Recently Diagnosed - Hi from Australia

[LisaR]

Hello, my name is Lisa and I am 37 years old and a mother of 3 from Australia.

I was diagnosed with WG 8 weeks ago, and to be honest I am still very overwhelmed by it all. I had never even heard of the disease prior to this news. I have enjoyed reading the posts and trying to learn more about what I might face in the future. I am currently working with my specialists to try and get my medication right!! I feel like I have a good team of specialists helping me with this illness.

I really just want to feel better, I feel like an old lady and I have no energy at all. I keep trying to look 3 months ahead, telling myself I will feel better by then. I really hope so.

Lisa

[andrew]

Hi Lisa!
I'm from Oz too. It's a very overwhelming thing to get a diagnosis of something you've never heard of and, in my case - can't even spell it lol

Awesome that you have a good team of doctors, that's absolutely critical especially just after diagnosis. Just keep putting one foot in front of the other and give your self a break. Rest when you can and don't push yourself too much if at all possible with three kids!

Andrew

[mishb]

Hi Lisa,

Another Melbournian here. Welcome to the forum.
We also have a WG Australia group on facebook, if you want to come over and have a look.
Here is the link.
https://www.facebook.com/groups/516643745050360/


What are your symptoms and what meds do they have you on?
I am under the specialist clinics at The Alfred Hospital, where are you going?

I'm sorry that you have been diagnosed with WG but hang around here long enough and you will see that it's not so bad ......really (okay, maybe I need some of Don's coffee) :razz:

Take it easy and ........

[Anth]

Welcome Lisa! My name is Anthony and I am also a Melbournian! Really good supportive bunch of people on here. If there is anything you want to know don't be afraid to ask.

Cheers, Anth

[woz]

Hi Lisa, It is a bit daunting at first, little steps, plenty of rest, ask plenty of questions,
both here and your doctors, the more you know the better you feel.

All the best woz (another aussie)

[LisaR]

Thanks to everyone for making me feel so welcome.

For 6-12 months prior to being diagnosed I constantly had sinus / flu like symptoms, I was always unwell. My GP tried different antibiotics but nothing ever worked. I also had skin lesions which my Dr thought was due to me being so run down. In the end she referred me to an Ear, Nose and Throat surgeon.
He did an examination (camera up the nose - lovely) and said to me he would like to take a biopsy to check for a rare disorder just to rule it out.

He called me personally a few days later (never a good sign) to tell me I had Wegeners. I had no idea what that was and did a google search and completely freaked out!!!! I was then referred to a rheumatologist who was great and from there I had all the bloods / urine tests and was referred to a lung specialist. That 10 day period was quite harrowing waiting for all the results. Lung and Kidneys came back clear.

The diagnosis was that I had limited Wegeners as it was in my upper respiratory, skin and joints.

I am on 15mg Prednisolone, 15mg methotrexate (sunday only), folic acid. Since I have been on this dose I have been getting worse. My Dr sent me to another Rheumatologist this week for a second opinion and he thinks the doses are too low. I go back next week to my main specialist to work out the way forward.

Currently I am struggling with the pain in my nose again, general aching all the time, especially in my legs. I also have a two skin lesions on my legs. And just feeling so exhausted all the time.

Can I ask about people experience with remission, if you are there yet and how long it took?

Thanks again for the support, its much appreciated.
Lisa

P.S I have no idea how to use this site so I hope my thanks reaches the people that commented!!!

Hello, my name is Lisa and I am 37 years old and a mother of 3 from Australia.

I was diagnosed with WG 8 weeks ago, and to be honest I am still very overwhelmed by it all. I had never even heard of the disease prior to this news. I have enjoyed reading the posts and trying to learn more about what I might face in the future. I am currently working with my specialists to try and get my medication right!! I feel like I have a good team of specialists helping me with this illness.

I really just want to feel better, I feel like an old lady and I have no energy at all. I keep trying to look 3 months ahead, telling myself I will feel better by then. I really hope so.

Lisa

[pberggren1]

Welcome Lisa to our Family. I'm glad to see you have a good team of doctors. There are many others from Australia on here and from Melbourne particularly. Melbourne is prob the best city to be in with Wegs in Australia because they have some top docs there.

So far you are using this Forum very well. Seems like you are responding well to the meds. Please keep us posted. I am also 37 and first got sick and diagnosed with Wegs when I was 26. I am glad to hear that the Wegs did not damage your lungs or kidneys.

[mishb]

There are many people on here who have now reached remission......some with medication and some now off meds.

