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View Full Version : How many take DS Bactrim daily?



elephant
07-28-2010, 09:43 AM
I was wondering how many of you take Bactrim DS daily? Do you take one DS tablet daily or two tablets? How long have you been taking Bactrim daily?
I am thinking that I might have to resort to that. thanks

misskay
07-28-2010, 10:05 AM
I take 1 Bactrim DS every morning. Have been on it at this dose for 4 weeks, and was on 2 a day prior to that. Was hoping it would help with the sinus issues... but so far no luck.

elephant
07-28-2010, 10:41 AM
Thanks for the input Misskay. What kind of sinus issues do you have, if you don't mind me asking.

julia
07-28-2010, 11:21 AM
I was wondering how many of you take Bactrim DS daily? Do you take one DS tablet daily or two tablets? How long have you been taking Bactrim daily?
I am thinking that I might have to resort to that. thanks

I used to take it MWF 1 tablet. If I remeber correctly they took me off when I started Imuran. on 2nd thought I think it was when I started coumiden.

Lightwarrior
07-28-2010, 12:30 PM
I take Bactrim DS , one tablet once a day on MWF 800/160 strength

DEE
07-28-2010, 02:59 PM
i took two 800/160 in the beginning and now take ever other day
ive been doing this for over a year and have been told it will be one if the tabets i wil have to take for a while yet DEEx

pberggren1
07-28-2010, 03:17 PM
I take the double strength twice a day. But it is because I have a rare lung infection right now called Mycobacterium Abscessus.

Jack
07-28-2010, 05:20 PM
I take one tab every day and have done for many, many years. It stopped me from getting various random infections including sinus and lung, but I believe it does more than that and has other beneficial effects when Wegener's is involved.

misskay
07-28-2010, 09:37 PM
elephant, I have severe sinus pressure, the pain is so bad that some days I can't stand to have my glasses on. The bridge of my nose hurts too bad. Also an intense pain like someone is sticking a needle up my nose (like before you sneeze by multiplied x 100), terrible congestion. I go through a whole box of tissues every day. Bloody discharge (clots, grey funky looking hunks of 'something') and random bloody noses several times a day. Plus the crusting...

Funny thing, when I was in the hospital, and we were trying to figure out what was going on they did a CT of the sinuses... they said it didn't show anything but I'm becoming more and more convinced we have major sinus involvemnt. Going to re-visit this with te docs and see if we can take another look.

Jack
07-28-2010, 10:22 PM
As far as I am concerned, if you are still having lots of sinus trouble, your Wegener's is not under control and need more or different medication to subdue it.

misskay
07-28-2010, 10:28 PM
we're trying to get it under control. I am on the DS Bactrim, 60 mg Pred daily, 100mg Cytoxan, Calcium with Vit D, Lunesta, Atenolol, Zyrtec, Saline Spray and Flonase. Last chest x-ray showed the lungs look a little better. I have only been on the Cytoxan for 2 weeks now. Hopefully things will start to improve (please, please, please) soon.

Palmyra
07-28-2010, 11:03 PM
I was wondering how many of you take Bactrim DS daily? Do you take one DS tablet daily or two tablets? How long have you been taking Bactrim daily?
I am thinking that I might have to resort to that. thanks

"I take Bactrim DS , one tablet once a day on MWF 800/160 strength" ~lightwarrior

My daughter has taken the same dose/schedule since her diagnosis 4 yrs ago (originally Rx's by Ulrich Specks, one of the VF specialists)

Palmyra
07-28-2010, 11:15 PM
Hey msskay,
After a very recent visit to Mayo for sinus/tonsil/lung issues, my daughter was Rx'd to use a netipot contraption twice daily to use 'just as one would brush one's teeth, twice daily'. It employs a powder that is mixed with water to create a neutral saline solution. Mayo was handing them out like candy. She also takes Bactim to prevent a particularly nasty type of bacterial pneumonia.

From the lectures I heard at the last VF symposium, prophylactic use of Bactrim is pretty standard for those with lung involvement.

Good luck to you!

elephant
07-28-2010, 11:21 PM
Misskay, give it some time. You have been on cytoxan for two weeks so give a couple more weeks. The nasal spray did nothing for me....I think it really made my sinuses worse! I tried them all too.
Did the ENT do a culture in your nose to rule out infection? Hope it goes away soon. Keep us posted.

