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Deanne Hull
05-25-2010, 10:28 AM
Hi my name is Deanne and I am from Perth, Western Australia. I am new to doing this sort of thing so I am a bit nervous. I have been diagnosed with WG since Sept 09 and have never ever heard of this disease and nobody else has either. I am very lucky to be here and have just recently had a slight flare up with Irisitis. This disease presented itself with sinus and flu symptoms and weight loss not long after a gall bladder operation and when we were in the midst of a swine flu epidemic of which i thought i had. As there is no support group over here i thought i would look on line and to my surprise there are a lot more people with this condition that i thought. I am just wondering has any body had therapy and how are the families coping. I have my ups and downs with this thing but mostly just try and get on with it. It has been an interesting journey with the medications and what it has done to my body some of which i find very funny..

it is nice to know there are other people out there as I thought I was the only one and it is hard to explain to friends how you are feeling..and as much as they try to understand they don't really. I have had wonderful support from my doctors and they are probably using me as a test case which hopefully will help other people in the future.

elephant
05-25-2010, 11:23 AM
Welcome Deanne! Wondering what medicines your on? How is your eye? Are your sinuses better?

Deanne Hull
05-25-2010, 11:38 AM
Hello, how are you going? I am on 25mg of Prednisolone and 100 mg of cyclophosphamide and also on cholesterol medication, anti dressant medication, and esomeprazole for the stomach. My eyes are better still on steriod drops for 2 more weeks, they were terrible and i could not seen at all outside and could not drive for a couple of weeks. It has not affected my vision so that is a bonus. At the moment i am experiencing pain in my sinus around my right eye which can be bad first thing in the morning. Sinus not too bad but apparently i do have some hideous snoring according to my hubby which i have never had before.

Sangye
05-25-2010, 12:32 PM
Hi Deanne, I'm glad you found us. You're not alone anymore!

I've gotta get to bed, but just wanted to say hello. I started therapy when I got dx'ed and still go once a week. I couldn't have made it without that help.

Natalie
05-25-2010, 12:42 PM
Hi deanne Im on the East Coast , I thought I was the only one too in Oz anyway ! but when I found this forum a about a month ago I was quite suprized and releaved at the same time
. Its a good thing being able to talk to people who have been through the same stuff . welcome Deanne and will chat more down the track .

Deanne Hull
05-25-2010, 12:43 PM
Thanks so much, its 10.45 am here so i am not sure of the time difference of australia and america. I might have to
explore therapy as well.

Deanne Hull
05-25-2010, 12:45 PM
Thanks Natalie, i am very overwhelmed with the lovely responses so far, thank you!!!!

Col 23
05-25-2010, 01:36 PM
Hi Deanne
Im in Perth Western Australia and was diagnosed in Dec 2009. I attend RPH, where do you go and who is your Rhuemy.
Col 23

Deanne Hull
05-25-2010, 02:06 PM
HI I see a Dr Simon Wei who is a Kidney specialist and a consultant Nephrologist and who is at SJOG Hospital in Subiaco, orgninally i was admitted to Hollywood Hospital. How is your condition and how are you managing...

DEE
05-25-2010, 03:09 PM
hi Deanne imm in the UK
i to have had eye and sinus issues and yes my hubby says the snoring can be really loud sometimes according to hubby
im on similar meds to you plus others for additional problems that i have
you have arrived at the right place
the support on this site is brillant , not just for information but sometimes just to be able to let of steam :)
welcome DEEx

Col 23
05-25-2010, 05:31 PM
Hi Deanne
I too was diagnosed after nearly going blind and admitted to RPH. I also had nodules in my breast and lungs and my feet were extremely painful. I also experienced driping nose and other nodules in my legs and arms. Im down to 15 mg of Pred from 80mg and 25 mg of Methotrexate, I also take antidepresant medication. I have Rheum arthritis also with this condition that affects my joints. RPH has two cases of Wegener's me and someone else. I am also aware that there a few cases at Sir Charles Gardiner Hospital. Did your specialist try other medications before going on cyclophosphamine? Its been a tough road especially with the high dose of pred, had a lot of melt downs. I also felt very alone until I found this group.
cheers Col 23

elephant
05-25-2010, 08:54 PM
Deanne, I had eye problems for years and no eye doctor could figure it out. Once I was diagnosed, I had to tell my eye doctor what it was. My left eye is the problem, I had glacoma...that is gone now, but just developed cataracts which don't go away. I have a little swelling around the eye, but the doc says...it has improved. I still have sinus issues.
Thanks for sharing!

sharon
05-25-2010, 09:10 PM
Hello Deanne,
I am so glad u found us. I am on the east coast, not too far away from Natalie. I have found it so good talking to people who are in the same boat, just getting stuff out my head with others that understand has really helped me, i am sure it will you too. Welcome once again, you are among friends.

JanW
05-26-2010, 06:54 AM
Welcome Deanne...I'm in the U.S., New Jersey to be precise. This is a wonderful group---you will make friends and find support here.

