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View Full Version : Finally getting off cytoxan ! and lowering preds



DEE
08-24-2010, 06:26 PM
WELL , WENT TO SEE RHUEMY MONDAY TALKED ABOUT STOPPING CXT AND LOWERING PREDS
HE WAS GOING TO SUGGEST MYCOPHENOLATE- CELLCEPT OR LEFLUNOMIDE -ARAVA
OR MAYBE AS WG CONSULT SUGGESTED AZATHIOPRINE-IMURAN
SEEING WG CONSULT THURS PM
HE GAVE ME SOME LEAFLETS TO READ JUST WHAT U NEED WHEN U NEED CASTARACT SORTING OUT AND BRAIN WENT INTO DUMMY MODE DID NOT ASK ANY QUESTION EG HOW DO YOU TAKE THESE DRUGS FOR WHAT THE PROTOCAL FOR COMING OFF CXT !!!
BUT BEFORE YOU SCOLD ME FOR NOT ASKING THE QUESTIONS WHICH I SHOULD KNOW BETTER TO DO
THE IDEA OF APPOINTMENT WAS TO PREPARE ME FOR WG CONSULT APPOINTMENT WHICH I HAVE ALREADY MADE A LIST OF QUESTIONS AGES AGO
I THINK THE IDEA OF CHANGE IS ALITTLE SCARY MAYBE THATS WHY PREDS HEAD KICKED IN :predrage:
ANY ADVICE WILL BE WELCOME AS SEEM TO BE AFFECTED BY BRAIN FOG AT THE MOMENT :crying:
DEEx

DEE
08-24-2010, 06:29 PM
Told you i had brain fog meant how long do you take new drugs for

elephant
08-24-2010, 08:26 PM
When the switch you to a drug like imuran, I was told they usually put you on that for two years and try to get you off all WG medicines. Of course in those two years they are still checking you out for any kind of WG flares. Sounds like you are prepared to see the WG specialist. You will do fine.:hug3::thumbsup:

DEE
08-24-2010, 09:26 PM
Thanks Elephant head abit clearer now think abit of fear of the unkown:unsure:
even though i know it will be for the best in the long run and also give me more chance of getting other issues sorted DEEx

Sangye
08-24-2010, 10:30 PM
Dee, that's great news. It's better to ask your Wegs doc all those questions anyway.

I understand the fear of the unknown thing. When they put you on a drug you're afraid it'll kill you, and when they take you off it you're afraid the Wegs will kill you! And just not knowing the side effects, etc.... It's the "devil you know versus the devil you don't" thing.

Lightwarrior
08-24-2010, 11:58 PM
BUT BEFORE YOU SCOLD ME FOR NOT ASKING THE QUESTIONS WHICH I SHOULD KNOW BETTER TO DO
THE IDEA OF APPOINTMENT WAS TO PREPARE ME FOR WG CONSULT APPOINTMENT WHICH I HAVE ALREADY MADE A LIST OF QUESTIONS AGES AGO
I THINK THE IDEA OF CHANGE IS ALITTLE SCARY MAYBE THATS WHY PREDS HEAD KICKED IN :predrage:
ANY ADVICE WILL BE WELCOME AS SEEM TO BE AFFECTED BY BRAIN FOG AT THE MOMENT :crying:
DEEx

Dee, Stop beating yourself up :hug2:You had the right questions ready for the right doctor, if you would have remembered to ask the doc you saw yesterday these questions it might have muddied the water so to speak. This way you ask the questions to the expert and you will have his/her answers to remember :thumbsup:

DEE
08-25-2010, 01:02 AM
THANKS GUYS its now 24 hrs after appoinment fog clearing abit , just had two visitors they say the same asyou .
They can see were the fear of the unknown comes into play as they have supported me from the beginning like you guys
ive come so far after a rough six months just feeling my feet slightly so to speak:smile1:
i just dont want to rock the boat and wake that dog up !!!
fingers crossed for thursday that the cultures come back with the right answers
taking my own PA with MY SON :wink1: he never leaves if theres quetions to be will keep you up to date
DEE x

Fran
08-25-2010, 08:10 PM
Hello Dee, Just wanted to say hi and wish you well for your appointment tomorrow. It's so difficult isn't it when these appointments cause so much apprehension just when you need it least ( me for one) but I am sure
you'll be fine with your son by your side. Wishing you Good luck !! (from way down the coast !!)

(just feeling my way round as not used to pc's or forums being of a certain age !!)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

DEE
08-25-2010, 11:13 PM
Thanks Fran keeping busy today will let you knoe what happens DEE x

elephant
08-26-2010, 02:37 AM
Dee, sleep well tonight. Glad you will be with your son too.

DEE
08-26-2010, 05:53 AM
thanks elephant will post when we get back :sleep: DEEx

DEE
08-27-2010, 05:27 AM
OK HERE GOES
COMING OFF CXT TODAY MOVING ONTO MYCOPHENATE MOFETIL (CELLCEPT) TOMORROW
NO BLOOD IN URINE NOW GOING TO KEEP WATCH ON THAT-SMALL AMOUNT OF PROTEIN FOUND
BLOODS AS EXPECTED JUST NEED TO KEEP WATCH ON LIVER RESULTS
AND HAVE FASTING BLOODS DONE AGAIN:sad:
TRYING CELLCEPT AT 1000mg FOR THREE WEEKS GRADUALLY INCREASING TO 2000mg
TESTS FOR USING IMURAN CAME BACK SO CAN USE THAT IF THINGS DONT WORK OUT HE SAID WE NEED TO KEEP CXT FOR EMERGENCY AS AT THE MOMENT WILL LEAD ME INTO MORE SERIOUS SIDE AFFECTS IF I STAY ON ANYLONGER
BUT THEY HAD NO OTHER CHOSE BECAUSE OFF HOW BAD MY CONDITION WAS
SEES NO REASON EYE OR DENTAL PEOPLE SHOULD NOT BE ABLE TO DO WHATS NEED AS LONG AS THE COVER ME ANTI B WISE BEFORE AND AFTER TREATMENT SO NEED TO SEEING GP ON TUES MORNING
DO FINGERS CROSSED GOING TO BED SHORTLY INFORMATION OVER KOAD
PS PREDS STAYING AT 20MG SAID WOULD BE TAPPERING SLOWLY
THANKS FOR ALL YOUR SUPPORT WILL LET YOU KNOW HOW I GET ON :scared: BUT HAPPIER IF THAT MAKES SENSE DEE x

DEE
08-27-2010, 05:33 AM
PS FORGOT TO SAY WG CONSULT TOLD USE THAT HE INHERITED A PATIENT FROM ANOTHER PART OF UK WHO HAD BEEN ON CXT FOR SEVEN YEARS !!!!!! they had used cxt low dose as maintainence drug!!!!!!!!

Jack
08-27-2010, 06:07 AM
Good news DEE and it sounds like a reasonable regimen. Hope you get on well with the Mycophenolate and can perhaps eventually get off that and the Pred too.

Seven years on ctx does not bear thinking about. You would have to start thinking about taking legal action if you were in that position.

DEE
08-27-2010, 06:30 AM
thanks Jack ten months on cxt and six on mtx was enough for me and i know preds tappering has to be slow but i will go with that :thumbup:
i ask at pharmacy the best time to take talets and he said atleast twelve hours apart is that what you do ?

Jack
08-27-2010, 06:38 AM
To be honest, because I take the slow acting type (Myfortic) I don't keep to a strict time table. Once in the morning and once in the evening is about as accurate as it gets.

elephant
08-27-2010, 07:02 AM
Dee glad things went well for you. I take cellcept morning and night about 12 hours apart. I am on 2000 mg of cellcept. That is awful to hear about the guy on cytoxan for 7 years.