Your dose of pred and MTX (methotrexate) is very low and is basically a maintenance type dose.
To knock some of the symptoms on the head quickly, you should be on higher doses.......but then higher doses also bring their own evils in to the picture.

[Dirty Don]

Welcome Lisa, glad you found us for yourself! You have good docs it sounds like...your rheumy is correct in that you have too low a dose of pred. I was/am in exactly the condition you describe: got away with no lung or kidney damage (lungs looked like broken glass for a while, but pred must have corrected it along with breathing drugs) and was put on 15mgs/mtx/week and 40mgs pred/day to start with. Have weaned over 2 years off the pred then just recently succumbed to the 80% chance we all endure of relapsing in the first 2 years. Fortunately, it's been a minor relapse, but nevertheless, it was a relapse caused by going off pred...guess I may not be able to for a while at least at 3mgs/day. You need the pred to knock down the inflammation markers, the mtx is to control the AI.

The overhwhelming sensation of all this will recede somewhat as you voyage thru this disease. Lots of fortitude and patience will go a long ways as long as you have those good docs. You must stay in contact with them, notice and react to all weirdnesses in your body now, and take your protocols/drugs faithfully till you feel a need to look for additional help or can function better and more often. You will feel better in 3 months, but you will never feel better completely...way WG is...but, I know you can make it and can raise those 3 just fine...takes a lot of guts and help...you can do it! Best of luck to you.

[annekat]

Welcome, Lisa! Everyone has pretty much said it all, but I wanted to add that I'm glad you have found the site! I hope you are getting your dosages upped soon, so you will see improvement. You are in good company with the other members from Melbourne and the rest of Australia, and all of us here! Wegener's would be so much more difficult to deal with if we didn't have this forum. It is the greatest. Keep us posted on your progress!

[Alysia]

Hi Lisa,
welcome to the forum. It is the best place to get info, the best wg-experts in the world are just here.
how long are you taking MTX ? it takes about 6 weeks untill it start working.
how old are your children ? how did they react to your illness ?
I am 45 yo and I have 3 children. I was 40 at my acute onset of WG. my little child was only 3 yo. I was in hospital and he was at home, sad and crying and didn't understand why I am not at home (I never go on vacations without my children) and he didn't want to sleep all night. it was more hard to endure then all the other things.
I hope you will soon feel better. please update us.

[LisaR]

Hi Alysia, my children are 11, 8 and about to turn 2!!!! We told the older two that I have the disease and I will be ok but will have some bad days. I don't want them worrying about me to much.

I have been on the MTX for about 6 weeks, they are thinking of putting it up to 20mg once a week from 15mg and increasing the steroids. Can I ask if anyone else had a problem with weight gain? It is really starting to worry me!

As I'm sure you know, I just want to have energy for my active kids!

Lisa


Hi Lisa,
welcome to the forum. It is the best place to get info, the best wg-experts in the world are just here.
how long are you taking MTX ? it takes about 6 weeks untill it start working.
how old are your children ? how did they react to your illness ?
I am 45 yo and I have 3 children. I was 40 at my acute onset of WG. my little child was only 3 yo. I was in hospital and he was at home, sad and crying and didn't understand why I am not at home (I never go on vacations without my children) and he didn't want to sleep all night. it was more hard to endure then all the other things.
I hope you will soon feel better. please update us.

[mishb]

Hi Lisa,

Unfortunately, the wonderful pred (the pill we love and hate at the same time) brings with it, it's own little joys.
Chubby chipmunk cheeks and weight gain are the main two. A member on here loves to call this little white pill "pregnantzone" because that's how it makes our tummy's.
THe weight gain does get better as you start to reduce the dose again - however, at this stage of your diagnoses, it is more than likely that you will increase the dose

Unfortunately, I have put on 12 kilo's in the past 3 years.

Pred just loves to makes us eat
Try to avoid salt and fatty foods and processed foods......and I should try to start listening to my own advice :sad:

[Dirty Don]

It's the pred...honest.