Bruce
06-14-2010, 02:34 AM
There's some people in Perth area who know about WG. You might contact the Australian WGSG at Wegener (http://www.wegenersaustralia.com/) Also you might email to [email protected] to ask about WG and similar autoimmune vasculitis patients in the Perth area. (Jack's lovely Margaret had WG but passed away due to other causes).

elephant
06-14-2010, 02:48 AM
Thanks Bruce for the information. Welcome, sorry to hear about Margaret.

Deanne Hull
06-14-2010, 09:07 AM
Thank you very much I will certainly email and find out.

Deanne Hull
06-14-2010, 09:12 AM
HI Col, my specialist started me on cyclophosphamide and pred first and my body does respond very well to this treatment so far but a couple of months ago I had a flare up due to the both meds being reduced too fast which resulted in irisitis so i am back up again and will be seeing both the eye specialist and my wg specialist this week. He says he will reduce the meds one at a time if my results are good. fingers crossed !!!

We are allowed to have meltdowns we have a lot to cope with so take it easy on yourself.

Col 23
06-14-2010, 06:57 PM
Hi Deanne
Sounds like we both have eye problems, I was like you never heard of WG before, came as a bit of a shock. Every time I have a flare feel like someone has just punched me in the eye and I have to up the steriod drops. Mostly my eye specialist has advised that it has to be treated systemicaly ( cant even spell some days). Went up another 5mg of Steriods recently but back to 15mg until the end of the month. Still on Methotrexate 25mg. Feet having like pins and needles and fatigue continues to be a real problem for me, falling asleep or extremely tired all the time. Are your bloods coming back better that they were in September? How is the cyclophosphamide side affects? My Rheumy has talk about this drug being the next one for me if needed. I dont want to go on it.
It is hard for family and friends to understand this disease, I always feel like a hyperchondriac (still cant spell today) but they will never know the effort put in some days to attend a function or visit anyone. Im a good pretender.
cheers Col 23

Deanne Hull
06-14-2010, 09:58 PM
Hi I seem to have got over the flare up nearly, i can still see the inflammation in my eyes so i am off the drops now and will see the doc on Wed to see what he says, I am having a blood test tomorrow for my specialist for friday, my anca was 10 before the mediation was reduced and with the flare up it went to 26. ( when i was first diagnosed it was 65 ) I have also had a bone density test to see what is going on there so i will find out that as well.

It is hard to know what medication is doing what but the steriods are the ones that cause me to think that this is what it is like to be on speed. Those side effects are the hair growth on my body where i don't need hair to grow but my eyebrows are looking pretty fine at the moment. I hate the weight gain, the moon face, and the hair thinning. I have a horrible taste in my mouth which is more acute not long after i take all the meds. Most of all i hate the stomach swelling, which is very uncomfortable and have already had someone say are you pregnant. Charming!!! On the other hand, my skin looks fabulous.....no wrinkles, fat doesn't crack as they say!!:)

It is hard on the family especially my husband, this is our second marriage and he works away and we have 6 kids (ages 24, 23, 22 21, 18 & 16 ) between us and life is always challenging enough with them. I just try to get on with things , try not to do too much, learning to say no when i have to. Making myself a priority which is hard as my kids have always come first. My body does respond well to this treatment and resting a lot seems to help enormously. Lucky we have foxtel... I do have brain fog most afternoons and it is hard to get the words out sometimes..And like you i do pretend sometimes to stop people from worrying as I don't want them too...

Are you working at all and doing some exercise, my doctor recommends cardio work to keep the vascular system as healthy as you can so i have started Zumba of all things and i am going to try yoga and just walking and maybe swimming in the summer,

Col 23
06-15-2010, 03:32 AM
Hi Deanne
Noticed your in Bicton, Im in Henley Brook. Perhaps we should try and catch up mid way if you feel comfortable or have the energy between Doctors appointment. Im not working at the moment. Im not doing any exercise at the moment as it takes all my energy just to get out bed, shower and get through the day. Doc has advised to go at 10%. I dream about going for a swim or a walk. I have a treadmill that is collecting dust. However I hope at some stage I can return to exercise. I too have the moon face, fat on the stomach and my mouth feels likes its full of soap suds therefore food taste like that as well. I have foxtel as well and the interesting thing is I never get to see the end of most shows as I fall asleep, lucky if I record I get to see them again or if they are repeated. So over it rather be a bit more productive. My husband is extremely supportive and the kids are all living independent now.
cheers Col 23

sharon
06-15-2010, 12:46 PM
Hi Col 23,
i gave my treadmill away, it was too depressing watching it gather the dust, I keep telling myself i will walk tomorrow, i may just actually do it one day and shock myself, and the dr. LOL
I have decided to stop getting frustrated with this body, accept what ever energy level i have for the day, and work within those limits, and not what i decide i should have and just to stop stressing about, what i get done, gets done. (it has only taken me 3yrs to learn that gem!) :)