Sangye
08-27-2010, 07:25 AM
Dee, I'm SO glad you're getting off ctx. I'm also glad they're not tinkering with the pred until you are established on Cellcept.

Reading about the Weggie on ctx for 7 years actually made me shout out loud. Apologies to my dogs and bird.... The doctor(s) who did that should be sued. Anyone doing a cursory search of ctx and Wegs on the internet can see that is outrageous.:predrage: That poor person. I wonder if they even know...

elephant
08-27-2010, 09:06 AM
My guess they did not know. I would not know if I was not informed by my doctor and this forum. My local Rhuemy told me all the complications being on cytoxan...plus having a kidney transplant for 21 years and all the immunusuppressant meds I have been on just add up to be a bad deal.:huh:

Sangye
08-27-2010, 09:30 AM
Even my lousy first rheumy explained it all to me.... Man, I feel so bad for this person.

DEE
08-27-2010, 02:56 PM
i dont know any more we were talking about it in conection to the fact that things could go horribly wrong if i stayed on it any longer and knowing my track record it would :rolleyes1: im just as pleased about maybe been able to get my eyes sorted out sooner than i thought
starting cellcept this morning planning on having quietweekend as hubby home extra day next week as its one of uk bank holidays so he get the monday of work :thumbup: will let you know how i get on yhanks again DEEx

Fran
08-27-2010, 07:18 PM
Hi Dee - good luck with the cellcept - have a nice bank holiday - hope the sun shines and this awful rain stops so you can have a nice few days to relax with your husband and adapt to your new medication...Fran

DEE
08-28-2010, 10:47 PM
well first day of meds change over only thing noticed is i felt abit sick when i first got up and joints abit more painful but i think that what happened when i lowered preds before
only lowered by 2,5mg
its about 2pm and i ready for a nap :sleep: catch u later DEEx

Jack
08-28-2010, 11:13 PM
its about 2pm and i ready for a nap :sleep:
I think we must all be the same. I've just managed to keep awake to watch the F1 race qualifying (car racing) and now I'm going to fall asleep in my chair for an hour.

Sangye
08-28-2010, 11:30 PM
Dee, I thought you said they weren't lowering your pred yet because you were starting on Cellcept. It's not ideal to change both at once. Also, I assume they stopped the ctx. Did they tell you it takes 4 weeks for the Cellcept to get fully up to speed? It doesn't do much for the first couple weeks.

If the joint pain is due to lower pred, it'll go away in a few days.

elephant
08-29-2010, 12:19 AM
That is what I was told when I went on cellcept it takes about 4-8 weeks to kick in fully. I think it took me 8 weeks to work.

Sangye
08-29-2010, 12:28 AM
Yes, and since they're starting you on a lower than normal dose of Cellcept, it makes the gap even larger. It's going from the strongest drug at full-dose (ctx) to a drug with much less punch even at its fullest dose.

DEE
08-29-2010, 04:56 AM
they lowered preds week before but staying on 20mg for a month
seeing wg consult in three weeks depending on blood results if any problem he will see me before
said he needed to get me on 2000mg !!!
maybe today is just an off day because i dont feel as though im fireing on any were near all cylinders :unsure:
Jack i missed F1 but managed to see some of the rugby
DEEx

elephant
08-29-2010, 08:00 AM
I am suprised that they didn't start you right off with 2000 mg of cellcept. Your on 20 mg of Prednisone. Dee keep an eye out if you start to feel more tired.

Sangye
08-29-2010, 09:58 AM
I'm surprised by that, too. To take you from the strongest drug (ctx) to a milder one like Cellcept, they usually start with the highest dose of Cellcept and make sure the Wegs stays controlled before lowering the dose. 2,000 mg is the usual therapeutic dose. They'd usually put someone on 1,000 mg if they've demonstrated very well-controlled Wegs for awhile and want to see how little is necessary to maintain it.

Jack
08-29-2010, 07:40 PM
I started on 2000 and dropped to 1000 after a year or so of no problems.

DEE
08-29-2010, 08:37 PM
just checked diary and meds box defenately 500mg twice a day have wrote in diary at time of appointment to raise to 2000mg at next review in three weeks:confused1:
Elephant why did you mention about been tired
seeing gp on tues morning will ask him about doseage DEE x

elephant
08-29-2010, 09:49 PM
I was thinking if you were more tired it could be a sign your wegs could be acting up. But with all that has been going on with you in the last 6 months, being tired could mean many things. Dee can you leave a message with your Rhuemy (weg specialist) nurse about the dosage. Ask why he started out with 1000 mg instead of 2000.

DEE
08-29-2010, 10:06 PM
checked notes again says 1000mg to rise to 2000mg would be taking for two years or lifetime depending if not working could use Imuran
rhuemy said off cxt for two weeks before cellcept started wg wanted to start and build up
cant contact until tues as public holiday mon seeing gp 8.30 tues morn if he cant help will ring wg straight away tues !!

elephant
08-29-2010, 10:39 PM
Ok, Dee. Sounds good. Rest good today. :hug1:

Sangye
08-29-2010, 10:39 PM
I just don't like the sound of this. They wouldn't take you off ctx for so long because they couldn't get the Wegs under control. And that was with ctx! And now: no ctx for 2 weeks and then 1/2 the usual dose for Cellcept. And even that takes 4 weeks to fully start working.....

They kept you on a highly toxic drug for so long and are now pussy-footing around with a much less toxic one! I'm glad you're going to ask for a thorough explanation, Dee. It just doesn't make sense and sounds like a recipe for waking up a Wegs dog that has barely fallen asleep. :unsure:

DEE
08-29-2010, 11:04 PM
:confused1::confused1::confused1::confused1: beginning to doubt myself now !!! he gave prescription for cellcept and told me to take that night
said we had to stop cxt because been on so long and was leaving preds the same
would i be right in thinking that you would only take cellcept on its own that i definatetly should have stopped cxt
just asked my son who was with me he took it that i had to stop cxt any more advice

Sangye
08-29-2010, 11:12 PM
It depends on your WBCs. If the ctx had lowered them too much, they might have to let them recover a bit before the Cellcept lowers some of them (the B cells).

I don't think they ever use ctx and Cellcept simultaneously. I remember when Dr Seo switched me from Cellcept to ctx I asked if we'd lower the Cellcept gradually because ctx doesn't kick in for 4 wks. He was like "No, no! Don't take another Cellcept pill." It was dicey because my lungs were bleeding and it would be 4 wks without good drug cover. But I knew it was dicey--he thoroughly explained the reason for the risk. There was no alternative.

DEE
08-29-2010, 11:29 PM
WBC 6.0 last week ,it was the serm gamma glutamyl transfere level he said we had to watch normal range 9-36 mines been as high as 166 but at 129.0 just now thus having fasting bloods as soon as i casn arrange at gp which will be tues am creatinne level at 91.0 and ALT/SGPT 49.0 R B C 3.21 if that makes sense

Sangye
08-29-2010, 11:52 PM
Your WBCs are great-- no problem there. GGT is a liver enzyme. Cellcept does not cause liver problems like imuran or mtx might. So that wouldn't be the reason for the delay in starting Cellcept at full strength.

DEE
08-30-2010, 12:01 AM
ok will give in giving myself brain ache will wait why tues to find out . bloods have been getting better over the last couple of months it was that i had several symptoms that dont seem to stay at bay
maybe a bank holiday weekend was not a good time to change:unsure:

RCOSSIO
08-30-2010, 12:28 AM
Dee...wow after reading this thread its amazing how great of a resource we all are...

Anyway I not here to make a recommendation as I see it...plenty of great one were already done.

When Cytoxan and I divorced, our marriage therapist recommended using Cellcept 500Mg 6x daily...I am not sure if height and weight matters, (mind you I am 6'4" and a muscular 260...maybe a little softer) anyway that dosage has worked out great for me and after one year my Rheumy will decreased to 4x daily. Good luck!