Sangye
07-29-2010, 12:02 AM
The way the Bactrim issue has been explained to me:
Bactrim is given to those on ctx because ctx makes you more prone to a type of pneumonia that affects immune-compromised. It's easy to prevent, but difficult to treat if you get it. For this purpose, it's given in a prophylactic dose: DS 3 days a week.

For those with sinus or other upper respiratory involvement, Bactrim seems to help control the Wegs in addition to decreasing the number of sinus infections, etc....

With lung involvement or other involvement, Bactrim doesn't seem to help the Wegs at all. (That's the category I'm in.)

Sangye
07-29-2010, 12:05 AM
Misskay, I'm sorry you're suffering like that. I don't have that kind of sinus and nasal involvement and can't imagine how you cope with it!

I'm wondering why your ctx dose is still so low. It's based on weight. Most people are on 150mg. Ctx takes about a month to kick in at all, which means you can look forward to feeling better very soon. But ask about the ctx dose. Your doc might be under-dosing you and that won't control the Wegs.

JanW
07-29-2010, 12:43 AM
Never been on Bactrim but perhaps that's because of what Sangye describes above -- my sinus involvement currentlly is minimal to non-existent (although it was present briefly several months before I was dx), and I'm not on ctx.

I was aware it was a prophylatic, but didn't realize that it also helped with WG.

misskay
07-29-2010, 12:56 AM
sangye, doc started me out on 50mg a day for the first 2 weeks, we just now (today) went to 100mg a day. His goal is to get me to 150mg a day but he's trying to keep it from making me too sick so we're increasing it every 2 weeks.

Also, he told me the Bactrim was to keep me from getting PCP, Polycystic Pneumonia I think he said... mine started out with lung involvement (Cavity Pneumonia that almost killed me).

Sangye
07-29-2010, 04:03 AM
That is extremely slow to build up ctx, not typical to take that long. It won't begin to control the disease until 4 weeks after you reach therapeutic dose--150mg. Meanwhile, a lot of damage can be done. Please look into getting a Wegs specialist on your case, Misskay.

(The pneumonia is called Pneumocystis carinii.)

pberggren1
07-29-2010, 06:04 AM
That is strange to slowly increase the dose of ctx. I have been on it 4 times now and each time I was started at the highest dose.

JanW
07-29-2010, 06:09 AM
All I ever heard on the immunosuppressants was half dose (to see if it's tolerated by bloodwork) and then full dose of....whatever. My rheumys sense was to the extent that you had physically noticeable side effects he would deal with them through other means if possible -- the main thing he wanted to make sure of is that the medication (in my case mtx) wasn't wrecking my liver.

Sangye
07-29-2010, 06:29 AM
Jan, yes, it's just that they are waiting much longer than normal between dose increases. If you need ctx, it means you have severe disease and treating it with a sub-therapeutic dose is ineffective. The delay is dangerous.

Phil, slowly increasing the ctx dose when beginning treatment is normal, just not that slow.

Last summer when my lungs were hemorrhaging, Dr Seo said he was more concerned with how I'd be in 6 weeks if we didn't start ctx immediately, than he was about how I was that particular day. He was looking down the road, considering how long it takes ctx to start working, and that it takes a week or so just to get up to the therapeutic dose.

pberggren1
07-29-2010, 08:08 AM
Sangye, I didn't know that the ctx should be increased like that.

Jack
07-29-2010, 06:19 PM
As far as I'm aware, the only reason to increase the ctx dose slowly is so that any adverse side effects can be detected and acted upon before major damage is done. It is not at all unusual for the dose to start extremely high and then taper off. This was the treatment I received because I was in such bad shape, but I did have to remain in hospital with careful monitoring for the first couple of months.

drz
07-30-2010, 02:05 PM
That is strange to slowly increase the dose of ctx. I have been on it 4 times now and each time I was started at the highest dose.

Did you have trouble with WBC going too low? I started at 100 mg oral Cytoxan and then went slowly up to 150 and then they had to discontinue it for a week due to low WBC. Now I am at 75 on odd days and 100 mg on even days and my rheumatolgist seems happy with that since my WBC is staying close to normal limits and lab show signs of WG decreasing in symtoms.

pberggren1
07-30-2010, 02:33 PM
I don't think my WBC ever went below 4 or 5 the 4 times I was on ctx. Glad to hear you are improving.

