Hello

[Laura C]

Hi everyone. My name is Laura and I am 48 years old and was recently
diagnosed with a mild form of Wegener's Granulomatosis after suffering
for the past 3 years with various symptoms. My sister lives in Brick,
NJ and found your site and sent me a link. I am so glad that she
found your site. I am currently seeing a doctor in NYU who
specializes in Bechets and Wegener's. I am currently taking
prednisone and bactrim and was recently taking methotrexate but it
wasn't working. My doctor told me that I have to be patient as every
6 weeks he changes my medicine until we find the right combination for
me but my patience is running out. I am extremely tired all the time
and have no energy to do anything at all. My joints hurt all over and
it is difficult for me to type. I have pain in my eyes and no one
seems to know why and have lost alot of my sight in my left eye in the
past 6 months and have had hearing loss in my left ear as well. I am
looking forward to chatting with everyone here and am here to help
anyone if I can do so. Thanks to the creator of this group. Nice to
meet everyone. Laura

[Barb]

Hi Laura,
I see that Kathy sent you our link. Any correspondence can be sent
directly to me at autoimm...@aol.com
at ANY TIME! You need to be proactive and be your own advocate. I have
lot my vision many times. I would love to help you on a more personal
level. You are definitely not alone. If you are willing to step up and
help yourself I am here.

[Hopeful Sojourner]

Welcome Laura!  You have found a great support group.  Please give us your details and ask any questions that concern you.  I know you have already given us some of your story and believe me, we all know how slow the diagnostic process and the treatment plan process can be.  Many of us have fatigue and joint pain.  We understand how your pain and we want to let you know you're not alone.  I see Barb has already contacted you.  She is our "fearless leader".  She can answer almost any question and if not, she knows where to find the answer.  She is a great source for referrals also.  Barb and the group have provided me with the understanding and hope that I have needed to fight this uphill battle.  Know that we are all pulling for you!

Sending you my best,

Thomas

[AUTOIMM...@aol.com]

Hey there Thomas, so nice to see you! How the hell are ya? Thanks for responding, Laura can use all of our help!

 

Hope to talk to you soon! All of ya!

 

 

Barb----Human beings by changing the inner attitudes of their minds can change the outer aspects of their lives.
****William James***

[Hopeful Sojourner]

I was just thinking about you.  I've been kinda down.  A new med, Tyvaso, has been approved and my doc wants me to have it.  I did another echo and my PAP is 70.  I did a 6 minute walk and it was 242 meters.  My last was 400 meters and my first, 4 years ago was 900 meters.  I'm sure I don't have to tell you where I'm at.  I'm almost ready to stop the treatment.  I've about had enough.  I can't put Debbie through much more and I'm just worn out.

I certainly hope you and Keith are doing well.  I really love your new website.  Sorry to hear about the hard drive crash.  It's always something.  Hey, send me your number again and I will call.  I have it somewhere, but I can't even find my ass these days.  LOL

Hey, we really do love you guys!

Tom and Debbie

[Laura C]