Sangye
08-30-2010, 12:29 AM
maybe a bank holiday weekend was not a good time to change:unsure:
LOL-- That's why last December Dr Seo wouldn't let me try to taper the pred. He was worried about me getting into trouble over the holidays.

Sangye
08-30-2010, 12:30 AM
Oh man, I missed you Richard.... :laugh:

(btw Cellcept dosage isn't weight-based)

RCOSSIO
08-30-2010, 12:39 AM
Thanks Sangye...between you and I...I am blaming my weight increase on Cellcept hahahah....thank goodness there is someone like you smarter than me.

and trust me I miss reading about us weggies....since there is only a few of us.

DEE
08-30-2010, 02:07 AM
ok guys hubby at home with me till tues morn will ring someone if i get anything i cant cope with
thanks for your support DEEx :hug2:

elephant
08-30-2010, 08:25 AM
Huggies Dee!:hug2::hug3:

Lightwarrior
08-30-2010, 05:38 PM
I am going into my third week Cytoxan free and just finished my 6th once a week of 25mg Methotrexate. My rheumy told me to stay at 15 of pred for 3 weeks then drop 1mg every 2 weeks. Saw my urologist who doesn't think that increasing my urocrit (potassium citrate) is needed to reduce my seemingly constant production of calcium oxate monohydrate kidney stones, my rheumy thinks I have gone into high production because the pred is diverting calcium to my kidneys. I have passed at least a stone a week for the last 7 weeks and had a bit of adrenal insufficency two weeks ago.

I have been running temps from 101.7 high to 99 (I normally run between 96 and 97) morning and afternoon since Wednesday (mornings is what has been throwing me since I take my 15mg pred in the am). Of course today I couldn't get ahold of my rheumy so I called my pcp and she told me I would have to go into the ER (even though the nurses and docs know me and treat me well, listen to me and try to move me through quickly, it is one of my least favorite ways to spend my day). My question going in was Infection vs adrenal problem. They did blood cultures which of course I won't know about for a few days, chest xray, lab work and renal ultrasound. I listened to the ultrasound dication which showed strong stream from right kidney to bladder and no stream from left kidney to bladder with increased hydronephrosis over last ultrasound 3 weeks ago. The ER doc thought maybe I'm in process of passing another stone from left kidney. No stream though concerns me and I'll have results forwarded to my nephrologist in AM.

The other concern I have is that I expected my CBC with diff to improve once I stopped Cytoxan, these numbers aren't improving. Am Expecting too much?

COMPLETE BLOOD COUNT
WBC COUNT ** 3.2 (4.8-10.8) K/ul STAT
RBC COUNT ** 2.99 (4.2-5.4) M/ul STAT
HEMOGLOBIN ** 10.5 (12.0-16.0) g/dL STAT
HEMATOCRIT ** 30.8 (37-47) % STAT
MCV ** 103.1 (80-100) FL STAT
MCH ** 35.1 (27-31) p/ml STAT
MCHC 34.0 (32-37) % STAT
RDW ** 16.9 (11.6-14.6) STAT
PLATELET COUNT 189 (130-400) K/ul
DIFFERENTIAL SEGS ** 96 (50-70) %
LYMPHOCYTE ** 1 (25-40) % STAT
MONOS ** 2 (3-7) % STAT
MYELOCYTES ** 1 (0) % STAT
RBC MORPHOLOGY ANISOCYTOSIS STAT MODERATE OVALOCYTES PLT MORPHOLOGY PLATELET CLUMPS NOTED ON PERIPHERAL SMEAR

Sangye
08-30-2010, 08:19 PM
I think your WBCs should have bounced back sooner after stopping ctx, but I don't know how low they were on ctx. You're also quite anemic as I'm sure you realize. What's the explanation for that?

I don't see how a measly 15mg pred is diverting that much calcium. Are they running magnesium levels? What's your potassium doing?

elephant
08-30-2010, 08:29 PM
Lightwarrior, I am wondering if you have a kidney infection and inflammation secondary to the stones. I would be concerned too about the " no stream." I know you are on a high dose of methotrexate maybe that is keeping your WBC low. Your hemoglobin is low.
I think that lowering your prednisone 1 mg every two weeks is too fast esp if you were in adrenal insufficiency.
Are you having any other WG symptoms?

Lightwarrior
08-31-2010, 03:09 AM
I think your WBCs should have bounced back sooner after stopping ctx, but I don't know how low they were on ctx. You're also quite anemic as I'm sure you realize. What's the explanation for that?

I don't see how a measly 15mg pred is diverting that much calcium. Are they running magnesium levels? What's your potassium doing?

On cytoxan at 250mg a day from Dec 14 2009 to March when dose was cut to 200mg a day cut dose to 100mg on 7/25 and stopped on 08/20. Providers say I'm anemic due to cytoxan. My mag and potassium levels are normal. in the chemistry portion of my labs the only abnormal is my protein which hangs out around 5.8 and my Albumin hangs out at low end of normal range or just below.

Lightwarrior
08-31-2010, 03:28 AM
Lightwarrior, I am wondering if you have a kidney infection and inflammation secondary to the stones. I would be concerned too about the " no stream." I know you are on a high dose of methotrexate maybe that is keeping your WBC low. Your hemoglobin is low.
I think that lowering your prednisone 1 mg every two weeks is too fast esp if you were in adrenal insufficiency.
Are you having any other WG symptoms?

I agree that there may be kidney infection secondary to inflammation and blockage from stones. I just finished a 10 day course of Cipro though, last night I had intense pain like I was trying to pass a stone for about 2 hours then it eased up. I wonder if one of the larger stones is trying to make it from left kidney, I struggle to try to pass and then it retreats back into kidney, leaving irritated ureter with inflammation. I worry about lowering too fast also, As much as I want to get below 10 I want to do it right.

No other Wg symptoms, oddly enough underneath all of this I feel stronger and more normal than I have since this started

Sangye
08-31-2010, 08:55 AM
If you feel stronger, then it's not adrenal insufficiency. That makes you feel totally wiped out and weak, even emotionally wiped out and frail. It sounds like the most likely scenario is what you've described-- kidney infection secondary to blockage.

elephant
08-31-2010, 10:43 AM
LIghtwarrior that's great you are having no other symptoms, but you were on cipro for 10 days. I know that it is a powerful antibiotic. Are you still having fevers? Sorry you are going thru this painful kidney stuff. :sad:

DEE
08-31-2010, 11:10 PM
OK BACK FROM GP APPOINTMENT HE AGREED THAT I SHOULD NOT BE TAKING CXT THAT HE UNDERSTOOD THE NEED TO INTRODUCE CELLCEPT SLOWLY GOING TO INCREASE IN THREE WEEKS DOING FASTING BLOODS TOMORROW AND FULL BLOODS EVERY WEEK UNTIL I SEE WG CONSULT 22ND SEPT
SEE GP EACH WEEK UNTIL THEN
FELT A BIT WIPED OUT THE LAST TWO DAYS BUT MUCH BETTER TODAY
GAVE A NEW MED TO HELP WITH BLADDER PROBLEM STARTING TODAY
SAYS ON BOX CAN MAKE YOU SLIGHTLY TIRED WHATS NEW :rolleyes1:
SENDING REFERRRAL TO EYE CONSULT TO GET CATARACTS SORTED
AGREED THAT SHOULD LEAVE DENTAL WORK ANOTHER MONTH A THE LEAST

elephant
09-01-2010, 02:50 AM
Dee least you are getting check out. But wished you were seeing the WG consult sooner. Glad your feeling better today. Hugs!:hug2:

DEE
09-01-2010, 02:55 AM
THANKS ELEPHANT GP LES THANFIVE MINS AWAY AND SPOKE TO WG COCULT SEC THIS MORNING AND IMMUNOLIGST NURSE TODAY AND SHE SAID TO RING ANY TIME
WILL RING WITH FASTING BLOODS ON THURSDAY SO COULD POSSIABLY SPEAK TO HIM THEN THANKS DEE x

Jack
09-01-2010, 03:02 AM
Do you have a problem with your Caps Lock DEE? ;)

http://luckofthelaw.wordpress.com/2010/04/18/email-written-in-capital-letters-gets-woman-fired/

DEE
09-01-2010, 03:16 AM
:smile1:NO JACK EYES NOT SO GOOD TODAY AND CAPS ARE EASIER FOR ME TO SEE

JUST READ LINK WILL HAVE TO BEAR WITH ME TILL HUBBY COMES HOME AND SHOWS ME HOW TO MAKE FONT LARGER TO POST

DID NOT INTEND TO OFFEND ANYONE !!! :mellow:

Jack
09-01-2010, 04:22 AM
Only teasing you. :biggrin1:
If it makes life easier, you just carry on.