[annekat]

Lisa, it sounds like your case of Wegener's is less severe than many, though that is not to make light of it since it is an unpredictable disease and can turn on people when they think it is going well. However, many of us, including me, have done very well on the basic treatment of immunosuppressants and pred and usually Bactrim, which may be called Septra where you are but is an antibiotic to protect your lungs from a rare infection that we become more susceptible to when immunosuppressed. It is very likely that with the correct dosages of these meds, you will notice a great improvement within a few months. The fatigue may take awhile to go away to the point where you feel enough like your old self that you can actively participate in your kid's lives like you could before. You may never regain your previous energy level, but it is likely you will come close. 20mg. MTX is still not a really high dose but is probably better than 15mg. at your stage. Perhaps they were giving you time to get used to it. I'm on 15mg. but I'm 2.5 years into treatment and that is more like a maintenance dose. Yes, pred will do the things mentioned above... some people have more problems with nervousness and irritability and stomach problems than others. Since it makes you want to eat all the time, pick healthy foods such as veggies and just pig out on them! I know, easier said than done. The negative effects DO go away for most people when they taper down from the higher doses. I wouldn't worry too much about the weight gain since getting better is the most important thing, and not everyone does gain a ton of weight.

Most importantly, it sounds like your Wegs was caught earlier than for many of us, before a lot of damage was done, and you stand a great chance of recovering and going into remission so you can fully be there for your kids and other people and things that are important to your life.

[NikkiNicole]

Welcome Lisa, I am NOT from Australia!!! I am here in Northern California (no, not the sunny beachy part). I am also only 2.5 months into my own official diagnosis even though Wegener's was being investigated since the end of January. I had to get rid of a rheumatologist unfamiliar w/ the disease and unwilling to accept that's what it was.
I gained weight with my prednisone. Unfortunately, the prednisone is responsible for about 20ish lbs. I am currently doing 20mg injections of MTX weekly. I was taking the pills but it wasn't making anything better. It seemed to be making things worse. So, I've had two injections thus far ... no improvement yet, in fact I'm a little worse, but there is hope for the future.
I have yet to get the disease under control so I cannot speak of remission. I am like you where I do not have any major organ damage and I hope to keep it that way!!!
Welcome to the group. This truly IS the greatest place for information and support on this disease. I've joined numerous Facebook groups and met just the greatest people I would never know otherwise. It's unfortunate how we all came together, but I am grateful for their presence in my life.
Again, welcome ... I hope things start to get better for you.

[Wegetarian]

Welcome Lisa! So many Australian members here, I wonder if its just a fluke and that people might be more inclined to join when they notice fellow countrymen.



I am on 15mg Prednisolone, 15mg methotrexate (sunday only), folic acid. Since I have been on this dose I have been getting worse. My Dr sent me to another Rheumatologist this week for a second opinion and he thinks the doses are too low. I go back next week to my main specialist to work out the way forward.

I was diagnosed around the same time, and only had Weg's in my nasal area so I only had to use Pred and MTX (first just pred for a few weeks until I got a time for the doc). When I got out from the hospital I was taking 60mg pred / day and we upped it to 80mg when I didn't feel too good (60 in the morning and 20 in the evening). After that we have cut the pred and increased the MTX, so now I'm taking 25mg of MTX once per week and 30mg of pred per day. It seems to be fairly rare to not use CTX or MTX at the beginning, but MTX with Pred can be used to get Weg into remission in light cases according to some articles I read.

I guess the starting amount of pred depends quite a lot on the body weitght, and I'm a big guy, so wouldn't be suprised if you had a lower dose. But if you started on 15mg then it certainly sounds low. When my symptoms started I got some pred from my local health care center (started at 20mg and cut down each day) and I didn't notice any effect, my nose was completely clogged. The 60 mg I got at the hospital started to open the nose within hours.

Have your bloodworks been OK? I talked with a rheumy and he was lookign at my results and figured the disease isn't attacking based on the levels.

[gilders]

Hi Lisa and welcome.
The first thing to get your head around, which can be quite frustrating, is the fact that there is rarely an answer to a question that can be completely accurate. The reason being is that WG effects people so differently. This forum may seem a bit overwhelming at first as some people have a very severe form of WG. I try to tell myself that there is plenty of people who have being diagnosed with WG, but have responded so well to treatment that they have never felt the need to look for forum support. Therefore, hopefully, you will turn out to be one of the lucky ones that responds well to treatment and never has a severe relapse - it can happen!

You ask how long it takes to get in remission - no 1 answer unfortunately. When I first got diagnosed with WG it had caused much damage including kidneys. Once it was under control there was still a long recovery period. I was well enough to return to light duties at work, for a few hours after about 11 months of treatment. You should recover much quicker with less organs involved, but there's no certainty.

The main thing is is that you have been diagnosed now and treatment has commenced!

Good luck and keep us all informed.

[Pete]

G'day Lisa!