Deanne, & no you are not a hyperchondriac, i can relate to how you feel 100%, my extended family, and some friends just don't get it. The trouble i have found with wg is that comes with some pretty good masks, i have come to the realisation that we look pretty much on the outside as we always have done, but on the inside very different, only those closest to us, see the cracks, the days spent in bed, general crankiness due to the fatigue and just not having the same spark (i feel pretty dull, kinda like i have a dimmer switch turned on a lot of the time), Your body has new limits, sometimes hanging out the washing is akin to a marathon, show kindness to yourself.
take care

Col 23
06-15-2010, 05:07 PM
Can so relate to that Sharon. Thanks just puts me at ease a bit as Im waiting for a good day. No energy, sleep patterns all over the place, wake up for 1/2 hour sleep for 4 - 5 hours, wake up for 2 hours sleep for 3 hours and so on. Weird. Cheers Col 23

sharon
06-15-2010, 05:35 PM
Col 23 glad i could help, i think our bodies find it really hard to get into any "normal" sleep routine, the fatigue and pred (sorry i can't remember if you are on it) play havoc. I try to ration out my energy now, kinda like my choc LOL :)

Carol
06-16-2010, 03:22 PM
Hi Deanne Welcome to the group. I'm also from Australia and was diagosed 2 years ago. TODAY is my first day without Prednisolone. So now all I'm on is 3 Imuran a day and ES Bactrim 3 times a week and Calcium and Actonel for calcium laying down. I'm excited but of course a little nervous. I'm very well at the moment - have just have 2 wonderful months holidaying in Alaska and USA. I felt so good in the dry desert air of Arizona but got back yesterday to cold weather. Now I have no excuse to lose weight except that I went ot the supermarket today to get the fridge stocked up and of course after 2 months without big blocks of Cadburys I've stocked up! Initially I found this site just so important but as I have got weller (I think that might be bad grammar) I only look on the site occasionally to see how others are going. if you ever want to chat I have a free hour on my mobile each night at 8pm. Just contact me on my private messages. Bye Carol

Sangye
06-17-2010, 12:22 AM
Carol, congratulations on getting off pred! Big hooray for you!!

I miss the dry Arizona climate so much. It was great for my constitution. The East Coast humidity is awful for me.

elephant
06-17-2010, 11:37 AM
Yes congrats Carol for getting of prednisone. That is a dream come true!

janene
06-18-2010, 08:28 PM
Dear Deanne
My name is Janene. I live in Melbourne. Diagnosed dec 2009. I felt alone. Found this site. Just reading peoples posts makes you feel less alone and more positive

janene
06-18-2010, 08:31 PM
Dear Carol
How did you feel at the start on Imuran
Janene

Deanne Hull
06-19-2010, 11:29 PM
Hi Janene, how are you going, I am very new as well and this has been very helpful to me. I love Melbourne and my sister lives in St Kilda and love chapel street for shopping. It is not all doom and gloom, support in any way is essential...Deanne

Deanne Hull
06-19-2010, 11:38 PM
HI Carol, thanks for the welcome congratulations on your first day with out prednisolone ( i have so much trouble pronouncing that word out loud ), thank god for computers i say, because my immune system is so compomised i try not to go out a lot in crowds and shopping which is a good thing as most of my money goes on meds and chocolate, it is my little window to the world. I have Skype as well and talk to my daughter overseas in London and soon my hubby who is going to egypt to work. Glad to know that you can travel okay, I have just come back from NSW for five days to see my step son graduate from the army in wagga wagga. I do have a facebook page also. Good luck with the weight loss let me know how you go with that...
Deanne

Deanne Hull
06-19-2010, 11:45 PM
Hi Col, how are you going, I am doing pretty well at the moment, i have seen my doc yesterday and all my results are good and he is decreasing one med at a time and we are going slow to avoid flareups. I have to take sleeping tablets to get to sleep otherwise i wouldn't get any. Where is Henly Brook I have not got a clue. Its sounds lovely...It would be great to meet you, when you are feeling well enough.

Deanne

Col 23
06-20-2010, 10:37 AM
Hi Deanne
Just thinking how are you going on Cyclo, are you having any side affects? Just interested as I think that is what the Rheumy will put me on next if I dont stabilise. Also alot of your symptoms are similiar to mine. Sounds like your doc has it under control. Henley Brook is is in the Swan Valley. When we are up to it we will catch up. I have friends in Lesmurdie and use to live there. So we could meet half way for coffee/tea to save our energy on a mutual good day for both of us. Would be great to finally meet someone in person who has WG. Feeling okay this morning so hoping I can get a few jobs done and have an outing with my husband. It usually takes about 2 hours after waking to work out if Im going to have a good or bad day. Feel less down today.
Cheers Col 23

Col 23
06-20-2010, 10:40 AM
Hi Sharon. Just wondering how your are going on your meds. Where in Queensland are you?
If I have energy today I think I need to make an apricot choc slice. Yummy.
Col 23