DEE
09-01-2010, 04:56 AM
I know Jack was refering to the link above
:cool1: i gained a sense of humour when i was dxt wg
decided to laugh at before i cry at it:thumbup:
tried to find how to make lower case letters bigger

DEE
09-01-2010, 04:58 AM
ok jack ive found were to change it :flapper:

Jack
09-01-2010, 05:06 AM
:lol:

Trouble is, I don't recognise your posts now!

Hammy8241
09-01-2010, 05:10 AM
ok jack ive found were to change it :flapper:


Love it Dee ..... Oh sorry .. Love it:love:

DEE
09-01-2010, 05:13 AM
like to please my friends :thumbsup: night Jack having early night having fasting bloods done wed am going to keep myself away from food !!!!!!!!!! Dee x

DEE
09-01-2010, 05:16 AM
night Hammy !!!!!:biggrin1:

Sangye
09-01-2010, 05:45 AM
LOL-- Dee, you can view the font of any page in a larger size by hitting Control and the (+) sign several times. And make it smaller by (-). That way you don't have to type it in larger font.

I view the forum in larger font, so the letters in these last couple posts are over an inch tall. LOL

Jack
09-01-2010, 06:37 AM
I wish I'd kept my mouth shut now.

elephant
09-01-2010, 07:20 AM
It was a good laugh that I needed Dee and Jack!:lol:

DEE
09-01-2010, 02:57 PM
glad you didn' t Jack it stopped me thinking about FOOD

also takes the edge of other problems
thanks for making me smile DEEx

DEE
09-01-2010, 03:11 PM
feeling abit rough this morning dont know if its coming of cxt going on cellcept or fasting:confused1:
opps and just remembered starting another new med yesterday Solifenacin 5mg for bladder so now totally confused
decided to go for bloods done and chill out for the rest of the day think this body of mine had enough changes for awhile !

pberggren1
09-01-2010, 07:55 PM
feeling abit rough this morning dont know if its coming of cxt going on cellcept or fasting:confused1:
opps and just remembered starting another new med yesterday Solifenacin 5mg for bladder so now totally confused
decided to go for bloods done and chill out for the rest of the day think this body of mine had enough changes for awhile !

What does that new med do for the bladder?

DEE
09-01-2010, 08:06 PM
hopefully stops it been overactive and having a mind of its own !!!! trying meds instead of going for more tests

elephant
09-01-2010, 08:21 PM
:hug2:Dee, the bladder symptoms could be wegeners and prednisone. Hope you eat something yummy after you fast. Let us know how you are doing through out the day.

DEE
09-01-2010, 08:56 PM
shhhh dont tell my son but had a bacon and egg sandwich :drool:
dont know if thats made me feel better or worse going to put head down for awhile will be intouch later thanks DEEx

Sangye
09-01-2010, 11:07 PM
Dee, you might want to do some online research about "overactive bladder." It's been hyped by pharmaceutical companies to sell a drug. Same with restless leg syndrome and a few others. The drug came first, then they began huge advertising campaigns to convince people they have an actual condition that warrants the drug.

Here's one research paper on the phenomenon:
http://www.urosource.com/fileadmin/European_Urology/Editor_s_Voice/PIIS0302283804005226.pdf

The type of drug used is called an anticholinergic. It inhibits part of the nervous system function. The trouble is, it doesn't just affect the bladder, it affects all smooth muscle, like your entire digestive tract and lungs.

Here's some info on anticholinergics and a good list of side effects.
Anticholinergic - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Anticholinergic)

It's likely that you have spinal misalignments that are interfering with the nerves that control the bladder. These generally occur in the lower back (lumbar spine, pelvis and/or sacrum) and the upper neck. You wouldn't necessarily have pain. A chiropractor is the one to check and correct this. I had some bladder symptoms months ago that responded immediately to chiropractic adjustments. "Immediately" meaning "within 10 minutes." And no drug side effects.

elephant
09-01-2010, 11:41 PM
Dee, Sangye suggestions sounds wonderful. I never really had severe back pain in my life but members of my family swear ( not literally, OK sometimes) that the Chiropractors have made a huge impact in their lives.

pberggren1
09-02-2010, 03:45 AM
I have never been to a Chiropracter but I know many that have and they swear that their Chiropracters have been a huge help to them.

DEE
09-02-2010, 04:27 AM
Thanks Elephant and Sangye will read the links later been strange day went to lay down about 11am and then didnt wake up till 5.45 pm
take bladder problem with gp just trying meds to see if it helps
will do follow up if not

elephant
09-02-2010, 08:51 AM
Dee, that is a long nap. Hope you are doing ok.

DEE
09-02-2010, 02:56 PM
think things ok my body has had alot to deal with over last seven days
im hoping things will settle down
i can usually sleep myself round if you know what i mean my dad used to call me the horizontal champ when i was ill could sleep for hours then bounce back
if only we could do this with wg

Fran
09-04-2010, 07:07 PM
Good morning Dee,

Really hope you are beginning to feel better today.http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

elephant
09-04-2010, 08:14 PM
Dee how are you today?

DEE
09-04-2010, 11:19 PM
hi Fran and Elephant
not feeling so bad today main thing is feeling tired and joint pain !
not feeling sick anymore and not spending as much time in the bathroom :rolleyes1:
tabs seem to be working on the bladder prob :thumbsup:
was getting tummy cramps but that has stopped to
joint pain for me seems to depend alittle on the weather always worse if its colder or damp
good news today i have got my appointment this morning for my pre assessment at the eye clinic which we applied for on tuesday the date is 26th oct op would be done one to six weeks later on the first eye and six weeks later for the other eye things move slowly here but quicker than it used to be
had fasting bloods results yesterday glucouse 5.6 which is good for me hubby home all next week no hospital appontment for me :thumbup: but he has one on wednesday :rolleyes1:

Fran
09-04-2010, 11:30 PM
Good news Dee - Fingers crossed things are really improving for you. I go for my eye assessment on 16 Sepember regarding cateracts - you'll have to let me know how you get on when you have them done. Think it was Jack who said it was nothing to get stressed about though, so taking his word for it.http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

DEE
09-05-2010, 12:00 AM
Fran
Elephant has her cataract operation on the 15th Sept , there wil be no stopping us when we can all see where we are going :hug3:

Fran
09-05-2010, 01:28 AM
Dee and Elephant : Do you mean the world isn't this blurry place I've become accustomed to ? How will we adjust - quite easy I think because I'm getting fed-up of it as you both must. My appointment isn't to have them done though, just to re-assess so think your's will be before me. Just look how it's affected my spelling of 'cataract' - it's my eyes (honest ?) ha ha! http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

Jack
09-05-2010, 01:49 AM
It is a very easy operation and I should know because I've had it done four times!

