telling me same things. I went to ENT. He stated what is was my internal medicine Dr disagree. I been to 6 Drs from one end of the state to another. I felt like I was getting the run around. Until finally 4 out of 6 gave me the sane answer now I am stable.

PJ I thought like you but it will get better I promise. Good luck you need to talk, I am around.

CJ

PJ2010
02-26-2015, 06:30 AM
Well, after a six month wait, I've finally been given the privilege of a visit to see my specialist today. ��

You see, my specialist seems to think I only need to be seen every six months!!!

Oh well, I suppose they are busy with the real sick people.

The part that annoys me, is that having waited this long, I'm very unlikely to actually see the senior consultant. Last time the idiot I saw questioned whether I really have wegeners after having been treated for it by them for the last 6 years!!!

Unfortunately I'm likely to walk in there today with an attitude.

I wonder if this time they decide to be a little proactive? I would really like my hearing problems checked properly. Both my feet are still numb. I still have a fungal infection in my fingernails (I developed that 5 years ago as a result of the chemo). There is also a major more personal issue that has caused a relationship breakdown that they don't seem to care about. They always put my problems down to either smoking or ageing.

Ill let you guys know the outcome.

Have a nice day ��

LisaMac
02-26-2015, 07:00 AM
Yikes! I hope you get the answers and respect you deserve.

mishb
02-28-2015, 04:31 PM
How did your appointment go ?

PJ2010
03-01-2015, 06:54 AM
Hi Michelle.

It went well. All my tests showed no disease activity. My blood pressure was an amazing 120/60 !!!

The doctor I saw was Dr. Sharma. He is a very knowledgable and nice person. I told him of all my concerns. He is sending me to a specialist to examine my hearing.

At first when I told him about my hearing loss, he said it was probably due to my years of working in a noisy environment. This annoyed me. I told him that ever since I first got this disease my hearing became a real problem and has noticeably worsened in the last few years. Im not sure he realises that this illness has an effect on our hearing. That is a worry.

I feel that the only people that know this disease are the ones with it. There are so many symptoms. I told him I feel ill all the time. All he said was that all my tests showed normal.

It still leaves me with the question 'why do I feel sick all the time?'

Jayne 14
03-01-2015, 09:00 AM
Oh hon
That's awful to hear , you feel bad all the time
I feel bad some days then have other great runs of feeling well
The fatigue gets me frustrated though, having to pace myself and not do to much 1 day then rest is hard to get used to : but helps me
Your right - I feel fellow Wegs really understand how we feel
But it's not all bad :your blood pressure is great : maybe focus on small good things ??
Hugs x


Sent from my iPad using Tapatalk

Dirty Don
03-01-2015, 12:37 PM
After I achieved medical remission, I still felt fairly frequent fatigue (now that was overkill!!!), especially if I've done something strenuous. It does get better as one gets in better health/shape. I used to walk 18 in golf, now I'm a spoiled cart guy...way it is. Best to you.

Jaha
03-03-2015, 01:08 PM
I'm glad that you got good report. I know what you mean when you say you feel bad all the time. I still have more bad days than good ones. It tends to make you question everything, your Docs, your meds, your lab tests and your sanity. We just have to keep on keep'n on and try to believe that someday it will get to more good than bad days. All the best to you!:hug2:

PJ2010
03-07-2015, 07:14 AM
Hi all,

well I finally received a letter from my hospital confirming I have been referred on to ENT. The letter advised me that there is a long wait to have my hearing problem tended to. All I could do was smile sarcastically and throw the letter in the bin. So much for that effort.

You know, this hearing problem is part of my wegeners and I stupidly thought I was under a specialist who was meant to be dealing with my illness. He appears only to be interested in whether my kidneys are still functioning or not.

I thought there here would be a wholistic approach to my treatment.

Do others on this forum suffer the same incompetence in their treatment?

MikeG-2012
03-07-2015, 09:09 AM
Do others on this forum suffer the same incompetence in their treatment?

No, I have a fantastic team of docs that work very hard with me and for me to try to keep this stupid disease at bay.

Sorry to hear that you're not having a good experience. Shop around for docs, it will be worth it in the long run.

