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hilhoff
11-18-2010, 05:57 AM
is anyone else taking this horrible medicine? it makes my tounge go numb, its thick yellow nasty smelling stuff.

Brooke
11-18-2010, 06:04 AM
Not taking it and I don't think I have ever heard of it.

Jack
11-18-2010, 06:46 AM
Not come across it on the Forum before. Is it used in place of Bactrim?

DEE
11-18-2010, 07:16 AM
googled it an anti b

hilhoff
11-18-2010, 12:52 PM
yeah its another form of Bactrim since im allergic to sulfa. just wanted to know if anyone else was taking it in place of the Bactrim and what they thought about it, personally i hate it.

norcalian
09-02-2011, 05:42 PM
I was just prescribed this medicine. I start tomorrow morning. Supposedly I'm suppose to be on it for the long haul as a PCP profylaxis. Anyone have any experience with this? Even the pharmacist said it was nasty to take. how are the side-effects?

Stephanie78
09-03-2011, 03:39 AM
My husband has been on Mepron since June. Bright Neon Yellow thicker then anything I've ever seen before (Medicine wise). It has caused his taste buds to go a little crazy. Makes his tounge sore at times as well. Is constantly on a medicine to treat thrush (But that could be caused by ANY of his medications). MOST expensive medicine we have purchased to date! Unfortunatley John has an allergy to Sulfa drugs and the Dapsone he was on messed with his liver so Mepron was the only other option for him.
BE CAREFUL it stains! Use a dropper NOT a cup (Or you will have to use your tongue to get it out YUCK!). John walks around with a yellow mouth due to it staining even the skin.
As for other side effects. He is on 18 different medications a day so any systems he has could be caused by ANY of them (Metallic taste. numbness. sore tongue) But the sore tongue did not start until the Mepron and it is the ONLY medicine that touches his tongue as a liquid.
Good luck guys!

norcalian
09-03-2011, 12:12 PM
My husband has been on Mepron since June. Bright Neon Yellow thicker then anything I've ever seen before (Medicine wise). It has caused his taste buds to go a little crazy. Makes his tounge sore at times as well. Is constantly on a medicine to treat thrush (But that could be caused by ANY of his medications). MOST expensive medicine we have purchased to date! Unfortunatley John has an allergy to Sulfa drugs and the Dapsone he was on messed with his liver so Mepron was the only other option for him.
BE CAREFUL it stains! Use a dropper NOT a cup (Or you will have to use your tongue to get it out YUCK!). John walks around with a yellow mouth due to it staining even the skin.
As for other side effects. He is on 18 different medications a day so any systems he has could be caused by ANY of them (Metallic taste. numbness. sore tongue) But the sore tongue did not start until the Mepron and it is the ONLY medicine that touches his tongue as a liquid.
Good luck guys!

Thanks for the response. The side effect I'm worried most about is wacked-out taste buds. Right now food is tasting weird to me mostly because I've been on a bunch of different antibiotics to treat PCP. I have to take Mepron for a profylaxis going forward. I'm really hoping that it won't mess with how food tastes. I mean, it's really all I've got these days.

You're not kidding about the cost of Mepron. I think it's about $1500 for a one month supply. Fortunately my insurance covers pretty much all of it. But between that and the RTX I'm costing my HMO an arm and a leg. I guess it makes up for the 36 years of really good health I had prior to getting sick.

Rini
09-03-2011, 06:26 PM
I think this is the stuff they gve me in the hospital, it was so thick....and now i can not eat any banana flavored candy ...

Stephanie78
09-04-2011, 05:41 PM
That has to be it Rini. In the hospital Johns tasted like banana. However when he got it from the pharmacy to take at home it was more of a spicy medicine (so he says) we pay $55/mo but retail is $1700 for our pharmacy
Now the one thing we haven't established ....is this a maintenance med or will it be long term. Any of you know?