That's the luck of the Wegener's for you.

DEE
09-05-2010, 03:37 AM
It is a very easy operation and I should know because I've had it done four times!

That's the luck of the Wegener's for you.
how long between each op Jack ?

Jack
09-05-2010, 03:53 AM
I'm an unusual and unlucky case!

My fist op used a faulty lens implant, but the company who made mine went broke and were located in the USA so not much chance of suing them. There were others around at the time made by a second company who were successfully sued and gave compensation :(. I suppose I could have tried suing the NHS, but it is not my style and it was no big deal really.

The second eye was operated on after a couple of years and the lens slipped out of position a few weeks later. This is a rare occurrence and was cured by fitting a new lens.

Usually, this op goes without a hitch so please don't read anything into my experience, I just like to boast about it! ;)

DEE
09-05-2010, 04:08 AM
i like it when you talk us through the unknown Jack takes away the what if 's :thumbsup:thanks Jack

Jack
09-05-2010, 05:18 AM
If they make a good job of it you should only need reading glasses afterwards although I opted for varifocals so that I could read, see a computer screen and also see the rest of my office desk space. I usually wear glasses for driving, but I'm sure this is only necessary because the girl who did my initial assessment was in a hurry to get home and made a hash of it!

elephant
09-05-2010, 07:28 AM
I am nervous and excited about the cataract surgery. It has to be done or I can't drive! I will let you guys know how it went. :)

pberggren1
09-05-2010, 09:12 AM
I am nervous and excited about the cataract surgery. It has to be done or I can't drive! I will let you guys know how it went. :)

I pray all goes well for you.

elephant
09-05-2010, 11:30 AM
Thanks Phil, I will be praying for you too!

DEE
09-05-2010, 04:19 PM
had a much better day yesterday , had an early night and slept reasonably well maybe things are starting to settle .its colder here at the moment and that make joint pain worse:rolleyes1:
so much for the british summer:sad:

pberggren1
09-05-2010, 04:43 PM
had a much better day yesterday , had an early night and slept reasonably well maybe things are starting to settle .its colder here at the moment and that make joint pain worse:rolleyes1:
so much for the british summer:sad:

I didn't know that Britain had summer.

elephant
09-05-2010, 08:19 PM
Oh Dee, wonderful that you had a better day! Keep an eye out on that joint pain. :hug3:

DEE
09-05-2010, 08:40 PM
didn't know that Britain had summer

we dont have much of one Phil maybe better tomorrow school holidays finish and the weather tends to get better then we can live in hope
Elephant joint pain no worse than usually

elephant
09-06-2010, 06:35 AM
Just checking Dee, want to make sure nothing is ...opening "it's" eye's from a long nap.....zzzzzzz

drz
09-06-2010, 07:25 AM
I didn't know that Britain had summer.

Phil that is what people say about Canada too, isn't it? (smile)

pberggren1
09-06-2010, 07:55 AM
Phil that is what people say about Canada too, isn't it? (smile)

Actually where I live in Canada we have one of the sunniest places in Canada.

DEE
09-07-2010, 12:15 AM
hi elephant think things going ok felt rough first few days but think things settling down seeing wg consult on 22nd am to be trueful its me eye that are getting on my nerves watering all the time did that happen with u

Jack
09-07-2010, 01:06 AM
I think that tearful eyes are something that goes with Wegener's. Lots of people on here seem to have suffered from it and it goes along with all the other problems with the plumbing in the head - ears, sinus, tear ducts. Mine went away after about four years :) .

DEE
09-07-2010, 03:51 AM
:ohmy: Roll on 2014 Jack on no I will be nearly sixty then :flapper:

elephant
09-07-2010, 07:13 AM
Dee, I never had that problem with the tears. I am so excited about getting the left eye done sept 15. I agree with Jack on the eye thing.

pberggren1
09-07-2010, 08:07 AM
DEE, I had surgery to unblock my left lower tear duct. It did not work for me. I would say if you can live with it don't bother having the surgery becasue the surgery can trigger the Wegs and may not work even after 5 surgeries.

DEE
09-07-2010, 04:45 PM
Thanks guys DEEx

Jack
09-07-2010, 05:50 PM
I opted to go without the surgery. I decided that it was a problem I could live with.

DEE
09-07-2010, 10:58 PM
ok agreed to live with it:mellow:

jola57
09-08-2010, 12:54 AM
I think it is a good choice Dee.

DEE
09-08-2010, 06:16 PM
hi guys
ok had rough night after having hot sweats on and off all day yesterday
spent most of my night in the bathroom !!!!!!!
cough not getting any better infact driving me mad coughed so much chest and ribs hurt and no before you ask not coughing up blood just loads of clear stuff
im so tired have rang gp he suppose to be ringing back and wg consult in today so left message with his sec
i dont mind if this is just what changing to cellcept does for awhile but i dont want to feel like this every day :crying:
will let you know what happens later DEE X

elephant
09-08-2010, 08:16 PM
Dee, sorry you had such a rough night. I never had those symptoms when I first started. Glad you are seeing your doctors. Keep us update.

DEE
09-08-2010, 09:00 PM
gp rang back seeing me at 4,20 thinks some of symptoms side affects but wants to check chest incase of infection
He also said taking cellcept can give you flu like sympyoms !!
still waiting for wg consult to maybe he will ring after morning clinic
will post when i get back

elephant
09-08-2010, 09:56 PM
Keep an eye on that, if you start to get worse...like a fever...feeling faint... along with flu like symptoms it could be that your body does not like the cellcept.

Sangye
09-08-2010, 11:11 PM
Dee, I was on Cellcept for 2.5 yrs. In that time I had to go on and off it many times. Each time I went back on it I got a bad sore throat--extremely red, full of hard pus, pain radiating into the ear. When the throat healed, it left giant tears and holes in my tonsils. It looked like tonsilitis but never cultured as anything. An ENT even insisted a tonsillectomy was necessary or I'd suffer with chronic tonsilitis. I thought that was ridiculous. The whole thing would disappear within a week or two and if I stayed on the Cellcept it didn't return. But while it was there it was very painful and exhausting.

You may be having a similar reaction to the Cellcept. In my case I think it was a reaction to all the B cells getting wiped out so fast, but who knows? It didn't happen with rtx, which destroys all the B cells, too.

DEE
09-08-2010, 11:11 PM
wg consult just rang going to have full bloods ,stools saample , chest x ray urine sample ,inr and reduced cellcept to 500mg for two days

said we have to rle out stomach bug before we dicount cellcept :unsure:

DEE
09-08-2010, 11:25 PM
Thanks Sangye hopefully i will get some answers soon i have to ring wg consult if it gets worse and gp just up the road
was just a bit concern as to how much of my other meds i am getting in me due to spending so much time in the bathroom if you know what i mean :rolleyes1:

elephant
09-09-2010, 12:06 AM
Dee glad to hear you rang yourdoctor, sounds like they are doing a good job of checking you out...hopefully you will be out of the bathroom all day!

Sangye
09-09-2010, 12:52 AM
Dee, yes it's a big concern that you're not absorbing all your meds if you have diarrhea like that. I hope they figure it out soon. :hug1:

DEE
09-09-2010, 02:42 AM
back from gp x ray in morning plus shed load of blood test and cultures of the bathroom department
hubby has just come back from the hospital i have to get my x ray done at ten mins before gp appointment :ohmy:
good job he loves me returning again tomorrow

pberggren1
09-09-2010, 04:53 AM
Dee, I'm glad to hear that the Wegs consultantant ordered all that stuff including a cxr. I hope you are comfortable with him and he knows what he is doing.