Dirty Don
03-07-2015, 10:57 AM
Don't have that problem on top of the existing ones. You're right...there should be a more holistic approach, but modern medicine, though it's leaning that way, doesn't seem to be able to adjust to that train of thought easily. Some clinics/research hospitals, etc. do it quite well, but it's expensive and so on...I'm sure some peeps' insurance companies have reminded them of that. And, then, to put your own team together, not fun or easily done. Doing it that way cost a dear friend his life. Hope you can find some more docs or learned enough on here about them that you can move on to some one who will provide what you need. Best to you.

PJ2010
09-13-2015, 05:51 AM
Hi there all. Sorry for being such a stranger, just been busy.

After a long waited six months between blood tests and a visit to the specialist I finally got to see the dr again. You won't believe this, the dr I got was the same one I saw last time and all he said was that all my blood tests were good. He said I had a slightly high ANCA level which is normal for anyone with Wg.

This is the same dr that questioned whether I even had Wegener's at the last visit.

I told him I have not been feeling well. A few times a week I feel so unwell I feel I need to be in hospital but I can't pinpoint why. He didn't even bother to check my blood pressure. I was in and out within 5 minutes. Again I put in a complaint to the hospital.

When I got home I had a closer look at the blood test results he gave me. He was right, most of the results were within the normal range. But, the MPO-ANCA was greater than 8.0 AI when the norm is less than 1.0. The comment from the pathology was that it is a VERY HIGH POSITIVE.

Can anyone give me some advise?

I understand that a level greater than 4.0 may indicate a change in disease activity. This, along with other physical symptoms I thought should be looked at more closely.

I feel generally unwell most of the time, night sweats are normal for me, my eyes hurt especially as the day progresses, my body aches most of the time, still have unusual discharge from my nose, my hearing is not good, I have lost all sense of taste and smell (long ago) and my sleep patterns since having this disease are crap.

Last week I went to see a new GP. I showed him these results. As a normal dr he professes he doesn't know much about the disease but he said he would read up on it. He has since sent me for more blood tests, a chest X-ray and also found my blood pressure quite high. He is now sending me for a ct scan as the chest X-ray has shown up a possibility of lung damage due to Wegener's.

Oh, I forgot to mention the persistent cough I've had since my dx.

Im thinking that with this general Drs interest and help maybe I might get looked at more closely by the specialists.

Maybe be they think 'oh well, he is 61' ???????

Birdie
09-13-2015, 06:31 AM
Last week I went to see a new GP. I showed him these results. As a normal dr he professes he doesn't know much about the disease but he said he would read up on it. He has since sent me for more blood tests, a chest X-ray and also found my blood pressure quite high. He is now sending me for a ct scan as the chest X-ray has shown up a possibility of lung damage due to Wegener's.

I read the first part of your post and was wondering how many times people get ignored by doctors, seems almost the norm if you read the posts here. And the flip of that question, does anyone get a good doctor? OK, there's a lot of that also.

Sounds like the GP is on your side and may do well. Sounds like you've got a good understanding as well. I would give him the chance to help and push for specialist help all those issues.

With the AI, I thought it's YOUR number which counts, you're looking for it to be stable from test to test whatever the number is. I could easily be thinking backwards.

Gary

Debbie C
09-13-2015, 12:15 PM
If I were you I would go to the e.r. They can contact someone that is knowledgeable with wg as a consult. There are a lot of Aussies on here that I am sure they can lead you to a good dr. The longer you wait with no meds...the worse it gets.

drz
09-13-2015, 02:31 PM
Generally symptoms outweigh lab results when assessing activity of Wegs and need for treatment. The Weg experts know this and place great weight on how you feel and what symptoms of active Wegs you might have that suggest Wegs activity and need for more intensive treatment.

PJ2010
09-13-2015, 03:47 PM
Thank you all for the feedback.
Is it normal to feel unwell all the time. It comes and goes on a daily basis.
Do you guys actually feel unwell? Or just when flaring?

Birdie
09-13-2015, 05:01 PM
Is it normal to feel unwell all the time.
Do you guys actually feel unwell?
Or just when flaring?

Answering for myself, yes, yes, no.

I'm on disability and in a wheelchair due to fatigue, it's so bad that most days I can't even drive before noon. Gain energy as the day progresses. I get a few hours a day where I can be on my feet enough to wash the dishes but even that is never before 3pm. Five minutes to wash dishes requires half an hour of recuperation laying down flat on my back. It took me three days to mow the very small back yard (33' x 17'). I've only managed to do that four times since April. Does that make you feel better about your situation? :) :) :)

Wegeners is unforgiving, it's relentless, it's sneaky too...