Col 23
06-29-2010, 07:41 PM
Hi Deanne
Just wondering how you are going?
cheers Col 23

Deanne Hull
06-29-2010, 09:32 PM
Hi Col, I am going all right, I have been having a barrage of tests to find out why i have pain around my eye and so far, they can't find anything. which is a good thing but i am having some severe pain and I think it might be allergies as the eye doc and the ent doc says everything is clear. I am trying not to go for the painkillers but it is wearing me out a tad. I am going to give my doc a call tomorrow to see what he thinks. I have recently been to my doctor and he has lowered my dosage of pred and kept the cyclophosphamide up. So as our weather has been cold lately maybe that is not helping. So I haven't been out much as hubby as just gone to egypt to work and I just have my 17y/o son ( caveboy ) to keep me company ( not ).

How are you going, hope you are keeping warm.

Deanne

elephant
06-29-2010, 10:10 PM
Hi Deanne, I still have slight eye pain under the eye. The eye doctor saw some swelling like it was allergies...but I really don't have allergies. I think it might have to do with the sinuses underneath the eye ..it might be radiating to the eye area.
Are your sinuses pretty bad? Did you have a CT scan of the sinus? Last year my WG specialist ordered a CT of my orbitals to make sure everything was ok.

Deanne Hull
06-29-2010, 10:31 PM
hi Elephant, yes i have just had a ct scan and an xray with no sign of anything , and a camera up the nose yesterday and the ent doc said it is the best he has seen it since i was diagnosed. I do suffer dreadfully from allergies and get hayfever quite badly, it does run in my family, we have excema which my son suffers from and sinus problems as well in fact that is what we thought wgs was in the first place. My nose is running and my eye is running honestly i am so over myself at the moment. But I still have two legs and a heartbeat and just have to get on with things..thank you for asking that is lovely....

elephant
06-30-2010, 10:37 AM
Your welcome! I think once the Wegeners is controlled the runny nose will stop or be better. I am in remission being on 4 WG medicines and still have to blow my nose every other day. On top your allergies that even makes things worse. Love your attitude!

Col 23
07-01-2010, 11:06 PM
Hi Deanne
Just wondering, if you are lowering the dose of Pred sometimes symptoms start to flare. I spoke to my Rheumy yesterday and she is also lowering my Pred (1mg every 3 weeks) commencing 14 mg on Saturday from 15mg. She advised that quite often it feels like a flare for a few days when you are tapering the Pred but to persevere if you can and it should go away, its withdrawal from the Pred. However if the symptoms persist after about 4 days to see doc. Just thinking about you also tapering and if this is also having some effect. Im still on Methotrexate and she doesnt think I will be coming off that anytime soon. Been feeling lousy lately too. But keep pushing myself til I can do no more
cheers Col 23

Sangye
07-01-2010, 11:50 PM
Been feeling lousy lately too. But keep pushing myself til I can do no more
cheers Col 23
Col, please back way off on your activity level. Feeling lousy like that means you're outrunning the drugs-- good way to cause a flare. Especially since you're trying to taper the pred, you just cannot be overdoing it. Remember to take the long view with Wegs. Overdoing it this week means more drugs and/ or less function in the future.

Jack
07-01-2010, 11:59 PM
Agreed!
Your body is taking enough punishment, try to be kind to it.

Col 23
07-02-2010, 03:17 AM
Thanks Sangye and Jack
I forgot the what my doc said a few weeks ago, " I just have to survive the next 6 months and that Im taking a cocktail of drugs and to go at 10% and no stress". Sometimes we need reminders. So easy to forget when you have a !/2 reasonable day. I just get excited and think I can do more than I can, the mind is full of plans but the body screams no....!!! I think I got remindered today as the body would not move and I felt so weak, sleepy and drained. After my Rheumy appointment yesterday I went to the shops with my husband and did a fair bit of walking. Soon as we got home I was out for it (asleep)for 4 hours. This weakened state continued all today. However now I cant sleep but feel a little better. I have already slept most of the day and fell asleep from 9 - 12pm but woke up.

By the way the I asked the Rheumy about a referral to ENT and an echocardiagram but she stated that she didnt think I needed it and there were no indications ie blood pressure, sugar levels, breathlessness for the referral to the heart specialist. Also I dont have much sinus involvement only a very small amount and hearing appears okay. I would have like the throat checked out but since being on meds my sore throats have gradually disappeared. So thats good news I suppose. She did refer me for another mamograph just to rule out the C of the breast now the lumps have resolved. So waiting for an appointment time. I also had another blood test that day. So when I look at it now Ive written it down it is good news.

Sangye sounds like your still playing snakes and ladders but doing well if you can keep the pred low. Jack are you getting any improvement?
Cheers Col 23

Sangye
07-02-2010, 03:23 AM
Col, please insist that your doc order a routine echo. Tell her Wegs does silent damage to the heart--by the time you have symptoms, it could be too late. I suggest giving her a copy of the case study posted by Jack a few days ago. I can't imagine a doctor reading that and continuing to say "There's no reason to do any echo."