DEE
09-09-2010, 05:05 AM
thanks Phil yes im lucky gp five mins from house rang him this morning he rang back in half an hour ,left message for wg consult he rang after his clinic
i just know things are not right :rolleyes1:
hopefully things will get sorted DEEx

elephant
09-09-2010, 07:30 AM
Good Dee, thinking of you and hoping tonight will be restful and one bathroom trip.:unsure:

DEE
09-12-2010, 12:26 AM
got the first of my blood results back INR dropped to 1.70 so they have put my warfarin up to 8mg daily
i was hopeing i was going to be better because they were talking of me maybe coming off in oct dont think it will happen now back to weekly inr test:sad:
will get main test results back monday when im going to talk to wg consult again
wiill let u know DEEx

Jack
09-12-2010, 12:52 AM
My INR goes up and down like a yo-yo even though my diet and the drugs I take don't change. I'm on only 2-3 mg of Warfarin (target INR 2-3), but I still bruise at the slightest touch.

elephant
09-12-2010, 02:55 AM
Sorry to hear about that Dee. Here is a yellow hug!:hug1::hug3:

DEE
09-12-2010, 03:20 AM
Thanks Jack and Elephant
my target is 2-3 too just abit concerned as it was that level 1.7 when i had blood clots and on 9mg and because of me having the cough again
gp said my chest sounds clear and i reminded him that it did when i had blood clots before hopeing im reading to much into situation and wait and see what monday brings
Thanks again for your support DEEx :smile1:

Sangye
09-12-2010, 04:24 AM
Dee, I don't remember if you had blood clots in your lungs. If so, given that you have Wegs also, it might mean that you need to stay on warfarin for life. My JHU hematologist told me the combo of pulmonary emboli and Wegs increases the risk of future clots to an unacceptable degree, and lifetime warfarin coverage is necessary.

Also, when my lungs were filled with clots (and I do mean filled), they sounded perfectly clear and my pulse oxygen was 100% (at high altitude, no less). I could hardly breathe and insisted on a chest CT. Boy, wasn't my doctor surprised.... The radiologist paged him to the CT room stat.

Jack
09-12-2010, 04:31 AM
I'm on Warfarin for life following my PE.

Sangye
09-12-2010, 04:38 AM
Dee, I'm also wondering about your absorption of warfarin. Unless you eat a HUGE amount of green veggies, 8mg a day is a very high amount to be needing. I eat a lot of green veggies and I only need 4mg daily. They really should be investigating why you need such a high dose.

DEE
09-12-2010, 06:46 AM
Sangye my situation was similar to yours yes ihad two clots in top lobe of my lung and multiple clots in bottom lobe
i have never been below 6mg since i started taking it
i decided to keep my diet roughly about the same have never been a fan of green veg so opted a little amount on regular basis
my chest always sounds clear !!!
and it was only when they did ct scan they found the clots before that i could not breathe properly and my oxygen levels were low
hence oxygen mask for a week and starting the warfarin
ive got my cough back .my right side hurts alittle when i cough but breathing not to bad at the moment as long as i dont lay flat
im talking to gp and wg consult monday morning when all my test are due back and will ask about the warfarin dosage due to haave INR retested on thurs pm
it seems strange that im still on a higher dose than when i left the hospital and they were saying i could be off it in six months which is actually in the beginning of october:confused1:
we will leave you in peace night DEEx

Sangye
09-12-2010, 06:52 AM
Dee, I don't like to hear that you're coughing again. That worries me. If you're still having trouble in the morning, please go to the ER and get checked out for repeat lung clots.

Did you ever consult with a hematologist? That's the one who should be making the decision about how long you stay on coumadin. Even my prior hematologists (local and Mayo) all said minimum of 5 years on warfarin with pulm emboli and Wegs. It was the JHU Chief of Hematology who said lifelong. I fought them all, but had to concede. They're right.

Jack
09-12-2010, 07:15 AM
I must say that they all took my PE very seriously - it was just before Christmas and they did not want to let me out of hospital. I was only allowed out because they arranged to visit me at home every day.

Sangye
09-12-2010, 11:48 AM
Yeah, I was not allowed to move out of the wheelchair, and then was not allowed out of bed even to go to the bathroom. I was hospitalized for a week while they got the anticoagulants going. I was so packed with clots-- no one there had seen anything like it. At least not in someone who was still alive!

DEE
09-12-2010, 03:33 PM
i did the week in bed when i first had pe and on the follow up appointment was told it took some people longer to get over than other !!!
but will take your advice on board thanks for caring DEE x

Sangye
09-12-2010, 10:33 PM
There's a difference between recovering from the clots (ie, your body reabsorbing the clots) and the risk of future clots. My clots disappeared within 6 months as expected, but the risk remains. Maybe you understood that, just wanted to make sure! :smile1:

DEE
09-13-2010, 03:10 AM
There's a difference between recovering from the clots (ie, your body reabsorbing the clots) and the risk of future clots. My clots disappeared within 6 months as expected, but the risk remains. Maybe you understood that, just wanted to make sure! :smile1:

Thanks Sangye for keeping me on my toes went out for an hour this morning as stiff as board thoght a slow gentle walk would help .shattered when i came back
Went to bed for a nap just got up 5,30 hadily slept last night :huh: will be onto gp and wg consult first thing in the morning when resuts should be back as i feel as though im just treading water again need meds sorting need eyes sorting etc dont worry have written it all down for the morning thanks again DEEx

Sangye
09-13-2010, 10:39 AM
Oh Dee, I hope you're okay. I don't like the sound of all that. I'm sure glad you're checking in with your docs tomorrow.

DEE
09-14-2010, 02:20 AM
ok bloods came back fine for me . spoke to wg consult this morning . still having problem with diarrhoea still waiting results from sample said it can take up to a week to come back !!
told me to stop cellcept for two to three days because not sure if diarrhoea caused by bug or warfarin or cellcept
going to see him if things dont get better soon i am due to go to the clinic next wednesday but he said that might be to long
i have no temprature and blood pressure ok but still have pain in joints :confused1: although alot colder and damp here today and i noticed last year this happened
cough not so bad as i have been using inhaler more often
Sangye what did you take after they stopped cellcept for you ?

Sangye
09-14-2010, 02:29 AM
I had to stop Cellcept last year when the flare got out of control. I did ctx (which failed) and then rtx.

It sounds like your diarrhea is from the cellcept, since you've been on warfarin for awhile without problems.

elephant
09-14-2010, 02:37 AM
Dee, that is too bad. Hope everything gets sorted soon for you. :hug2:

DEE
09-14-2010, 03:00 AM
feel like a soggy lettuce leaf:rolleyes1: just have to play the wait and see game again :crying:DEEx

elephant
09-14-2010, 03:17 AM
Awe that doesn't sound good Dee.

Sangye
09-14-2010, 03:56 AM
I hope you feel better, Dee. I've been in that same bag of lettuce for a few weeks now.... Totally sucks to be soggy lettuce. :cool1:

Lightwarrior
09-14-2010, 05:10 AM
feel like a soggy lettuce leaf:rolleyes1: just have to play the wait and see game again :crying:DEEx

Me too Dee, I see Sangye feels that way too. We need a giant crisper, so that we put our soggy leaf selves into it and come out crisp, cool and full of energy.

DEE
09-14-2010, 06:25 AM
slightly crispy will good lets not be greedy even go without the dressing on it:flapper: take care of yourselves tomorrows another day :thumbsup: DEEx

pberggren1
09-14-2010, 08:21 AM
I'm a spinach person myself.

germaine
09-14-2010, 02:48 PM
Oooohhh!, Not too reassuring, I get to join the cataract surgery club on November 16th. My Opthamologist has a really good reputation, to I will trust all will be well until I have a problem. Hope my change of medication doesn't affect anything.