DON'T LET IT GET OUT OF CONTROL!

Go kick some doctors in the ass to get quality health care. Seriously dood!!!

Good luck.

PJ2010
09-13-2015, 05:52 PM
I am truely sad you are so unwell. I wish I could be there to help you.
I still work in my own business as a car mechanic. I have a guy that comes in to help when I need it.
Life seems to be extra hard on some people.
Thank you for your advise. Unfortunately the medical system seems to be hinged on people making big money at others expenses.
My heart for you my friend.

drz
09-14-2015, 02:21 AM
How you feel depends a lot on the meds you take and the amount of damage done by the Wegs to your body. High dosages of pred can make you feel quite good for it is can mislead you into thinking you have lot of energy but your body can't deliver and carry out your ambitious plans and you often crash very hard.

If you have lung damage and kidney damage like many of us, feelings of fatigue will be much worse than with the normal fatigue Wegs tend to create in most Weggies. Level of pain in joints also relates to dosage of Pred and degree of remission from Weg activity. Fatigue is probably the number one complaint and problem. Some people seem to do amazingly well though after Wegs in doing strenuous things but most of us seem to require more rest and a down sizing in life style.

cjhnsn29
09-19-2015, 06:23 AM
PJ! I was exactly the same way that you are feeling. It's like I wrote what you said! If it was me in my opinion I would try and find another Dr to start with. This WG is hard for some Dr's to understand trust me I have been there. I have a great team and the Dr I would recommend would be a IMA Dr (Internal Medicine Associate) The Dr I have is also older and my problem was that my medications needed to be changed and reevaluate. It can be that easy.

PJ2010
09-19-2015, 06:36 AM
Tuesday I have the CT scan. I've only just noticed on the referral the dr has ordered the scan because the chest X-ray revealed a shadow on the lungs. That explains the worsening cough. Could be granuloma? Might be something I might not like. Will find out soon enough.

Have a a nice day to you all.

mishb
09-26-2015, 11:21 PM
Hey PJ, how did the scan go, do you have the results yet?

PJ2010
09-27-2015, 04:16 AM
Hi Michelle. After sweating it for almost a week I found out yesterday it's all clear. Don't know what the shadow was but nothing to worry about.
I contacted the AMA this week and put in a complaint concerning the lack of adequate medical care I'm receiving from my specialists. I'm still waiting for their response. I'll let you know the outcome.

mishb
09-27-2015, 02:28 PM
This is awesome news.

:hug3::thumbsup::lol::lol::thumbsup::thumbsup:

Birdie
09-27-2015, 02:51 PM
I contacted the AMA this week and put in a complaint concerning the lack of adequate medical care I'm receiving from my specialists.

Try this one:

[email protected]

It's an organization devoted to tracking and maintaining statistics on health care organizations rather than helping individuals solve a problem. It's worth doing for the minor effort required to lodge a complaint, just to send one email.

PJ2010
10-19-2015, 07:00 AM
Well, so far my contact with the AMA (Australian Medical Association), did not fall on deaf ears. I had contact from the medical administrator and discussed my issues involving the lack of medical attention I have been receiving.
I attended an appointment with the specialist who checked me thoroughly and is sending me for some more extensive tests. After being treated for Wegener's since 2010, he now wants another biopsy to ensure I have this disease.
Im OK with that, maybe then they might take me a little more seriously.
I think the saddle nose should really answer their question and that in 2010 a biopsy was taken from a pseudo tumor behind my right eye which was growing at a very fast rate causing lose of vision.
Stay tuned :)

PJ2010
03-14-2016, 09:11 AM
Hello everyone. I've been gone a while. So much has happened in the last 4 or 5 months. They have now put me on imuran. 10 days into it so far. Vomitting etc. I feel worse. They say that clears.

All I want is to be able to work 4 more years. I'll be retirement age then. I don't want this disease or the meds causing me to stop earlier.

Pete
03-14-2016, 09:21 AM
Hope you're right about the immuran symptoms. Then, you should be able to work until retirement. I got sick nine months after I retired...

andrew
03-14-2016, 09:27 AM
Hello everyone. I've been gone a while. So much has happened in the last 4 or 5 months. They have now put me on imuran. 10 days into it so far. Vomitting etc. I feel worse. They say that clears.