I hope you feel better soon. Glad your upper respiratory symptoms are resolving. :)

JanW
07-02-2010, 05:13 AM
Definitely get the echo. Heart studies should be routine for WG patients.

Probably not a need to get the throat checked out unless there is reason to suspect stenosis (and that wouldn't give you a sore throat). However, yearly hearing tests should be done and your nose should be examined frequently for signs of active disease.

Deanne Hull
07-02-2010, 10:11 AM
Well now i have after two weeks of tests, with no answers, a hysterical phone call to my doctor, an emergency appointment with the eye specialist I now have marginal kerastatis in my eye, I have to have antibiotic eyedrops which i figured that I would have to have. I am acutally angry as I do know my body I have been in it for a long time, and I am going to have to be a bit more pushy with my specialist...sorry people just venting my spleen :)

Sangye
07-02-2010, 10:17 AM
No need to apologize. One of the skills you have to build quickly with Wegs is asserting yourself with your docs. The only thing good about something like this happening is that the next time they don't listen to you, you can say, "Remember when?" You get a bunch of those in your history and they start taking you more seriously.

elephant
07-02-2010, 11:15 AM
Good for you Deeanne, it's good to be pushy when you need to be! No need to feel bad about it.

Col 23
07-03-2010, 05:58 AM
Sorry to hear about the eye but pleased you were assertive and got treatment.
Col 23

jola57
07-07-2010, 05:54 PM
Col, please insist on the echo. Deanne, good for asserting with your doc who is first. Like Sangye said, a lot of our damage is silent ind routine yearly checkup is a must for a lifetime. After all regular people have yearly medical checkups, we do too only a bit more thoroughly.

Col 23
07-08-2010, 01:17 AM
I think Ive worked it out. Ill ask my regular GP for the Echo referral not the Rheumy who doesnt think I need one or a referral to an ENT specialist. Like you guys have said it is good to have a base line and if there is nothing wrong it can make you feel a bit more confident about where your at.
So thats what Im going to do next time Im at the GP.
Cheers Col 23

LisaMarie
07-08-2010, 04:21 AM
Well now i have after two weeks of tests, with no answers, a hysterical phone call to my doctor, an emergency appointment with the eye specialist I now have marginal kerastatis in my eye, I have to have antibiotic eyedrops which i figured that I would have to have. I am acutally angry as I do know my body I have been in it for a long time, and I am going to have to be a bit more pushy with my specialist...sorry people just venting my spleen :)
Thanks for venting and fighting...I think all of our biggest fears is that no one will listen to us...we all have our horror stories of what happen when they did not listen....Keep Fighting Deanne!!!!! and vent any time...we all need too...and we all are here to support each other...Have a good day

Jen57
07-08-2010, 07:12 PM
Hi Deanne, My name is Jenny Sparks and Im from Perth as well. Im like you, I am new to all this sort of thing and am nervous as well. Plus Im not to sure how to do a lot on computers. I was diagnosed with WG 13 years ago and have been plodding along ever since. My specialist and Doctors dont seem to have very much time for me and am feeling a bit lost. I thought I would join this site for the support and to see how everyone else copes. Yesterday I saw the specialist at SCGH and they basically took no notice of some new complaints I had, which were due to side effects from taking prednesolone which Im on permanently. It is devestating when the Doctors dont understand.

Its great to see you have kept your sense of humour through all your ups and downs.


It is nice to know there are others out there we can talk to. With friends they dont understand, although they try. My sister is my support, poor girl, I must drive her mad. Although she never complains. I would be lost without her. When things are bad its the little things that matter.

Deanne Hull
07-08-2010, 07:35 PM
Hi Jenny, nice to talk to you, I am seeing a Dr Simon Wei and he has been really good, his offices are at SJOG in Subiaco, I am seeing him tomorrow, as he is dropping down the pred now slowly as i had a flare up last time as he reduced both medications pred and cyclophosphamide at the same time. Unfortunately i have been suffering from two lots of eye problems one after the other which is driving me insane.....but i just have to be patient and take my medication. Its the pain threshold i have trouble with...it wears you out.

Do you have someone to go with to the Doctors, I get someone to go with me everytime as I forgot to tell them something or I can't remember
what they said. I have had my sister, my son, my mum and my girlfriend Andrea, ( not my husband as he is not patient and is likely to be rude and coarse with his language, he is a typical aussie mining bloke, rough around the edges but heart of gold and quite frankly no help at all and to top it of all hates hospitals with a vengence ) but anyway, it does help to write things down before you go and tell them you are not happy with what they are telling you.

My sister is great, i ring her up and moan and cry at least once a week, and she is doesn't mind. Not many people i have found really understand, they think you are going to get well and can't quite understand why you arn't.

Maybe we will have to start up our own group here in Perth... now there is a thought, more friends to go out with.. coffee, movies etc....shopping is always good....