DEE
09-14-2010, 07:35 PM
soggy lettuce awake :wink1:
still waiting for results but feeling alittle better this morning
hope everyone out there doing ok this morning too

elephant
09-14-2010, 07:42 PM
Glad to hear you feeling a little better. Did you have less bathroom trips? :flapper:

Fran
09-14-2010, 07:52 PM
Hi Dee - so sorry you are having such a rough time - really hope you will pick up soon http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png

Fran
09-14-2010, 07:54 PM
Hi Elephant - Will be thinking of you tomorrow and sincerely hope all goes well:thumbsup:

DEE
09-14-2010, 08:03 PM
Glad to hear you feeling a little better. Did you have less bathroom trips? :flapper:
yes elephant so now think it is the cellcept have to wait for bathroom results before wg consult will decide whats next:rolleyes1:

elephant
09-14-2010, 08:10 PM
That is really too bad that cellcept is giving you so much trouble. I really like cellcept. Darn, hope they find the right medicine for you.

elephant
09-14-2010, 08:12 PM
Fran, I am hoping things go well too...I'm sure they will. They will be giving me some la, la , la....stuff to keep me calm. Let you know tomorrow how it went. Thanks:ohmy::biggrin1::w00t:

DEE
09-14-2010, 09:12 PM
just had a call from gp office bathroom sample ok
so spoke to wg consult sec to let him know and to find out what next
he is in the hosp again wed pm to ring back if i need him before them
question have got croaky throat never had before ?

elephant
09-15-2010, 01:38 AM
Dee are you short of breath? Coughing?

DEE
09-15-2010, 03:25 AM
hi elephant
no its just an annoying cough usually worse in a morning and last thing at night
my inhaler helps abit will talk to consult about it dont worry TAKE CARE OF YOU :hug1:

DEE
09-16-2010, 01:54 AM
well here goes talked to wg consult no more cellcept going onto imuran next wednesday
giving body a rest and ive also got a cold from hubby or son :rolleyes1:

he said not many people react to cellcept i did remind him it was me he was talking about
if things can go wrong they always seem to go my way
he also said it should not cause any problem with me getting cataract
sorted hopefully so fingers crossed bring it on :mellow:

Sangye
09-16-2010, 01:58 AM
Well, that's what we expected.... I'm sorry Cellcept didn't work for you, Dee. I hope imuran works great and you feel better soon. Get some rest. :hug2:

elephant
09-16-2010, 02:06 AM
Dee glad you taking soemthing else, Hope Imruan works for you. The cataract surgery went well, just blurry.

jola57
09-17-2010, 07:48 PM
I hope yeour eyes improve soon elephant.
Dee, I have never been offerec anything other than cytox and mtx. Good luck with Imuran,

elephant
09-17-2010, 08:27 PM
Thanks Jolanta, my left eye has improved, I am having the right eye done in three weeks.

DEE
09-17-2010, 08:48 PM
Elephant you will have had both your eyes done just about the time i go for my first appointment for mine
cant imagin what our post will be like when we both can see what we are doing :rolleyes1::tongue1:

DEE
09-17-2010, 08:51 PM
Jolanta thanks will know more on wednesday have already tried mxt didnt work
wg consult said not many peope react against cellcept but it happens to me always one step forward and several back

elephant
09-17-2010, 09:46 PM
I really need to get some reading glasses. I have imbalance going on with the eye's one good eye...one really bad eye. Dee soon enough you will be done with the square dance and move straight forward!

DEE
09-22-2010, 11:37 PM
ok bacck home again
starting 100gm Imuran today to increase to 150gm in three weeks
tappering preds from 20mg to 17.25mg
asked about having eye op on these meds he said it would be ok and would speak to consult before op was done
croaky throat wait and see if its meds causing it ,if not will contact ENT.within the week
bloods looking better but going to have done every other week
so fingers crossed , things got to be ok wg consult going to a conference in turkey soon :ohmy: but said sec can contact by e mail if anything needs sorting
so all in all a good day :thumbsup:

Sangye
09-23-2010, 12:03 AM
I hope the imuran works great for you, Dee. :smile1:

DEE
09-23-2010, 12:20 AM
thanks Sangye
can but try ! he said he had spoke to someone about failing on cellcept not many people do ,so i told him about lisamaria who has the opposite problem
he said the goes to cionfirm how individual we are
he said he got patient that have been on Imuran for tens of years with no prob but the said to my friend but he wont say this to me ,opposite
as so far have always gone and done the opposite
so glad to be tappering preds , he said we would be doing this very slowly

elephant
09-23-2010, 01:53 AM
Wish you the best Dee, and hoping the Imuran works for you. Hope the frog leaves you soon in the middle of the night.

maryann
09-23-2010, 06:19 AM
I was recently diagnosed with WG last may and went on treatment or cyclophosphomide and prednisone. Ended up tapering down on both but flared up again last week. How they found my diagnosis was it was affecting my kidney function. Im being treated by a nephrologist and was wondering if i should ask about a rheumatiologist? If anyone else has been affected this way what kind of meds are they on and have you had many flare ups? Are you able to work everyday? My job is very physically demanding and find myself exhausted everyday. With this flare up it really scared me and was wondering if any others had flare ups and they do okay after them, when the start to treat it more aggressive. Any information would be helpful as i have a DR appointment tomorrow and was wondering what questions to ask. Thanks again and good luck to all

Sangye
09-23-2010, 07:22 AM
Hi Maryann, welcome to the group. Yes, you definitely need a rheumatologist overseeing your care. Very rarely other specialists can provide proper care as the main doctor. Here's info for you, even though you aren't newly diagnosed. http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

The way Wegs and flares affects us is very different. I haven't been able to return to work for over 4 years.

elephant
09-23-2010, 07:24 AM
I agree with Sangye. Maryann, feel free to ask us any questions...hope all goes well tomorrow!

Jack
09-23-2010, 07:40 AM
Hi Maryann,
The specialist for Wegener's is usually a Rhumatologist, but there are sometimes specialists from other areas. In my own case I had renal failure and was moved from the care of Rhumatology to Nephrology, but the two departments co-operated in vasculitis research so I had the best of both worlds.

Flares during the early stages of treatment are very common indeed and do not act as a predictor to how well you are going to do long term. It took me 4 years to reach remission, but then had 20 years without a Wegener's flare and was able to taper off onto less toxic treatment. Many manage to reach the stage where they can go without any drugs at all although there is still no permanent cure as such.

A common drug regimen is Cyclophosphamide and Prednisolone to start with until some sort of remission is obtained. This can then be changed to something less toxic such as Azathioprine and Pred or Cellcept and Pred. There are various alternatives to these depending on how well you respond, but Cyclophosphamide should not be continued for more than 6 months (12 month maximum) and you MUST drink lots of water with it.

Most people also take a cocktail of other stuff mainly to combat side effects. Let us know what you are on.

Fran
10-11-2010, 02:43 AM
Hello Dee - How are things with you - haven't see you update lately - hope that means you are doing okhttp://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png

DEE
10-11-2010, 06:12 AM
Hello Dee - How are things with you - haven't see you update lately - hope that means you are doing okhttp://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png
hi Fran
still taking Imuran doing better than when on Cellcept just not sure about symptoms im having just now
as i only been on drug for three weeks . Having full bloods done monday pm
had INR done thurs and got results fri now on 9mg warfarin more than when i left hospital !!
hot sweats and not sleeping back to dont know if this is because lowered pred 2,5 mg too
But main issue at the moment is getting my eyes sorted went shopping with hubby saturday ,when we got to the till he asked why i bought three bags off potatoes , i had not two were potatoe the other was suppose to be red onions :rolleyes1:
the reason keeping to myself is ive taken the last three years on the chin stood up and kept going but not finding it easy at the moment maybe just a blip my time to feel sorry for myself :sad:
dont worry will bounce back sooner or later
hope your taking care of yourself :hug3:DEE x

elephant
10-11-2010, 09:51 AM
Dee, hope your eye get taken care of soon. It went really smooth with me getting those cataracts out. LOL about the potato and onion mix up!