Welcome to the forum. This is where you can ask any questions you may have about our insidious disease and get answers from folks who are sharing the "experience". I thought you framed the conversation with your kids well. I hope you have mostly good days ahead.

I'm also coming out of remission. Was off pred for about six months, but began having very vague symptoms that I was ascribing to aging (I'm 67.). The rheumy saw that I was having some blood in the urine and creatinine was a bit high. So, this coming week I have the first of two rituxin infusions to get things stable again. Also, back to 60 mg/day of pred. I feel really good. Inflammation markers are "plummeting" (to use my primary care doctor's description).

good luck and better health!

[woz]

Hi lisa, you meds do sound a little low, if you are still having aches and pain, but I am no doctor. I first fell ill December 2012, I had pain in my teeth, and it used to travel around my jaw to other teeth (weird I know), freaked out the dentist, he had no idea what was going on, then went to my sinus, as well as migraines from hell and fevers, doctor thought it was some sort of viral infection, went to see ENT, he thought the same, put me on 3mg pred (February). March , my gall bladder was taken out, free ride in ambulance(felt like someone stabbed me an kept twisting the knife), then my eyes went red, aches and pains in body started ( that freaked everybody out), doctor sent me to Ophthalmologist and Rheumatologist , Finally my eye doctor worked out what it was, and my rheumy agreed. My Rheumy marched me down to the hospital, and got her husband (ENT specialist) to do a swab of my sinus that night (he also rebuilt inside my nose), FINALLY something being done and a name. April, found out I also had kidney and lung involvement, 2 weeks in hospital, many many drugs, they started me on 200mg cyclo, bactrum 3 days a week, and 100mg pred ( I could almost walk on the roof, I felt sooo good), pred started to taper, 3 weeks later. Stayed on cyclo, bactrum and pred taper for next 3 months, went back to work middle of June. July got rid of cyclo, and changed to azathiaprine 150mg, bactrium, and down to 15mg pred. August and September, ANCA and pr3 negative, blood work perfect, September stopped pred, and bactrum, lungs and kidneys excellent. I am now on a maintenance 150mg azathiaprine. My thoracic specialist is still amazed that I am where I am, and laughs every time I see him. I know how lucky I am, to get to where I am now.

I went through hell for 3 months, didn't like it, and came back.
The Wegs journey can be short for the lucky few, eat healthy, rest, and have a positive attitude.

I hope this helps Regards woz.....

[Kellie613]

Hi Lisa,I am new to this forum. I was just reading some posts and came across yours. I want to tell you that just by reading your words I can tell that you have a positive attitude. That goes a long way in dealing with this disease. I was diagnosed this year, in May. I have a wonderful family doctor who diagnosed me with what she thought could be a vascular issue. When I had a would on my leg that wouldn't heal. She promptly sent me to a Rheumatoid specialist who, after some testing, made the final diagnosis of Wegeners disease. I have hade a great team of doctors and was very lucky that it was caught early. None of my organs had been attacked. The medication is doing its job and I'm starting to be weaned off the prednisone now. I will stay on the chemo for another month then switch to another drug which ill be on for a year or so. I have been able to return to work now part time. So, there can be a light at the end of the tunnel...so stay positive and do what your doctor tells you. Good luck to you...from Canada!

[LisaR]

Thanks Kellie, can I ask what medication and levels they put you on? Mins doesn't seem to be working as yey

[Kellie613]

Hi Lisa, sorry I'm just getting back to you. I haven't been on here this week. Had a busy week. My Rheumatologist has me on Prednisone, started with 60 mg a day and is being decreased now. Chemo, started with 200mg a day. now 100 mg a day.among other drugs from other specialists. Mepron,a liquid, 1500 mg a day,to protect my lungs from Pneumonia, a small blood pressure pill 2mg a day,because my kidneys were spilling a little protein. And Actonel 35 mg once a week for my bones to help prevent osteoporosis. I hope this is helpful for you. So far my body is responding well to my treatment. So, I'm hopeful for remission. Doctor is switching me from the Chemo ( cyclophosphamide ) to Imuran in November. They don't like to keep you on the chemo for mor than 6 months at a time. It's hard on your body.
I wish you luck!
Kellie

[OJSRLS]

Glad to hear you have a good team of Doctors. My specialist is 100 mile drive so am thankful I am doing okay at this time other than the constant worry of when this disease will rear it's ugly head. Right now my Wife and I have 6 family members fighting cancer so my Wegeners doesn't seem to compare. Let's keep our chin up One Day at a Time and be thankful for each sunrise get to see. Bye