All I want is to be able to work 4 more years. I'll be retirement age then. I don't want this disease or the meds causing me to stop earlier.

Good to see you back again. Unfortunate side-effect from Imuran. How long does the doc think you'll be feeling like this?

PJ2010
03-14-2016, 09:29 AM
Hi Pete. I think that's a bonus. At least you got to work through. Not good getting sick as you retire though.
I got this in 2010. Just been so hard dealing with it and trying to work.

PJ2010
03-14-2016, 09:33 AM
Hi Andrew. Won't see the dr for another few weeks. I did read your body should adjust. I also read if it doesn't go straight to the hospital.
I haven't vomitted for years. I forgot how awful it feels.

andrew
03-14-2016, 09:38 AM
Sure does feel bad - especially in this case where it doesn't stop you feeling like crap. I suggest a call to your doc to just ask if you should still be puking. Best to be sure it's just the standard reaction and not your body just refusing it altogether.

PJ2010
03-14-2016, 09:45 AM
Yeah, got the day off today. I might duck in and see the dr.
It's not constant, lasts only a few hours. Mainly dry reaching.
The other thing I've noticed is I've gone off food. I love food even though I can't taste or smell it. I still enjoy food for its texture now.

andrew
03-14-2016, 10:04 AM
Yeah, got the day off today. I might duck in and see the dr.
It's not constant, lasts only a few hours. Mainly dry reaching.
The other thing I've noticed is I've gone off food. I love food even though I can't taste or smell it. I still enjoy food for its texture now.

Good. Best to be sure. While loss of appetite is a side-effect, not sure about the taste/smell issue though. Might be worth mentioning too.

Middlesista
03-14-2016, 10:25 AM
Hello everyone. I've been gone a while. So much has happened in the last 4 or 5 months. They have now put me on imuran. 10 days into it so far. Vomitting etc. I feel worse. They say that clears.

All I want is to be able to work 4 more years. I'll be retirement age then. I don't want this disease or the meds causing me to stop earlier.

pj2010 - I am also about 4 years from retirement and want to be able to keep,working. Just was DX this past November and got back to work in January - my return was delayed not due to GPA but rather to a botched lung biopsy - but that is another story

i just stated Methotrexate - did you ask your doc for oral Zofran for the nausea? We use that a lot in the hospital and it does help some folks - might be worth a try.

Hope this gets sorted out for you - I hate nausea and vomiting but understand it is also a side effect of Methotrexate and I am not looking forward to it for sure.

Jaha
03-14-2016, 12:40 PM
PJ2010,
I hope you get your doc to check this reaction out. Did they do lab tests on you to check to see if you might be allergic to Imuran? I had to be tested and I believe that testing is protocol before taking it. I am wishing you all the best for a resolution.

drz
03-14-2016, 12:46 PM
PJ2010,
I hope you get your doc to check this reaction out. Did they do lab tests on you to check to see if you might be allergic to Imuran? I had to be tested and I believe that testing is protocol before taking it. I am wishing you all the best for a resolution.

I had the liver enzyme test too but started out with a mini dosage first just in case. Starting with a smaller dosage lessens the chances of side effects. I had none that I remember.

Alysia
03-16-2016, 05:12 AM
after 3 weeks on Imuran I started to vommit like hell about half an hour afer I took it. it got worse even when my dr. told me to take half dose. I vommited about 2 hours on, each time. felt poisned. after few days like that my dr. told me to stop it completely.

andrew
03-16-2016, 07:23 AM
Yeah, got the day off today. I might duck in and see the dr.

How are you feeling? Did you manage to see the doc?

PJ2010
03-18-2016, 06:37 AM
Sorry for taking so long to reply. Thank you all for your valuable input.
Havent been able to see the dr yet.
Now on imuran for 2 weeks at only 50mg. I take it with my evening meal at 6 pm. Almost exactly 4 hours later the dry reaching starts. So bad I carry a bucket around with me.
Worse than that, all this week severe diarrhoea sets in at the same time. I mean it's like I just took the prep you have before a colonoscopy. It doesn't stop until you have nothing else in your body.
Alysia said it felt like being poisoned. That's what I feel like.
Every night when I take it, I think, here I go again. I don't feel I should take it but it says not to stop without the Drs consent.
Honestly, wg is bad but my god, the crap we have to take is debilitating.
Reading the stats, a large portion of the people with wg die from the side effects of the meds.
I am sure these Drs have no heart. If they knew what we have to put up with we might be treated more humanely.