Nice to meet you all and thank you for your quick responses. I am so
happy to have found people like me and a place where I can find help
and ask questions. As for details - where do I start - it's a long
story. I am going to put together a brief outline of what has
happened to me the past 3 years and send it to you all within the next
day or so. I will tell you that I am now seeing a doctor in NYU
Center of Joint Diseases by the name of Yusuf Yazici and who
specializes in Bechets and Wegeners. Prior to that I was seeing Dr.
Robert Lahita in Newark Beth Israel but we bumped heads and he had
just become the Chief of Medicine at the hospital and his schedule was
very full and we just didn't seem to hit it off. I felt like I was
not getting anywhere with him as much as he claimed I was a "very sick
girl" he wasn't doing anything for me so I looked for another doctor
and my sister found Dr. Yazici. Unfortunately I am unsure if he is
the right doctor for me either and maybe it's me because I am unsure
as to what should be being done for me right now but I think I should
be having more done. The only treatment he is giving me right now is
every 6 weeks I see him and he gives me a sheet to complete with how I
am feeling what meds I am taking etc. and I complete the sheet and
then he sees me for a quick sit down. Oh and prior to my visit with
him I have my blood work done and a 24 hour urinalisis and that is
sent to him. I was on Methotrexate 10 tabs 1x per week and 20 mgs of
prednisone and bactrim 1 tab 3xs per week. My ANCA showed a decrease
but the symptoms were worse than ever. I was in so much pain and so
tired all the time. I told him and he told me that we have to treat
the disease first and then the symptoms and that it will take time and
patience. I asked if I should see a rhumatologist and could I
possibly have another disease like RA or something because of the
joint pain but he told me he didn't believe so that it was from the
disease and he would do something about the joint pain when I saw him
next and that I should ask my primary doctor here in NJ for something
which I did. He also doesn't prescribe any pain meds for me, my
primary doctor has me on percocet 10/325 4xs a day. I have been on
oxycodin and other pain meds but nothing really helps. I saw a pain
management doctor and she gave me so much pain medicine that I would
have walked around like a zombie had I taken it all so I never went
back to her. I don't want to be in pain but I don't want to be hooked
on pain meds either - I don't know I guess there is no in between.
The most horrific symtom right now is being so tired all the time and
having no energy to do anything together with the joint pain. So I
have been seeing Dr. Yazici and then the following week after he told
me that my ANCA had decreased which was a good thing I thought, he
took me off the methotrexate and told me it wasn't working and that he
wanted me to gradually decrease the prednisone from 20mgs to 15mgs for
two weeks and then to 10mgs and to continue the bactrim. Well I was
already feeling like crap on only 20 mgs of prednisone and tired but I
figured ok I will do what my doctor tells me to. My primary doctor is
a sweetheart and I love her to death but she has no knowledge of the
disease and trys her best to help as much as she can. Her concern
over the past 3 years has been that I have been on prednisone so long
with my dosages going up and down from the lowest 10mgs for only a few
days to very high doses. So I did what Dr. Yazici wanted and I
decreased the prednisone and I couldn't even get out of bed. The pain
in my joints increased, my memory lapsed and I just wanted to die. I
am so depressed as there are times when I feel like I am crazy and
this is just all in my head and no one seems to know what is really
wrong with me. Thank God for my sister as she has been so good to me
and so helpful in finding your site as well as some other information
but I know I have to learn to do things myself too. I also have a
husband who doesn't understand my illness and is not very supportive.
I think he doesn't want to believe I am so sick - I don't know but he
never was really good with dealing with anything tramatic and that
makes it even harder for me as I feel resentment towards him and I
guess he also feels the same at times and I don't blame him because I
know I would feel the same way probably if the shoe was on the other
foot and he was laying around all the time. I have tried to get him
to go to the doctor with me so he can listen and learn about auto
immune diseases but he always has an excuse. I told him about you all
and the site and the support meetings and that I am going to attend
them and would like him to go with me - hopefully he will come.
Anyway enough about that for now back to my meds. So I decreased the
prednisone and was supposed to do another decrease as two weeks had
passed but I was unable to do anything and felt so horrible. My mom
and sister told me to contact the doctor but I am always worried that
I don't want to be a "pain" or "annoying" or just one to complain
constantly so I usually just continue until my next visit to the
doctor but this time I felt awful and I called him. He told me to go
back up from 10mgs to 20mgs again and continue on that until I see him
on Sept. 25th. I am on 20 mgs now and feel no better than before. I
am so tired all the time and sleep constantly and have no energy to do
anything. I am also still on the bactrim. I again voiced to him
concern that I am growing impatient with myself and that I don't want
to live like this anymore and that I have been going through this for
3 years with no one really helping at all and I feel like I am on an
endless roller coaster ride. Don't get me wrong there are some good
days but more bad. I also had a partial hysterectomy a few months
back and that kinda sent me back over the hill as prior to that I was
working part time and feeling a little more like myself. I just don't
know if my doctor should be doing more than just changing medicines.
He has never done any tests on me at all. I recently told him that I
have these "temors" or something like restless leg syndrome only it
involves my whole body and it isn't every day or every night and it
only happens at night when I am going to sleep where my body jerks
suddenly. It has woken me up a few times but like I said it is
random. I never really thought too much about it. Well he told me to
see a neurologist and I am currently seeing one in Jersey City who
sent me last week for an MRI and MRA of my brain with and without
contrast. They asked me if I am claustrophobic and I said yes but I
fell asleep in the tube and they couldn't do the test as my body was
shaking because I was dreaming. They finally got me to stay awake long
enough to do the test. The intern was laughing because he said he
never saw anyone fall out the way I did. I just had no energy at all
and couldn't stay awake a minute longer. I also went for a test on my
balance and this week I have one on my nerves. At least this is
making me feel like someone is doing something besides just giving me
medicine to take. So I guess my question to you all is whether or not
this is the usual treatment that I am getting from Dr. Yazici or
should there be some other tests that he can be or should be giving
me. I have never had anything to really confirm that I have Wegeners
except for my ANCA. I have never had any liver biopsy done. Dr.
Lahita was actually the one who told me that I have Wegener's but that
was right before we parted ways and he had told me that he didn't
really believe I had Wegener's as I was like a piece of a puzzle that
fit into many other places other than one and he never wanted to put a
label on my disease. I think he just told me it was Wegeners as I was
adament about getting a diagnosis. When I went to Dr. Yazici and told
him, he said yes it is Wegener's but there are different forms and
stages and yours is a mild form of Wegeners. So I am confused, scared
and depressed right now and at the same time thankful to have found
you all to talk with. This email is probably all over the place right
now as my thoughts are all over but I needed to just get them down.
Thank you for all your support and help. I will write more soon.
Thanks for being there and listening. Laura