God Bless,
Phil

Sangye
07-30-2010, 10:34 PM
The usual is to start at 50mg for a few days, then increase by 50 mg every few days.

drz, 75 or 100mg is such a low dose. I hope it's getting control of the Wegs and not just holding it at bay. Do you feel a lot better? (Might be hard to say, since the drugs can make you feel so lousy)

drz
07-31-2010, 10:18 AM
I don't think my WBC ever went below 4 or 5 the 4 times I was on ctx. Glad to hear you are improving.

God Bless,
Phil

Mine (WBC)only goes above 5 when i have an infection, at least that is what I recall now but pred memory??

drz
07-31-2010, 10:33 AM
The usual is to start at 50mg for a few days, then increase by 50 mg every few days.

drz, 75 or 100mg is such a low dose. I hope it's getting control of the Wegs and not just holding it at bay. Do you feel a lot better? (Might be hard to say, since the drugs can make you feel so lousy)

I feel OK most of the time except when HGB gets low or I get bladder infections. I hope new treatment plan will get rid of bladder infections which keeps interfering with Cytoxan dosage. Progress has been slow but rheumatolgist believes the WG is finally starting to respond to treatment. That is why he is starting to reduce the prednisone. If it doesn't seem to work out well he may consider trying Rituxan again. (probably if I end up in in-patient again in next couple months)

My initial treatment after diagnosis when i had to be intubated for bleeding in lungs was to start with Rituxan IV which I had twice i remember. When they moved me to a rehab hospital to get re-conditioned they then started oral Cytoxan because of concern about side effects and hope the IV Rituxan benefits would last till cytoxan reached more therapeutic level. I know for cancer they estimate Rituxan benefits to last several months or longer. I don't know how long it helps us WG patients.

Sangye
07-31-2010, 10:46 AM
Did they only do 2 rtx infusions? That wouldn't be enough to induce remission with severe disease. The usual is 4 infusions--one a week for 4 weeks.

drz
07-31-2010, 11:25 AM
Did they only do 2 rtx infusions? That wouldn't be enough to induce remission with severe disease. The usual is 4 infusions--one a week for 4 weeks.

I didn't get remission and still don't have it but am getting closer slowly. They gave up on Rituxan because it wasn't working fast enough for me.

Sangye
07-31-2010, 11:39 AM
I was just thinking that it shouldn't put rtx in the "didn't work" category. It's always good to know there are other drugs that can be used if ctx doesn't work or if you can't take it anymore.

Doug
07-31-2010, 11:42 PM
I take Bactrim DS , one tablet once a day on MWF 800/160 strength

Me, too. I've been on this for five years, I believe. For awhile I was on this and CellCept, then my doctor told me the Bactrim alone was found to maintain remission in many instances. Since it's the cheapest medication I take, I was very glad indeed. Ha! For awhile, I was on Procrit (strimulates red blood cell production- I had lots of white and red blood cell count issues in the early stages of my treatment), and it was a $500 a week shot that my insurance (whew!) paid for. Reluctantly, no doubt!

Sangye
08-01-2010, 12:22 AM
$500 a week? Psh... pocket change.

Lovenox (injectable blood thinner): $7,000 a month ($115 per shot). I was on it for 2.5 years.

One round of rtx: $40,000 ($10,000 per IV). I've had 2 rounds of that.

Cellcept: $900 per month. I was on it for 2 years.

When friends say I'm worth my weight in gold, they're probably not far off. :D

elephant
08-01-2010, 02:11 AM
Thanks Doug for the input, I thought about asking my WG specialist if I can just be on bactrim and get off the cellcept. I guess I will call her next week.
Sangye your worth more than gold!

pberggren1
08-01-2010, 08:24 AM
$500 a week? Psh... pocket change.

Lovenox (injectable blood thinner): $7,000 a month ($115 per shot). I was on it for 2.5 years.

One round of rtx: $40,000 ($10,000 per IV). I've had 2 rounds of that.

Cellcept: $900 per month. I was on it for 2 years.

When friends say I'm worth my weight in gold, they're probably not far off. :D

Sangye, there is no way you are worth your weight in gold. Gold can't even compete with you!