Be kind to your self


Deanne

LisaMarie
07-08-2010, 10:30 PM
Hi Jenny, nice to talk to you, I am seeing a Dr Simon Wei and he has been really good, his offices are at SJOG in Subiaco, I am seeing him tomorrow, as he is dropping down the pred now slowly as i had a flare up last time as he reduced both medications pred and cyclophosphamide at the same time. Unfortunately i have been suffering from two lots of eye problems one after the other which is driving me insane.....but i just have to be patient and take my medication. Its the pain threshold i have trouble with...it wears you out.

Do you have someone to go with to the Doctors, I get someone to go with me everytime as I forgot to tell them something or I can't remember
what they said. I have had my sister, my son, my mum and my girlfriend Andrea, ( not my husband as he is not patient and is likely to be rude and coarse with his language, he is a typical aussie mining bloke, rough around the edges but heart of gold and quite frankly no help at all and to top it of all hates hospitals with a vengence ) but anyway, it does help to write things down before you go and tell them you are not happy with what they are telling you.

My sister is great, i ring her up and moan and cry at least once a week, and she is doesn't mind. Not many people i have found really understand, they think you are going to get well and can't quite understand why you arn't.

Maybe we will have to start up our own group here in Perth... now there is a thought, more friends to go out with.. coffee, movies etc....shopping is always good....

Be kind to your self


Deanne
Thanks for sharing about your husband...mine is scared and not dealing with it well...I go to most of my appointments alone...I print out a list of questions to ask the doc...My mom was first in denial...does not believe it is WG...and feels if it is I will go into remission and it won't come back...nor will I be on meds ...kinda like it is no big deal...as hopeful as that sounds ...it is just not helpful to me now....I am wired that I prepare for the worst and hope for the best.....My biggist fear is that the docs won't listen so I ma trying very hard to express myself in a way they will listen...won't guarrentte that I won't lose it every now and them with the doc......lol....or my family...but will try not too....I have a file folder that goes with me to the doc with questions, articles I have found and of course the dreaded web of insurance crap.....still trying to get answers on Rituxan......I am so glad I found this forum...it is by far the most informative and supportive site !!!!! Thanks

Jen57
07-09-2010, 02:10 PM
Hi Deanne and everyone, thanks so much for replying Im rapt. I think joining this site is going to be the best thing Ive done for myself so far. I will take your advice and write my questions and the answers down as you suggested and maybe it might be a good idea for me to take someone with me as you sugggested. I am on 15mg of pred a day and cant reduce it beacause everytime I do the symptoms come back. I get flu like symptoms and pain in the lungs and cant seem to get enough air plus get so tired I have trouble getting out of bed. The pred gives me heaps of side affects, the way I look is puffy and over weight and I have diabetes and my liver function is really bad as well. I try constantly to reduce steriods but it seems impossible. Its a horrible disease and I find the Doctors are rarely helpful or supportive. Your Specialist sounds very good, I was thinking of changing perhaps I will get a referral to the same specialist your going to see.

The pain must be awful for you to have to cope with, do the doctors give you anything to help? I am on tramal 200mg slow release a day and that keeps me relativley pain free so far, but my friends say that I am a bit slower in my reactions and when I speak etc if you know what I mean. But its better than being in pain all the time, it does wear you down.

I think it would be great to start a support group here in Perth. We should definately discuss it further, ijust being able to talk to someone who has WG has already made me feel better than I have in ages. I sometimes feel so confused and alone with all this and my poor sister has probably had enough of me. I have 2 boys the eldest is 33 and he has 4 kids plus he works 3 weeks away and 3 weeks in Perth so hes very busy with his own life and although he knows Im sick he dosnt realize how sick I am or maybe he realizes but hes so busy he dosnt seem to bother to much with me when I talk to him about it. My other son is 25 and he lives with me still, he has bipolar disorder but is very understanding because he has to live with me he sees the symptoms first hand, but I dont tell him everything because I dont want to burden him to much with things.

Thanks again for replying

Col 23
07-14-2010, 03:51 AM
Great idea Im in for Perth
Col 23

Col 23
08-09-2010, 11:19 PM
Hi Deanne and Jenny
Wondering how you are going. Im still trying to taper the Pred down to 13mg. Last three weeks have had no energy at all.
cheers Col 23

Deanne Hull
08-10-2010, 12:22 AM
Hi Col, I am doing quite well, just getting better over some eye issues, but that seems to be going away quite nicely, after 4 months. I just had my monthly blood test today and the nurse asked me whether I had been walking as my blood was very red and oxygenated. I have been walking everyday for the last three weeks and feeling really well. I will find out on Friday when I see my doctor about where the wg is at. I have been just pacing myself as I am going overseas at the end of the month and need to be really well. I don't go out a great deal besides it has been far too cold anyway.
I am going to Italy, Nice, Barcelona and to London to see my lovely daughter as I haven't not seen her since January and I am so excited. The doctor says it is ok to travel but to wear a mask in the plane, and making sure I have all my medication and paperwork. At the moment I am on about 12.5 mg of pred now as i had to go up a bit to sort out the eye probs. I still put pred drops in my eyes as well. All my other meds are still the same...