Trudy
09-05-2011, 12:53 AM
Somewhat off topic, but has anyone heard from the young girl that started this thread? She is somewhat in my area and I was just wondering. Hope no news is good news!

norcalian
09-05-2011, 04:47 AM
That has to be it Rini. In the hospital Johns tasted like banana. However when he got it from the pharmacy to take at home it was more of a spicy medicine (so he says) we pay $55/mo but retail is $1700 for our pharmacy
Now the one thing we haven't established ....is this a maintenance med or will it be long term. Any of you know?

Hey Stephanie,

I was told by my Infectious Disease Doc that I would be on Mepron for the rest of my life...which is depressing as you know what the stuff is like. But I don't know if that is necessarily true. Mepron is used to prevent PCP. PCP is most prevalent in the HIV community. I know that when an HIV patient's CD4 cell count exceeds 200 (or something like that) they can usually stop taking the PCP profylaxis. I would imagine the same would be true for those of us with auto-immune disorders when we reach a certain level of medication-free remission (perhaps a lower level of pred, or when it's been long enough since the CTX treatments - or when we're off everything all together). It might be my case that I will be on a profylaxis for the rest of my life because I actually had PCP...but again, I really hope not. I meet with my Rheumy this week so I will ask him. I hope your husband can get off of it soon.

I haven't had the benefit of tasting banana flavored Mepron...mine is suppose to have a citrus flavor to it. But really it just ends up tasting like citrus flavored grossness. I don't know why they just don't put them in gell caps...

Sangye
09-05-2011, 08:52 AM
If it were me, I'd get a second opinion from an ID specialist at a major institution. Maybe having had PCP makes you more prone to getting it again? Mepron is a very harsh drug that is hard on the liver. Not something you'd want to stay on unless absolutely necessary.

norcalian
09-05-2011, 12:16 PM
If it were me, I'd get a second opinion from an ID specialist at a major institution. Maybe having had PCP makes you more prone to getting it again? Mepron is a very harsh drug that is hard on the liver. Not something you'd want to stay on unless absolutely necessary.

I'm with you on that Sangye. I would really rather not take Mepron for as long as the rest of my life. I plan on getting a second opinion. I'm actually trying to get a consultation with Dr. Chung at UCSF. My insurance won't cover it so I have to figure out how to pay for it. But PCP prophylaxis will definitely be one of the subjects I want to discuss. I am worried though that the reason my ID doc says I will be on Mepron for the rest of my life is because I had PCP...if that's the case, then that's a real bummer. I do want to explore the possibility of switching to Bactrim when I can (My allergy to sulpha drugs is questionable, but my Rheumy refuses to let me try it while on such high doses of prednisone...not exactly sure why - but he seems to think it's too dangerous). I might also consider trying inhaling pentamidine once a month...although my ID doc says that Mepron protects better than inhaling pentamidine. But i am worried about Mepron and my liver. I guess it's all a trade off somehow.

jola57
09-06-2011, 06:15 AM
Why is it absolutely necessary for you to be on the PC pneumonia propylaxis, are you considered a greater risk than we are? My wegs is in my lungs, but only on cylo did I have Bactrim. Now on mtx I take nothing more than follic acid and multivitamin.

norcalian
09-06-2011, 07:07 AM
Why is it absolutely necessary for you to be on the PC pneumonia propylaxis, are you considered a greater risk than we are? My wegs is in my lungs, but only on cylo did I have Bactrim. Now on mtx I take nothing more than follic acid and multivitamin.

I might be a higher risk because I had PCP. That's why I need a second opinion. I should repeat the fact that I was never on CTX. I was on really high doses of pred for a long time, 4 RTX infusions and imuran. That was enough for me to get PCP (I should also mention that I had significant lung involvement with my Wegener's). I did find some interesting information online regarding PCP and autoimmune disorders in terms of prophylaxis (I'll include a link below). These researchers seem to think that we should have a PCP prophylaxis whenever we're on more than 20mg/d of pred along with another immuno-suppresent...they name MTX/CTX, but I would assume Imuran and Cellcept would also be on that list. However, since I seem to be the only one on here that has had PCP, maybe my case is an extreme outlier and what everyone is doing is sufficient. I kept asking my Rheumy about PCP prophylaxis, but he felt since i was allergic to Sulpha antibiotics (supposedly) and not on CTX that a prophylaxis would not be necessary. Even when I was getting sick, I had to get aggressive to get my doctors to consider PCP. My Rheumy was pretty shocked when I was confirmed with PCP...although it's something I had been worried about all along. After 2 weeks in the hospital and a pretty laborious recovery I sometimes find myself wishing I could be my own Dr. and treat myself :smile1:

Treatment and prevention of Pneumocystis pneumonia in non-HIV-infected patients (http://www.uptodate.com/contents/treatment-and-prevention-of-pneumocystis-pneumonia-in-non-hiv-infected-patients)

drz
09-06-2011, 10:24 AM
Treatment and prevention of Pneumocystis pneumonia in non-HIV-infected patients

link above explains well why we ( at least some of us) are at risk for PCP and with a mortality rate as high as 67% it is easy to understand the preference for prophylaxis treatment.

Quote from study above:
We suggest PCP prophylaxis for patients with rheumatologic diseases who are treated with significant doses of glucocorticoids (eg, ≥20 mg of prednisone daily for one month or longer) in combination with a second immunosuppressive drug, particularly a cytotoxic agent (eg, cyclophosphamide), as is commonly used in granulomatosis with polyangiitis (Wegener’s) (Grade 2B). (See 'Indications' above.)
For most patients who require PCP prophylaxis, we recommend trimethoprim-sulfamethoxazole (TMP-SMX) (Grade 1A but this won't work for those of us with sulfa allergy.

Rini
09-07-2011, 02:46 AM
i am on regular sulfameth (spelling?) to prevent pneumonia, 3 times a week...with methotrex, is this a common combo or is the banana poison more common?

Psyborg
09-07-2011, 04:37 AM
Rini, that is the most common combo I think. That is what I'm on as well.

norcalian
09-07-2011, 04:53 AM
i am on regular sulfameth (spelling?) to prevent pneumonia, 3 times a week...with methotrex, is this a common combo or is the banana poison more common?

I like that..."banana poison" - very funny :laugh:.

Bactrim/Septra is the most common and I believe best prophylaxis for PCP. Mepron or Pentamidine is what they give those of us who are allergic to sulpha antibiotics. I've heard in a couple of places that Bactrim might actually help in maintaining remission...not sure if that's true or not. I think it's tied in with the theory of strep and other bacterias having something to do with WG flare-ups (emphasis on theory - someone posted an article along these lines in another thread somewhere). Someone please correct me if I'm totally wrong about this.

Sangye
09-07-2011, 08:33 AM
Banana poison... http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

Yes, some people do seem to stay in remission better with Bactrim. It didn't make any difference for me.

Rini
09-07-2011, 10:26 AM
I think it's tied in with the theory of strep and other bacterias having something to do with WG flare-ups (emphasis on theory - someone posted an article along these lines in another thread somewhere). Someone please correct me if I'm totally wrong about this.

we were talking about diseases in history class, how when the Americas were found lots of stuff was traded and people died from the uneducated immune systems...I got "strep" so many times @ the start of this. Looking back i think it was just the starts of WG w/ no one to ID it. Its strange 2 c the map of us WG's tho. Is it so concentrated just on education and people being able to be diagnosed or are there really so many less people with it in the empty spots?

pberggren1
09-07-2011, 10:57 AM
You have a good sense of humor Rini!!!!

I really think that Wegs is more common than we think. My doc believes that it is more like 1 in 5,000.

I read a recent stat that said that 1 in 500 are affected with Vasculitis.