Sangye
08-01-2010, 11:03 AM
The more Weggies get on rtx, the more valuable we all become! :D

pberggren1
08-01-2010, 11:06 AM
The more Weggies get on rtx, the more valuable we all become! :D

There's that classic homour again!:):);)

drz
08-01-2010, 08:07 PM
$500 a week? Psh... pocket change.

Lovenox (injectable blood thinner): $7,000 a month ($115 per shot). I was on it for 2.5 years.

One round of rtx: $40,000 ($10,000 per IV). I've had 2 rounds of that.

Cellcept: $900 per month. I was on it for 2 years.

When friends say I'm worth my weight in gold, they're probably not far off. :D

How many people look at their insurance claims and payment? I am just starting to get claims for hospital care since initial diagnosis and first treatment a few months ago and find them shocking. It sure doesn't take long to run up a two million dollar tab. I remember back when my insurance had a million dollar life time cap and we figured we could never spend that much.

Jack
08-01-2010, 08:57 PM
I always hesitate to contribute to insurance related posts because I am so lucky to be living in the UK and not having to worry about it. I'm very aware of the strain some members are under with their insurance problems and finance in general.

Health care reform in the USA seems to have fallen out of the news over here. What is the current situation? Does it look like things will be improving for those without insurance?

elephant
08-01-2010, 09:30 PM
Don't know Jack, it seems to be a mystery? That is what many of us here wonder...whats going on? Too many people against the reform? Too many fears? Well as the economy is not getting better...if things get worse those people who were against the reform lose their jobs ....they will be the one's screaming to have it!

Carol
08-01-2010, 09:51 PM
I take bactrim DS three times a week. I've been on that for 2 1/2 years now. I seem to tolerate it well which surprises me. Carol

Deanne Hull
08-01-2010, 10:32 PM
HI i am taking a Prophylaxis medication called trimethoprim to stop any infections which seems to be working.

Jack
08-01-2010, 11:07 PM
Trimethoprim is used in the make up of Bactrim (Co-Trimoxazole) which is a combination antibiotic.

Doug
08-01-2010, 11:26 PM
I always hesitate to contribute to insurance related posts because I am so lucky to be living in the UK and not having to worry about it. I'm very aware of the strain some members are under with their insurance problems and finance in general.

Health care reform in the USA seems to have fallen out of the news over here. What is the current situation? Does it look like things will be improving for those without insurance?

In a few words, a watered-down version made it through a Congress that itself has the best healthcare plan in America (for life, paid for by taxpayers, once you join the "club"!)! Lesson here? Run for Congress!

It was massaged so much that I can't tell you what actually made it through and if I am mad or happy with my Congressman and two Senators. I think "mad", yet...? Anyway, I found this website that may answer specifically those questions we have that affect us directly in the USA.

Jack, you may look in it, too, because we like you over here! Ha!

http://www.healthreform.gov/ This website (US Government-sponsored one) gets into the detail of the reform law.

Sangye
08-02-2010, 12:12 AM
Yes, like Doug said, it was totally watered down. The best chance a Weggie has of getting affordable private insurance is to run for Congress.

One of the big problems: If you have a pre-existing condition, even though you can now get insurance (before they could deny you), the rates are exorbitant. The system that is supposed to help contain the cost doesn't go into effect until 2014. The only people who qualify for a temporary high-risk pool are those who have been uninsured for 6 months.

Someone like me who has had continual coverage--and who cannot go 6 months without it-- has no way to afford insurance for the next 4 years. I'm on Medicare and could not transition to an affordable private policy. I don't see the logic of the 6-month rule at all.

Kunka123
08-02-2010, 05:09 AM
Been Taking Bactrim DS daily since i was diagnosed in '02. Bad thing is that i drink alcohol so I think it may not be working at full strength.

elephant
08-02-2010, 05:14 AM
Glad it is working for you. How long will you stay on it?

JanW
08-02-2010, 11:50 AM
another note from the conference: bactrim is not indicated in patients in remission from WG. It is particularly indicated in every patient taking ctx. On other immunos, it seems to be something docs decide case by case.

High dose bactrim is not proven to prevent recurrance of vasculitis. It may be studied again, but studies don't prove that it has bearing on this disease.

elephant
08-02-2010, 11:53 AM
JanW I was wondering if I need to be on it daily. My sinuses like it. Thanks again and again.

pberggren1
08-02-2010, 12:51 PM
another note from the conference: bactrim is not indicated in patients in remission from WG. It is particularly indicated in every patient taking ctx. On other immunos, it seems to be something docs decide case by case.