Sangye
10-11-2010, 10:48 AM
Aww Dee, I've been having a rough time lately, too. I know how it is to just feel beaten down by this mess. Please take care of yourself.

Regarding the warfarin, something is wrong. You'd have to be drinking many glasses of green juice every day to need 9mg warfarin. I suggest you switch to brand name (coumadin). This is one drug where generic is not an acceptable trade-off.

elephant
10-11-2010, 11:35 AM
Dee, I agree with Sangye.

DEE
10-11-2010, 03:29 PM
thanks guys
going for bloods done today will ask about the warfarin as i dont understand why ?
kept my diet the same i dont eat alot of things with high vit k anyway :confused1:

Fran
10-11-2010, 09:26 PM
Hi - Just to let you know I'm thinking of you and hoping you will feel much better soon. http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png

Sangye
10-12-2010, 01:37 AM
Dee, before you go, print out this article for them. It justifies why you need brand name Coumadin. Johns Hopkins: Prescription Drugs on generic drugs (http://www.johnshopkinshealthalerts.com/alerts/prescription_drugs/JohnsHopkinsPrescriptionDrugsHealthAlert_3695-1.html?ET=johnshopkins_blog:e42152:1128208a:&st=email&st=email&s=EKH_100928_013)

I think they'd have a hard time arguing with something published by Johns Hopkins.

Hammy8241
10-12-2010, 02:34 AM
kept my diet the same i dont eat alot of things with high vit k anyway :confused1:[/QUOTE]

Cadbury.co.uk - Bassett's Jelly Babies - 215g Guide (http://nutrition.cadbury.co.uk/epages/Store.storefront/?ObjectPath=/Shops/NutriApp/Products/11001006)

Nope:thumbsup:

DEE
10-12-2010, 03:27 AM
Thanks Sangye will print off information , had bloods taken this pm will talk to gp when he rings about results .
Hammy not had any jelly babies for awhile as son has gone back to university and he the one that usually buy s them:biggrin1:
having INR done again thurs morning beginning to feel like a pin cushion again:ohmy:
thanks everyone
ps had a mega preds day yesterday baked for whole of uk
hubby will be taking for packed lunch forever:rolleyes1:

elephant
10-12-2010, 07:18 AM
So glad you cooked, hope you enjoyed your food. Thanks for the update Dee.

DEE
10-12-2010, 03:51 PM
trying to be good :rolleyes1: had a sleep catch upday yesterday ! thought i would not sleep last night but i did:thumbsup:
going to have a slow steady day today too , think i need to recharge the battery

DEE
10-23-2010, 05:38 PM
finally found out why battery needed charging . now have a few more of wg symptoms back !!!!!!!!
went to wg consult thurs , he thinks imuran not holding things , blood results show raised inflamation markers and have blood and protein in urine again:ohmy:
he was presenting my case of wg to the doctors at the hospital fri morn and had invited all my consultants which he was having a meeting with afterwards
we have agreed to up imuran until he gets further tests back from the labs
i can still have asssessment and pre op done for cataract but just to see dentist about what needs doing just now
options we talked about
giving Imuran a little longer to work
look to using rhixamab (sp) injection
or to remove immune system completely and start again !
information over load setteling in
all adds upto two hospital ,two gp and two bloods appoints and a dentist appointment next week :rolleyes1:

elephant
10-23-2010, 11:23 PM
Dee, I am here for you. Hope the increased Imuran will work! Take good care of yourself!

Sangye
10-24-2010, 12:25 AM
Dee, I was wondering if they were considering rtx. I'm glad they're increasing the imuran and talking rtx if it doesn't work.

One suggestion: Write down the symptoms you started having the last couple weeks, when you weren't sure if it was Wegs or something else. Those can be good clues of a Wegs flare in the future. Write them down now while it's fresh in your mind. I always think I'll remember later, but with the constant flood of symptoms and problems, they get lost in the heap. :wink1:

DEE
10-24-2010, 02:14 AM
thanks Sangye
i have been doing that this last week or more , mainly tired and achy joints etc wet lettuce feeling ,mind willing body not ,
did not discuss alternative in detail as we had talked for over an hour .+
but it msy be my one brain cell not fuctioning but cant remember anyone mentioning rxt by injection on the forum:unsure: how often would it be done do u think
they did say it could not be done at their unit that he would have to talk to rhuemy about it
anyway going to focus on eyes first :rolleyes1:
one day at a time

Sangye
10-24-2010, 02:38 AM
They don't give rtx by injection. They give it by infusion-- an IV. Easy to confuse the words! It's done at an infusion clinic, not in a doctor's office. That's usually at a cancer center or an infusion clinic at the hospital.

DEE
10-24-2010, 03:31 AM
think i remember someone mention it at renal ward when i had my kidney biopsy done , there was a man having his first infusion and he was there most off the day
will have to see how things go
thanks for getting me out of brain fog Sangye DEEx

DEE
03-27-2011, 05:32 AM
Ok I have been for my wg check up with my consult ; First of all happy with Imuran but not happy with tappering of preds :glare: he is worried for me because of how long ive been on them
So going to give in another go on 12mg at the moment going to try 1mg drop at a time trying to get to 7.5 mg
Having major bloods done again Monday and x ray of hands /wrists and knees re my OA
also asked to be a patient for doctors final exams !! in the next few weeks , of course said yes ,
as wg consult says a great way to educate new docs how to dxt wg :thumbup:
Also had first meeting with special care dentist and a special care dental consultant and yet again more students !!
They were very good , in so much as the amount of time they spent with hubby and I and the information they give use
They were meeting with anethertis sp in the afternoon and then they are going to write a care plan for myself ,wg consultant which we will both have to agree to regards extra anti b
then they will speak to wg consultant aswell and we will have another meeting in three weeks time Hope that makes sense
felt like information overload but getting my head round it now
Marta took outline to show him , he was well impressed :thumbsup: and also said he would help me if needed it or if we wanted any input from consultant point of view would be willing to help
ps new eyes still working well espeically now i have got my reading glasses :tongue1: DEE x

Sangye
03-27-2011, 05:57 AM
Dee, how fast are you tapering the pred?

DEE
03-27-2011, 06:32 AM
Hi Sangye we are thinking i try 1mg at a time with the option of putting up for a short periods if i getting any problems and also have access to wg daily if needed
I was also suprised because specialst dentist consultant gave me her mobile number too

Sangye
03-27-2011, 08:33 AM
I meant how quickly are you tapering the 1mg each time? For example if you drop from 12 mg to 11mg, how long before you drop to 10mg?

DEE
03-27-2011, 06:54 PM
Sorry Sangye misunderstood
Im going to 11mg tomorrow see how i go if ok 10mg next week then maybe 10 /9mg .
if thats not ok will have a go at dropping 1/2 mg at a time because my gp is less than five mins away i willing to give it another try
seeing him tomorrow evening
Last time it was the joint pain that bothered me ,plus mood swings worse than i have ever experianced
will keep in touch may need your support to work through this one :unsure:

Sangye
03-28-2011, 01:51 AM
Whoa, dropping 1mg a week? That's normally okay but sounds way too fast for someone who's been on pred for awhile and has had trouble tapering. (That's based on what I've been through and what Dr Seo has told me.) Did your doc say you can go slower if you want?

DEE
03-28-2011, 02:33 AM
Just going to take it day by day said to ring him if i have problems , its because ive been on them so long he would prefer me on 8mg/7.25mg
Dont worry i have taken your advice on board and will be careful Thanks Sangye