I am sorry you don't have any energy, maybe it takes a while to build that up. I am taking a vitamen B ( when I remember ) to give me a bit of energy on some days. Other days I seem to have too much energy and then pay for it the day after and spend all day in bed or on the couch, I just have to remember to stop my self from doing too much. I think these things take time and my eye issues have been extremely frustrating to say the least.

I hope you start to feel better soon I really do...

Sangye
08-10-2010, 12:37 AM
Col, have you talked to your doc? Three weeks with no energy means something is off. I hope you get some answers soon-- I know you're really struggling right now. Got you on my mind...

Deanne, I'm so glad you're doing well! I hope you have a great trip to Europe. :)

jola57
08-10-2010, 01:09 AM
Deanne, I fly from Canada to Europe every year now and just take hand sanitiser with me which I use to swirl in my nostrils every half hour. The masks that are commonly used are not dense enough to prevent viruses and bacteria from invading your system. In the last 3 years I flew at least 14 times and have gotten mild sniffles only once. Maybe the alcohol in the sanitizer helps. We can't pick who we sit close to but everytime somebody coughs or sneezes I pull out the sanitiser and with my fingers swirl around and inside the nostrils. Of course use it often on hands, especially after touching hand rails and such. If you worry about ears, I used to take Sudafed (antihistamine) to make sure that they don't plug up and hurt, but stopped doing it a while back and have had no ear problems while flying. Because of all the meds I take, I just have a copy of my perscription with me with all the meds listed (my doc does that) and of course all the med bottles have my name and what is in them. I have never had any problems at the control points in any of the airports. Enjoy your stay with your daughter and visiting these beautiful places.

Col 23
08-10-2010, 02:15 AM
Hi Deanne, Jola and Sangye

So pleased to hear that you are going for walks Deanne and that you have a wonderful trip to look forward to. I have a daughter coming over from Queensland with our new grandaughter for 4 days in about 10 days and the one in Darwin coming to stay in September for a month with my new grandson. So looking forward to that. Very supportive lovely girls. I keep looking at the treadmill but have put that in the too hard basket for now but still aspire to exercise. I find out what my bloods are doing tomorrow if they come back fine I will just have to accept that as Im lowering the Pred, its knocking me around. I think I will start on the Vitamin B. Does anyone know if a comlex B is better or just B6 or B12? Good idea about the hand sanitizer Jola for travelling. I do think something is going on as Ive had a headache that wont go a way for few days and the pain tends to move around the head. I just find the fatigue is crippling and frustrating, sick of being on the couch as life is passing me by. Lots of weird aches and pains in the body that come and go and the lumps in my legs have not gone away. I see the Rheumy in two weeks and the eye specialist next week. I also get the results of my mamogram soon. Hopefully all the lumps have resolved. Thanks for your replies.
Cheers Col 23

jola57
08-10-2010, 03:07 PM
Col 23, I take B6 and B12 with folic acid, but I rmember Sangaye advocating a compex B. I guess I just don't want to over do the vitamins and also mine come in chewable fruity flavoured pills, the others are this terrible tasting capsules that make me burp with that terrible taste.

Sangye
08-10-2010, 10:57 PM
Always take a good quality B-complex vitamin. Taking additional B6 on top of that is not a bad idea since pred, stress, inflammation, chronic illness and many of our other drugs all deplete B6. Just make sure to keep the doses reasonable. You shouldn't need additional B12 unless you're a vegetarian or have B12 anemia. Most people won't need additional folic acid unless pregnancy is a possibility, or if you're on mtx or something else that specifically burns it up.

The B's all work together. If you take them out of balance, they all get messed up.

Col 23
08-10-2010, 11:04 PM
Thanks for the replies will start on the B complex, Already on folic acid. Couldnt get into doc today so its tomorrow. Grrrrr, nearly lost the plot with the receptionist today, who couldnt get me in until Thursday but lucky for her I ended up talking to another very nice caring one who put me in tomorrow morning. Just another thing to throw out there, last few days I have had major abdominal swelling, I look like Im about to give birth. Any thoughts. Col 23

Sangye
08-10-2010, 11:22 PM
High levels of cortisol cause abdominal swelling. Ever since I started on pred in '06, that happens to me when I get more stressed than normal. It even happened when I was off pred for 2.5 years.

It's also much worse if I eat foods or do things that aggravate Fire, since that disturbs the adrenals.

Col 23
08-11-2010, 04:51 AM
I noticed you take a diuretic Sangye, do you think I should be on one to assist with the swelling? Im going to ask the doc, but its just that I feel like its one more drug. Swelling very uncomfortable, clothes dont fit well and I think its also attributing to lower back pain.
cheers Col 23

Sangye
08-11-2010, 10:27 AM
My first docs wanted me to take a diuretic to help with swelling but I was the same way-- no more drugs!! But now it's not even negotiable. If I don't take one I can't even function. Swelling is a major problem for me and keeps me from doing many activities.