High dose bactrim is not proven to prevent recurrance of vasculitis. It may be studied again, but studies don't prove that it has bearing on this disease.

That is interesting JanW. My Wegs doc has upped my Bactrim because of M. Abscessus in my lungs but the Ifectious Disease doc, I think, was wondering about why I was on such a high dose.

wgrebel
08-05-2010, 01:46 AM
I used to take Bactrim on MWF, but my specialist changed it to seven days a week when I was discharged from the HP July 21. My white count was .8 when I entered the HP & it was back to normal at discharge 8 days later on July 21. I am on it seven days a week now as a precaution until my immune system gets stronger.

Brooke
08-05-2010, 06:06 AM
I take a regular strength bactrim every day. I can't even remember when I started that, I believe the end of last year.
I'm glad ins covered rituxan for me, I received a copy of the statement and it was $ 65,000.00

pberggren1
08-05-2010, 07:21 AM
65 grand, Yikes!

wgrebel, what does MWF mean?

elephant
08-05-2010, 08:19 AM
MWF- monday, wednesday and friday.
That is alot of money, but it will save lives!

DEE
08-06-2010, 06:55 AM
Phil i take mine MWFS DEEx :)

flana
08-24-2010, 09:51 AM
Hi, I take Bactrim DS one every other day to protect myself form contracting PCP etc. that all imuno- suppressed are prone to. I too used to get the nasal discharge/chunks you are talking about. I have had this for about 4 months after I was Dx'd. I used to do Sinus Rinse (Niel Med Sinus rinse - not the neti pot kind but the one with the botle, you get it at costco for ~15$ with two bottles and 250 pouches of solution powder) 3 - 4 times daily or more as needed. And to keep things moist I would use "Ayr" gel - water based. After about a year and a half I am now down to rinse once a day only, but still use the "Ayr" many times a day.

I have started seeing crusting again (been a month or so) and my last ANCA came positive.

Sangye
08-24-2010, 10:00 AM
Raj, what is your doctor doing about your increasing symptoms? It's always best to treat a flare at the earliest. You can avoid the stronger drugs and higher doses.

flana
08-24-2010, 10:14 AM
Nothing yet. My primary rheumo does not even know of it yet. The secondary rhemo is supposed to get back with me. He wanted a summarized list of my past results. So lets see what he comes back with. Will go to my primary rheumo as soon as I hear from my secondary.

BTW my pri-rheumo was going to introduce Imuran this Sunday. Not sure how this changes the ball game with the new changes in the labs.

Hope you are doing well!!

elephant
08-24-2010, 11:36 AM
Raj, have you had any other symptoms beside crusting. So the only medicine your taking now is Bactrim.

Terri
08-24-2010, 01:12 PM
Hi all,
I've been on bactrim MWF since aug.07-may2010 when my doc wanted me to go off it. With in 3 weeks I started to run low grade fevers so by the middle of July he put me back on and after taking my second day pill, I have not had any more fevers.

flana
08-24-2010, 02:05 PM
Well on July 5th I did bleed profusely, but I was OK after that (besides the crusting of course). summarized ANCA below…

Date ANCA Titer Myeloperoxidase AB Protinase-3 AB
(< 1:20 titer) (< 9.0EIA Units) (<3.5 EIA units)
8/16/10 +ve 1:32 - High
12/11/09 -ve
8/14/09 +ve 1:80 - High 3.0 3.2 EIA
6/11/09 +ve 1:80 - High <1.2 - Normal 3.9 Units – High

I am currently taking the following meds - have been since a April of last year with only Prednisone being actively tapered down:
1. Cytoxan – 133mg
2. Prednisone – 5mg
3. Fosamax – 70mg
4. Omeprazole – 40mg
5. Bactrim – 1 every other day
6. Vitamin D3 2000 I.U.
7. Calcium – 1200mg
8. Vitamin supplement – One A Day Mens.

I have begun to see crusting since a few months, minor trouble breathing in the nights, however I feel OK overall…

Last lung CxR was OK (don’t have the results on me yet), patch is still there, but resolving still… Ear is as best as it can get, says ENT.

elephant
08-24-2010, 08:30 PM
You have been on cytoxan since april of 2009? If so that is a long time to be on cytoxan. Are you seeing a Weg specialist?

