View Full Version : confused at the moment please help !!!!!!!!!!

timbo vic aust
02-08-2010, 12:13 AM
hi all wow what a last 4 to 6 weeks its been. sorry i have'nt been on much i cant get on the computer much anymore. my wife myself + 4 kids live with my mother in law squished into a 12 square home until our hou se is to be finished being built by august / september. but the last 7 weeks our eldest number 5 moved in with her husband and two girls 3 + 2 which are a major handfull so 11 people in the house is so stressful for me with working full time and the disease and also getting sick again and coming home to the yelling and screaming of kids and at kids by the daughter and s in law it is all catching up with me . i have been dropping hints tfor them to get out and get their own rental but it;s on deaf ears cause they know how good they have it financially.and it's not our house so i cant boot them out which i would love to do because as far as i'm concerned they dont have any compassion or concern for how i feel with my sickness and the wife as well has enough to worry about with our family let alone all their problems as well way. well enough of my whingeing ans bitching last i spoke yo you all i was going for my kidney checkup rhueamy sent me for tests blood and kidney it seems the bloods for the disease are all ok and under control but the kidney tests found the anti inflammatories he had me on to get me moving on my legs better which were 15mg of Mobic daily is stuffing up my kidneys he said we have to stop them immediatly . so i have been of them for three weeks now and my legs are slowly getting worse again. he said there is nothing we can do it's either put up with the bad legs or have the kidneys pack it in. the other thing that has been bothering me is i have been so crook for about 6 weeks now but i saw the rhueamy on the 18/1 and he said all my bloods were good my blood pressure was excellent. i told him there is something wrong so he asked me to book an appointment with ent clinic which i am still waiting for . i saw my local gp and he said my chest was clear but there was something going on and to follow up on the ent app he wanted to put me on antibiotics which i did'nt take the thing that worries me is the rhuem and the hospital are not keeping in touch with my gp all the things he knows about what is going on is what i tell him evey time i see him . i thoughtn maybe a flare but the rhuam said all my results were ok but i have most of my symptoms back again from november till now he has backed off the pred to 37.5g and from the 18/1 down to 30mg i dont know if it;s because he's backing it off so quick or what but from when he dropped it from 50mg thats when my problems started. when i breath it's like burning in my throat all the time i cant breath deep it hurts too much i have whopper headaches nearly every day i have bad sinus with crusting not much bleeding though i get the occasional blurry vision i dont have to do much to be really badly short of breath after drying myself after a shower i am huffing and puffing like i have just run a marathon i have been getting pain around my kidney area not much but niggling my legs are worse and the most worrying part is the fatigue is really bad now i get the nods at workall the time and weekend are the worst i cant get out of bed on a sunday i take my methoextrate on a saturday dinner time and it stuffs me up for days now i feel crook all the time now from all the drugs i get bad hearturn all the time thet put me on the acid blockers which helped with that but i've gone from eating like a horse to not eating regular meals at all cause of feeling crook in the tummy all the time i know i might have to do something about working full time 5 - 6 days half day saturday i am getting there late nearly every day because i just cant get up isleep 7 - 8 hours a night and still wake up like i have'nt slept at all sorry for the whining but i need to vent my frustration thanks for listening all :)

02-08-2010, 12:55 AM
Hi Timbo,
Sorry to hear about all the stress on top of your medical problems.
It sounds very much like the drugs you are taking at the moment are not controlling your Wegs. but I am not familiar with Methotrexate so don't know what you should expect. In the days when I was having flares, the treatment was Cylophosphamide which worked very quickly, but with quite a big risk attached!
I would agree with your doc stopping the Mobic. Non steroidal anti-inflamatories are generally a bad idea if there is any kidney involvement. The renal clinic I attend has notices up on the subject. I have to make do with Paracetamol.

02-08-2010, 02:10 AM
Sorry Timbo, I agree with Jack. My alarm bells are going off and so are yours. You know that you are not doing well and I think the Methotrexate medicine is not keeping your Wegeners in control. It sounds like you need cytoxan or the new Rtx drug that Sangye is taking ( I understand it is a hard drug to get a hold of because of the cost). The prednisone is not going to control your Wegeners and you can't keep going back up to 50 mg of prednisone to control the Wegeners. I too flared big time just on 40 mg Prednisone and Imuran. Need to get to the Rhuemy first and see a a Wg specialist. Don't remember if you see a Wg specialist.
Sorry for all the stress that you are going through! Need to get this taken care of tomorrow before you crash. My last crash was last year and I waited way too long. So take care of yourself first, because you can't take care of your family if your falling apart. I wish you the best and you need to vent.... we are here to nag and give support.

02-08-2010, 02:22 AM
hi timbo
i can identify with what is happening with you at the moment as im in the same boat just now spent months on methoextrate taking on saturday feeling rough till about wednesday
then had flare up in oct 09 now on cyclophamide and preds and a shed load of oher tablets because found i have kidney involvement i sleep for england !!! legs work when feel like it
cough drives me mad crusting nose bleeds sinsus and the headaches seem never ending
been at work most of the time but had to give in just now need time out believe me that a big think for me to say as im the worlds worse for pushing myself and then having to pay the consequences (usually several days in bed)
my bloods always look reasonally normal never represent what happening with me my wg consult happy to go with what im saying is happening and bloods !
its taking me a long time to understand how to take one day at a time and ask and accept help
luckily i have a great support system of family and friends and work colleagues
found this site a life saver some days often think must be imaging symtoms then find someone whos had or felt the same

hanging in there you are not the only one who feels confused i sometimes feel like screaming to hope your feeling alittle better soon DEE

timbo vic aust
02-08-2010, 03:04 PM
yor not wrong dee im the same i push myself all week and spend most of the weekend in bed or sitting in the chair feeling sorry for myself . i dont want to stop i cant i have a family to support and i appreciate all the info from everyone good or bad hey i will cop anything on the chin so speak up everyone i wont hold it against you plus we have a 4 yr old daughter who is down syndrome so i have to keep going for her too . quick rundown we have 5 kids girl 23yo boys 18 17 14 and bubby 4 i had vacsectomy 1998 it reversed itself 2005 along came bubby the rest is history so to speak . dee i am on the rituximab which sangye is on and methotrexate tablets . thanks jack and elephant too :)

02-08-2010, 06:32 PM
Timbo you sure have a full house and full plate. If ever there was a time to listen to you body it is now. It does seem like you are gearing up for a flare. I would talk to your doc about methotrexate not keeping your Wegs in check. Be sure to tell hi every detail of your aches and pains.

02-10-2010, 10:34 AM
Oh Timbo, I'm sure sorry to hear how tough things are right now. You have some major stress. I "outrun" the Wegs drugs when I'm under more acute stress than normal.

My alarm bells are going off as well. You have too many symptoms of active Wegs to ignore them.

I'm particularly worried that you're crashing by the weekend. Doing that week after week digs a deeper hole and makes it harder to recover. Is there any way to cut your work hours a little on a temporary basis so you can get the Wegs under control? I'm sure you've probably thought of that and a million other solutions, but I just thought I'd throw it out there. I wish I could help you more.