Diuretics may or may not help you much. It's worth a try if your doc feels it's okay. Start at a low dose and make sure you know if it's a diuretic that causes potassium depletion. If so, you'll have to stay on top of it.

Col 23
08-13-2010, 12:57 AM
Had all tests and bloods, anemic and low in B12, swelling being managed. Bloods not too bad considering, so all manageable. Tapered to 12 of Pred today.
Have to endure my 4 days of suffering before it evens out.
cheers Col 23

Deanne Hull
08-14-2010, 06:23 PM
HI Everyone, I am so excited i was crying, my results came back so good yesterday, my Anca is 13 now and everything else has stabilized and I have lost 2 kilos thank goodness. I have been walking everyday. My doctor said I look really good and in six weeks when i come back from overseas if everything goes well, he is going to change my cylophosphamide to a less toxic one. I forgot to ask which one it was i was so happy....he is going to take it very very slow so i don't have a flare up like I had before in which i experienced Iritis, Kerititis and epislceritis in my right eye. It has been a year since I was diagnosed and this is the best I have felt for about five months. sorry its is all about me today, I have never felt so relieved in my life...

I wish everybody was as well as I am, I hope everybody is going okay as well. best wishes love Deanne xxxx

Deanne Hull
08-14-2010, 06:30 PM
Thank You Jolanta for that advice I will certainly stock up on the hand sanitiser, I never every tough railings or elevator buttons always use an elbow or something else, I ahve all my prescriptions and documents organised. The doc says not to wear the mask in the airport but jsut on the plane. Mum says she has seen quite a few people wear masks on planes so I won't be the odd one out. I glad to know we can all travel with this disease, I thought I might never go anywhere again. But this is not going to stop me now thats for sure....

Thank you again for that advice I just love all you people you are all wonderful....

Jack
08-14-2010, 08:15 PM
sorry its is all about me today, I have never felt so relieved in my life...

You are allowed to do that, I do it all the time. ;)
Congratulations on the improving results!

elephant
08-14-2010, 10:21 PM
Deanne, so happy to hear you are doing great! Keep living your life and enjoy!

Sangye
08-14-2010, 10:44 PM
Deanne that's wonderful news! I hope you have a great trip and come back home feeling even better.

Col 23
08-14-2010, 11:09 PM
Hi Deanne
Great news, so thrilled for you, great to have good news stories. Hope you have a wonderful holiday/trip and everything continues to go well.
I felt like doing a little dance for you.
All the best Col 23

Deanne Hull
11-05-2010, 09:43 AM
Hi Everyone, just thought i would let you all know that I am now in Remission and we are now reducing the medication very slowly to avoid any flare ups.
I have lost about 4 kilos and am looking forward to getting my face and hair back to normal...I hope everyone is doing okay...

elephant
11-05-2010, 09:45 AM
How much pred are you on? Are you off all immunosupressants? Gald you are in Remission! Congrats!

Deanne Hull
11-05-2010, 09:50 AM
Hi elephant, I am on 10mg of preds and 75mg of cyclophosphamide at the moment, the doc may change the cyclo to Imuran in dec but we have to take it slowly as last time i had eye problems with the med reduction too much too soon. thanks

elephant
11-05-2010, 09:54 AM
Glad your taking it slow. I bet you are sleeping better too!

Sangye
11-05-2010, 02:00 PM
That's great to hear, Deanne. I hope you continue to do well as you lower the meds! :thumbsup:

Natalie
11-06-2010, 02:28 PM
Good to hear Deanne :biggrin1:

drz
11-07-2010, 06:46 AM
Hi elephant, I am on 10mg of preds and 75mg of cyclophosphamide at the moment, the doc may change the cyclo to Imuran in dec but we have to take it slowly as last time i had eye problems with the med reduction too much too soon. thanks

How slow do we have to go in tapering both? I am about the same dosage now with 12.5 and 75 each day but told the plan is to keep decreasing both and then switch to something less toxic than the Cytoxan. I have no idea what it will be or what will work out best for me but guess it is like everything else and done by trail and error and based upon doctors experience and best guess of what will work best for this patient.

What eye problems did you develop?

elephant
11-07-2010, 07:53 AM
I don't know much about Cytoxan didn't take it this time around. But my experience is that I personally have to taper prednisone very slow. Once I hit the 10 mg mark, I tapered down 1 mg every four weeks. But that was too fast for me so now I am tapering down 1/2 mg every four weeks.

Sangye
11-07-2010, 10:18 AM
drz, how fast you can taper pred depends on what kind of doses you've been on and how long you've been on them. Elephant has been on 10mg for quite awhile, so has to go extremely slow. Even the 1mg every 4 weeks is slower than many people need to go who haven't been on pred that long.

I was on ctx but didn't taper off of it.