Alysia
03-19-2016, 01:24 AM
Sorry for taking so long to reply. Thank you all for your valuable input.
Havent been able to see the dr yet.
Now on imuran for 2 weeks at only 50mg. I take it with my evening meal at 6 pm. Almost exactly 4 hours later the dry reaching starts. So bad I carry a bucket around with me.
Worse than that, all this week severe diarrhoea sets in at the same time. I mean it's like I just took the prep you have before a colonoscopy. It doesn't stop until you have nothing else in your body.
Alysia said it felt like being poisoned. That's what I feel like.
Every night when I take it, I think, here I go again. I don't feel I should take it but it says not to stop without the Drs consent.
Honestly, wg is bad but my god, the crap we have to take is debilitating.
Reading the stats, a large portion of the people with wg die from the side effects of the meds.
I am sure these Drs have no heart. If they knew what we have to put up with we might be treated more humanely.

Forgot to write that I also had crazy diarhea. I think you must stop the Imuran. Call your dr. On the phone just to confirm stopping it. I was also on 50mg only. Enough is enough.

Debbie C
03-19-2016, 03:35 AM
PJ2010, that is definitely not a good sign, You can make yourself dehydrated. Have you tried taking the Zofran. My mother takes it a couple times a day and it helps her,you just let if dissolve on your tongue ( some,others you take with water ). I would call the drs. and tell them it is urgent that you get in too see him,you shouldn't have to wait this long. Good luck and hope you are able to get on something else.

annekat
03-19-2016, 05:26 AM
Hope this gets sorted out for you - I hate nausea and vomiting but understand it is also a side effect of Methotrexate and I am not looking forward to it for sure. Sista, I never once vomited while on methotrexate. And the doc did start me on a lower dose so I'd get used to it. Sounds like the Imuran might be worse, at least for some. Just wanted to offer some encouragement again.... the most I've ever felt was yucky after taking MTX. And that pretty much went away. I hope the best for you on that.

Middlesista
03-19-2016, 08:15 AM
Sista, I never once vomited while on methotrexate. And the doc did start me on a lower dose so I'd get used to it. Sounds like the Imuran might be worse, at least for some. Just wanted to offer some encouragement again.... the most I've ever felt was yucky after taking MTX. And that pretty much went away. I hope the best for you on that.

Thanks Anne! Did ok with first dose - lots of fatigue on 3rd day though.

Pete
03-19-2016, 08:27 AM
I didn't vomit with either ctx or mtx. Aza threw me for a loop because doc didn't do liver enzyme test. While I didn't vomit on aza, I wish I had. I was really sick...

annekat
03-19-2016, 10:02 AM
Thanks Anne! Did ok with first dose - lots of fatigue on 3rd day though. The 3rd day... hmm, my yuckiness and fatigue was over by then, except for my normal fatigue. Glad it went OK and you'll probably find it improving with time. Not to get too off topic, since the thread is more about Imuran!

PJ2010
03-20-2016, 04:18 AM
All valuable input. Thanks.
Yesterday morning after a very rough night I was feeling so unwell. Before showering I thought I might weigh myself. Three kilos lighter than three days earlier! Looking in the mirror my eyes were bloodshot. I looked terrible.
I presented myself into emergency and upon arrival I was immediately taken into care. The dr and nurses were brilliant. Carried out many tests and checks and quickly put me on a drip. After a few hours I improved.
They have made arrangements to see my specialist in the next few days.
I asked the dr if I could please stop taking the imuran. I said after 16 days of forcing down the pill and then becoming violently ill I just can't do it anymore. She was terrific. Great sense of humour. She then said I could stop and that she was sure it is a side effect of the drug.
Reading about the side effects it appears that whilst diarrhoea and nausea are common side effects they usually disappear after a short time. But when a patient suffers diarrhoea, nausea and vomiting and with that a rapid lose of weight, apparently very few cases are recorded.
Last night I felt on top of the world. I had a beautiful dinner, watched some television and went to sleep feeling almost normal again.
I should point out that the imuran was doing its job even though it was poisoning me. All my body pain was gone, initially my bloodshot eyes disappeared, my constant nasal discharge dried up and the pressure in my head was not there.
It seems I'm allergic to imuran now as well as predisolone and methyltrexate. Starting to run out of options.