Jack
08-24-2010, 08:50 PM
As elephant says - you should only take cytoxan for 6 months maximum unless there are very good reasons to do otherwise. The risks start becoming too high after that and are with you for life. Also, you need to keep some allowance in reserve to cover you for any relapse you may have in the future.

DEE
08-24-2010, 09:22 PM
ive been taking cytoxan since may 2009 thats why im desprate to come off they were using it because the only thing that was keeping wg at bay DEE X

Jack
08-24-2010, 09:40 PM
There seem to be a number of people who have to keep taking ctx for extended periods and I am wondering if this is due to treatment being too conservative. There is an increasing awareness of the damage done by medication and this may have lead to a reduction in the doses given out. When I was first treated 25 years ago I was given huge doses of medication, but the Wegener's symptoms were put to bed within days. I did go on to have repeat flare ups, but these were caught and treated very quickly and did not cause me too many problems. My theory now is that treatment should be quite aggressive, but then discontinued as soon as the disease seems to be under control. This is not backed by any medical evidence or even experience! ;)

Sangye
08-24-2010, 10:34 PM
Raj, I agree. That's just not right for you to be on ctx that long. Either it works within the first few months or it doesn't.

Jack, I think higher doses of ctx were killing too many people. That took care of the Wegs, but the price was a little steep!

Ragamuffin
08-24-2010, 11:53 PM
I've taken Bactrim for several years now. During allergy season I stay on twice daily. Other times during the year I drop to once daily and then if everything is good I take one twice weekly and then sometimes I stop for a while. Watch your white blood cells though. They will drop some. Also, I drink homemade Kombucha and take other pro-biotics to preserve my healthy bacteria.
For me, nothing has helped my sinuses and throat like Bactrim. Also, flushing my sinuses religiously makes a difference as well. I've started "oil pulling". It's gargling coconut oil for 15 minutes and then spitting out the toxins. Can't hurt to try.

Sangye
08-25-2010, 12:57 AM
Ragamuffin, please use caution when taking Kombucha. It has immune-boosting properties which will counter the effects of your Wegs treatment. It also can be easily contaminated with aspergillus-- a fungus that likes to infect immune-compromised people. If you're using it to get pro-biotic support, there are safer ways.

elephant
08-25-2010, 08:13 AM
Ragamuffin, who do you see for Weg specialist? I noticed you live in Chicago area, and there is not WG specialist that I know of.

Nancy
08-25-2010, 12:43 PM
Hi Everybody!!
I have been on daily bactrim DS for many years. It does not affect the Wegs directly but is highly protective - primarily against Pneumocystis Carinii (PCP) most frequently seen in immune supression with HIV/AIDS pt's. The Bactrim prevents potential Flare ups by reducing the potential for sinus infection - killing off bad nasal bacteria - which has been know to stir sinus to pulmonary or systemic reaction/flares... I am not certain why people are taking 2 Bactrim daily - especially over a long period of time.. You are just potentially depriving yourself of a quality "cheap" antibiotic if needed for other issues ( i.e. urinary tract infections or even Methicillin Resistent Staph Aureus ( MRSA) which due to decreased immune status - all of us could be susceptible to if in a Long-term care home or hospital environment... The studies that I have reviewed show that one Bactrim daily is effective. I do not have a doubt that the every other day routine is good as well...but daily doesn't bother me... Old drug, cheap and effective... So rare with the WEGS treatment plans as discussed... I am with you Jack - my Grandfather used to spend 3-4 months year in Europe traveling on the rails. He got sick and was well treated in London for a Kidney issue - I wish that we were more focused on preventative medicine versus arguing about who will pay to pick up the pieces... We do less with each dollar spent than many other countries although we provide good medical care...
I agree with Sangye about the use of immune boosting foods and drinks. I know that I used to grow my own wheatgrass and other sprouts for salads... Then when I saw the level of bacteria that could result and the possible transmission - I now even avoid sprouts, etc on salad bars, etc...Good for others - not for WEGs compromised immune status issues. Interesting always to hear what other people are doing for treatment..

flana
08-25-2010, 03:43 PM
Raj, I agree. That's just not right for you to be on ctx that long. Either it works within the first few months or it doesn't.