On Sep 18, 9:40 pm, Hopeful Sojourner <hopefulsojour...@gmail.com>
wrote:

> > meet everyone.  Laura- Hide quoted text -
>
> - Show quoted text -

[lg]

I am sorry, i been out of town for few weeks so that is why i have not been checking. 

I understand how frustrating and painful it is to try and live with the fatigue and pain while the doctor finds the right combo. Even than, it might work for 5 years or 2 months than have to change it around again...so this is going to be your life off and on. I am sorry. 

 If the pain is bad...where you cannot move to do regular easy chores...such as walk your dog, make bed with help etc than you might ask for pain medicine to help to take some of the pressure off due to pain. Pain can create fatigue in itself because it wears you out trying to ignore it or deal with it. 

 If you like this doctor and feel they are helping you...than speak to him about the fatigue/pain now....and hopefully he will offer you some suggestions what would work for you. I have tried few alternative things like hypnosis and recently a friend of mine who's husband is acupuncturist  said he is having good luck with some autoimmune diseases. I have had mixed results in the past...depends on the dr , i think. 

Massage right now....might allow you to relax all your body so you can rest and beat the fatigue for few days at least.  

I have it too...in fact, i was to go home few days ago....and got sick so waiting till i am well enough to drive home.

  Best advice i ever got was every day do something YOU LIKE....that makes you feel happy like gardening does it for me...or i enjoy walking my dogs....art does it when i am very bad. You see the drift...? But it will make you feel good about yourself and that is so important.

 Hot baths with epsom salts help me...bring in good book and just read while i keep adding hot water for few hours....make sure you use nice candles if that cheers you up too ...or some relaxing music.  Get netflix and watch your favorite movies! 

There are many things we can do when sick or fatigued. I often try and fight the fatigue...but you have to know your limits or at least some of them. Like i walk my dogs....and have got sick out walking them...so i carry a back pack with all possible meds in it. I have had to use it more times and now realize that if i get sick it may not be fun but i will be okay. 

 One time i passed out from pain....woke up and my 3 dogs had laid down surrounding me. Talk about feeling loved and protected! After that experience i lost a lot of my fear and now walk them where ever as long as i get cell phone coverage.

  Can you explain to those who do not know what your disease is.....just short explanation that would be comfortable for you. It is one that they play around and think i may have as well..so i know a bit about it but not a lot. 

 Sorry if i was not much help..but really speak to your main doctor .. internist or Rheum about fatigue/pain....so they can give you something now while the figure stuff out. i am sorry that you are going through this....please keep in touch and let me know what is  going on with you, lg