PJ2010
03-20-2016, 04:36 AM
Oh, forgot to say. I asked the dr in emergency if she had come across others with wg. She said she thinks she did once.
She asked questions on how it affected me. All credit to her, she had my file and had read up on it prior to treating me.
A very good dr.

Pete
03-20-2016, 05:30 AM
Hi PJ,

Glad you're feeling better. Hope they can find a drug you can tolerate and is effective.

Jaha
03-20-2016, 09:43 AM
PJ,
I'm so glad that you went to the ER and got yourself taken care of. They will figure a better treatment out for you and you will hopefully feel better soon. Take care!

annekat
03-20-2016, 02:22 PM
I, too, am glad to hear you got taken care of, feel a lot better, and had a lovely dinner! I hope your doc can find something that works without making you sick, and you can proceed with your treatment.

Alysia
03-21-2016, 03:14 AM
Hi PJ. I am glad they gave you such a good treatment at the ER. Like me, we cant bear Imuran. Mtx didnt work for me. So I am on rtx. It works with almost zero side effects. Ask for it.

sangell
03-21-2016, 06:25 AM
Something occurred to me as I perused this thread and read PJ's comparison of his diarrhea to a colonoscopy exam prep. On my last visit to my primary care physician prior to being diagnosed with W/GPA and renal failure I was discussing my concern that 'something was wrong' in my 'guts' and my doc recommended I have another colonoscopy since my last one had been two years before and as my father had developed colon cancer at age 81 and pre cancerous polyps had been found during my last exam. I called my gastro enterologist to make the appointment but a rather significant problem developed before I could see him. Kidney failure! Now I wonder since my fluid intake is restricted, is it possible for people like me to even have a 'colonoscopy? As I recall you have to drink a gallon of that godawful solution to clean out your bowels which is 4 times my daily fluid limit. I'll ask my nephrologist when I see one next, if I remember, but until then, has this come up before?

vdub
03-21-2016, 08:20 AM
I had a colonoscopy last year and the prep process had changed from what I had to do 10 years ago. I believe I only had to drink 4, 16 oz glasses of fluid, but I can't quite recall. I do remember that it wasn't much of a problem. With respect to your kidneys, I don't think it would be an issue since the fluid is quickly flushed out of your system by a "more direct path". It would certainly be an interesting topic to talk over with your doctor.

debra
03-21-2016, 03:58 PM
Sangell, no a regular prep would be a disaster with kidney involvement, let alone extensive kidney involvement. Ifyou look even on the back of say mirelax, it warns right there on the back may cause kidney damage! Why in tiny print? This should not be used in compromised kidneys, and most would agree, no laxative should! There is a prep, done with magnesium, as magnesium is safe, but im not sure of the name? Go lightly? Not sure if thats the magnesium one... Please research this for you're self... Someone very close to me, had perfect kidneys, until they did a colonoscopy using mirelax.... Debra...

Alysia
03-22-2016, 02:04 AM
Something occurred to me as I perused this thread and read PJ's comparison of his diarrhea to a colonoscopy exam prep. On my last visit to my primary care physician prior to being diagnosed with W/GPA and renal failure I was discussing my concern that 'something was wrong' in my 'guts' and my doc recommended I have another colonoscopy since my last one had been two years before and as my father had developed colon cancer at age 81 and pre cancerous polyps had been found during my last exam. I called my gastro enterologist to make the appointment but a rather significant problem developed before I could see him. Kidney failure! Now I wonder since my fluid intake is restricted, is it possible for people like me to even have a 'colonoscopy? As I recall you have to drink a gallon of that godawful solution to clean out your bowels which is 4 times my daily fluid limit. I'll ask my nephrologist when I see one next, if I remember, but until then, has this come up before?