Jack, I think higher doses of ctx were killing too many people. That took care of the Wegs, but the price was a little steep!

I agree with y'al... my primary rheumi replied that he did not believe in ANCA's... I am now planning on switching to my secondary rheumi @ stanford. He seem to be of the same camp as you all... Will see when I can get an appt with him... hopefully soon...

Sangye
08-25-2010, 11:33 PM
That's good to hear, Raj. Your primary rheumy was right about ANCAs, though. They're not reliable. My JHU doc rarely orders one--mostly just out of curiousity but never to measure Wegs activity.

At any rate, I'm glad you're not continuing with a doc who doesn't follow standard of care medicine. No one anywhere advocates keeping patients on ctx that long. It's universally accepted that they should wean you off within a year at the very latest.

pberggren1
09-01-2010, 10:33 PM
My new doc says only 3 months of ctx.

brocky99
09-03-2010, 02:20 AM
When i saw dr on monday at hospital it was the usual hi lisa how r u so my immediate reply was yeah im fine thanks. So off he goes with the consultation saying he his going to take me off most of my tablets including the bactrim so i was quite happy because i know most of the tablets i take were to counteract the result of my kidneys failing, and he was going to reduce pred as well, then at the end he asked have u any questions to which i told him about the rash and nose bleeds so then he said forget what we have just discussed for last 15 mins and continue with everything. I was gutted but still it was my own fault. xx

I only did 3 months of cytoxin when i relapsed then went onto aza daily.

Jack
09-03-2010, 02:35 AM
I think he made the right decision there! Any Wegener's symptoms should not be ignored or you can end up in big trouble. Remember that activity is not always reflected in the blood results so your own bodies reaction should always be considered first. Maybe increasing your meds would have been the better move.

If I was in a position to reduce medication, coming off Bactrim would be one of the last to go. It seems to be very effective and carry few side effects if you are not allergic to it. Some people stay in remission on Bactrim alone.

JanW
09-03-2010, 02:39 AM
I agree with Jack and think that any doc should be asking a question more specific than: "how are you feeling?" anyway. That should be followed up with: any new symptoms? What about your old symptoms? I see my guy every six weeks and thats always the first questions.

My ENT just makes me take a deep breath in and out, and that's good enough for him (I had a stenosis repair done by him in March).

brocky99
09-03-2010, 02:52 AM
I know right decision was made and my rash was one of the first symptoms when i was first diagnosed so I know deep down something isnt right. I think replying to the question r u alright with a yes im fine is a typical weggies thing i say it so often because we dont look very ill so if u say no im not ok they look at u as if u have 2 heads. im sure u all know what i mean. Anyway the dr was a dr I have never seen before in clinic because i now dont have to go to clinic at the hospital where i was 1st dignosed because they hold a clinic at the dialysis centre every 6 months but he told me he wanted to see me every 4 weeks, so he his keeping a close eye on me. I have seen him on ward rounds before now when i have been in hospital but never really spoke to him directly one to one so it ois just a case of us both getting to know each other if that makes sense. They took more bloods last night so hopefully will have some answers by friday.

elephant
09-03-2010, 03:23 AM
Brocy it is better to be safe than sorry. When you get your kidney transplant you will be on the simular drugs we are on now. It may keep your WG quiet.

brocky99
09-03-2010, 03:35 AM
The drs have mentioned that. the problem is the dr i saw last monday didnt seem hopeful of a transplant if wg doesnt go into remission so its a waiting game at mo. They r going to look into it again in feb next year which will be 12 months from last flare but if i am having a flare now it will be 12 months from now before they can look into a transplant.

Jack
09-03-2010, 04:12 AM
I was on the transplant list when I was still having Wegener's flare ups. They seemed to think they could control it well enough to protect the new kidney. I don't think I had any more flares after transplant, but it must have been a close run thing because I was certainly still having trouble around that time.

elephant
09-03-2010, 08:54 AM
Jack were you on two medicines for your transplant. When I had mine 1989, mine was a perfect match and the doctors only put me on cyclosporine and prednisone. They said if I was a lower match I would of been on two potent medicines plus prednisone.
You can always get a second opinion to see if you can get a Kidney Transplant sooner?

Jack
09-03-2010, 08:45 PM
I was being treated with the usual drugs for Wegener's and these did not change when I had the transplant, there were just some minor adjustments.