Hi. Please read the first post on this thread: http://www.wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/3942-careful-when-being-treated-hospital-emergency-rooms.html
No peroxide for us.
I have colon involvement but since my colon is so fragile and having crazy diarhea almost every day, my gastro dr. Told me (what I also felt was true) not to go to colonscopy at all. That I might not be able to stand it.
I wonder if there can be other options (not colonscopy) to make sure you do not develope cancer in your colon ? Anyway, first priority now are the kidneys.

debra
03-22-2016, 02:58 AM
In Canada they are recommending a test called, gFobt. It's a fecal occult blood test to detect colon cancer... Great to walk away from a test knowing you're kidneys will be, just as they were when, you walked in!!! Debra...
https://labtestsonline.org/understanding/analytes/fecal-occult-blood/tab/sample/

PJ2010
04-06-2016, 02:24 AM
Hello all.
Got an appointment to see my specialist in 2 days. The one that put me on imuran. I don't think he knows I did the stint in emergency a few weeks ago and was taken off the medication.
In the last few weeks off the imuran, I've noticed a gradual increase of symptoms. The most noticed is an immense build up of what I feel is pressure throughout my body. It's like when you take a deep breath and hold it for as long as you can. With it the sore eyes and general pain throughout my body.
All that did disappear on imuran, I just couldn't do the vommiting and diarrhoea.
I'm dreading the next experiment.
I'm so over wg.
These doctors do not realise or maybe care what the drugs do to us.
Ive totally stopped drinking. Used to have a drink before dinner each night. I started to blame alcohol for the way I feel. Unfortunately I still feel as bad. The only change is I don't get as tired as I used to.
Oh well, looks like wg is the culprit. :( On with a new drug aye?

Alysia
04-06-2016, 02:42 AM
Hello all.
Got an appointment to see my specialist in 2 days. The one that put me on imuran. I don't think he knows I did the stint in emergency a few weeks ago and was taken off the medication.
In the last few weeks off the imuran, I've noticed a gradual increase of symptoms. The most noticed is an immense build up of what I feel is pressure throughout my body. It's like when you take a deep breath and hold it for as long as you can. With it the sore eyes and general pain throughout my body.
All that did disappear on imuran, I just couldn't do the vommiting and diarrhoea.
I'm dreading the next experiment.
I'm so over wg.
These doctors do not realise or maybe care what the drugs do to us.
Ive totally stopped drinking. Used to have a drink before dinner each night. I started to blame alcohol for the way I feel. Unfortunately I still feel as bad. The only change is I don't get as tired as I used to.
Oh well, looks like wg is the culprit. :( On with a new drug aye?

the symptoms are back because wg is not being treated. ask for rtx - rituximab. its the only one that works for me. I had similar reactions to Imuran, like you did and mtx didnt work for me. ctx was not in order because my dr. assumed that if I vommit like hell on Imuran, it will be worse on ctx.

Jeanette
06-24-2016, 09:21 AM
Your having has much luck as my son Jonathan who's got Wagner's.
It's almost 4 yrs since he was diagnosed he was 14 at the time, but was 13 when he became ill. After months of being called a liar by ent because he had really bad earache, ( now he wears hearing aids because the Wegener's affected his hearing) he then ended up in a wheelchair because his joints were so badly swollen, thankfully a doctor sent him to see a specialist. With in minutes of seeing Jonathan he was rushed in to hospital. We was told at the time he only had hours to live.
Thankfully he's been off his medication for 6 months and he's been told he is in remission.
Please don't give up, you know your own body no one else does.
Jonathan specialist told us when the Wegener's is in remission it is not attacking his body, it will only do that if he relapses.
Good luck and keep us updated.
Jeanette x

Alysia
06-25-2016, 02:30 AM
Your having has much luck as my son Jonathan who's got Wagner's.
It's almost 4 yrs since he was diagnosed he was 14 at the time, but was 13 when he became ill. After months of being called a liar by ent because he had really bad earache, ( now he wears hearing aids because the Wegener's affected his hearing) he then ended up in a wheelchair because his joints were so badly swollen, thankfully a doctor sent him to see a specialist. With in minutes of seeing Jonathan he was rushed in to hospital. We was told at the time he only had hours to live.
Thankfully he's been off his medication for 6 months and he's been told he is in remission.
Please don't give up, you know your own body no one else does.
Jonathan specialist told us when the Wegener's is in remission it is not attacking his body, it will only do that if he relapses.
Good luck and keep us updated.
Jeanette x

Welcome to the family, Jeanette. I am sorry for the sufferings of your son and you. Being the one who takes care isnt les tough, although in another way. Thanks God that your son is now in remission. You can start a new thread under new members presentations subforum. There are more mothers of teens around so I hope you can help each other. If you want me to connect you with some mothers on facebook, please send me pm.