RudiK
09-07-2011, 11:18 AM
Rini, I'm also on Sulfameth three times a week and CTX twice a day. My dr explained that it was to prevent any sort of lung infections, especially PCP. Rudi K

Rini
09-07-2011, 02:02 PM
:hug3:PARTY ! that's a lot of people, :( i am relived 2 know the drug combo i am on not is not uncommon. For a little while i was taking the folic on metho days but then i found out that is bad... so it is nice 2 know that i am on reasonable drugs now...i am just trying to make it until x-mas when i have my Cleveland appointment and can get this all official and sorted. I just moved and need to change doc.s and everything is kinda all over the place but my curent doc has herd of WG and says he knows what hes talking about....i just want to hear from someone I KNOW has the right info, yk? (thank you guys!)

norcalian
09-07-2011, 03:33 PM
we were talking about diseases in history class, how when the Americas were found lots of stuff was traded and people died from the uneducated immune systems...I got "strep" so many times @ the start of this. Looking back i think it was just the starts of WG w/ no one to ID it. Its strange 2 c the map of us WG's tho. Is it so concentrated just on education and people being able to be diagnosed or are there really so many less people with it in the empty spots?

I had read somewhere that the over-hygenic nature of Western culture was to blame for the higher number of people with auto-immune diseases...basically as children we were not exposed to enough germs to teach our immune system the difference between good and bad cells. The result in adulthood is an immune system that goes nuts and attacks our good cells as well as the foreign bodies. I recently watched a documentary called "Babies" - If you're not familiar with it, it's basically a bunch of different film crews that followed babies in their first year of life in a bunch of different places and cultures. It's actually a lot of fun to watch. It was interesting seeing the babies in the third world countries (where there's not a lot of documented cases of auto-immune diseases - for whatever reason) spending most of the day sitting in dirt and eating mud. I mentioned to my wife that I thought that perhaps there is something to the theory or an overly-hygenic Western culture. However, I don't believe that I grew up in an overly hygenic home. I spent plenty of time playing in the dirt of my back yard eating mudpies...and yet I ended up with one of the deadliest of auto-immune disease. So ultimately, who knows...but interesting to think about :smile1:

Stephanie78
09-09-2011, 05:09 AM
[QUOTE=norcalian;46421]Hey Stephanie,

I was told by my Infectious Disease Doc that I would be on Mepron for the rest of my life...which is depressing

Holy crap! That is depressing! John HATES IT. But he has learned a trick over the past couple of weeks. As soon as you take it, drink something and rinse your mouth out. He was having horrible issues with his tongue being sore as well as thrush etc... Ever since he started following up with this regime he hasn't been having those problems. Seriously...As much as the medical community does with drugs you would THINK they could do this in PILL form....

Stephanie78
09-09-2011, 05:13 AM
Why is it absolutely necessary for you to be on the PC pneumonia propylaxis, are you considered a greater risk than we are? My wegs is in my lungs, but only on cylo did I have Bactrim. Now on mtx I take nothing more than follic acid and multivitamin.

My husband had an allergic reaction to Bactrim. He then had an issue with the Dapsone and that basically left him with Mepron. He has only been on it since June BUT to him it seems like forever!

drz
09-09-2011, 05:44 AM
My husband had an allergic reaction to Bactrim. He then had an issue with the Dapsone and that basically left him with Mepron. He has only been on it since June BUT to him it seems like forever!

I had a sulfa allergy so Bactrim was out for me. Dapsone broke by red blood cells and caused anemia. Mepron (banana poison) gave me a rash for two weeks like I was rolled in poison ivy. So I do pentamadine nebulizer treatments monthly.

norcalian
09-09-2011, 06:38 AM
As much as the medical community does with drugs you would THINK they could do this in PILL form....

Seriously...would it be so hard to stick this crap in a few gel capsules??

I spoke with my pulmmy today about Mepron and Bactrim. The "sulpha allergy" in question was placed on my file because of a mild reaction I had to some really old eye drops I used years ago. I got pink eye from my kid, did not have very good insurance at the time. My mom had these eye drops from a while back so I used them. I got some additional redness (could have just been the conjunctivitis) and some med student said they thought I had an allergy and put it in my file. Fast forward a few years and I have Wegener's and i would really like to use a sulpha based antibiotic...but my Rhuemmy says no way for reasons I don't fully understand. My Pulmmy wants to have me try bactrim anyway...I think the long term ramifications of Mepron vs. Bactrim in both cost and health are worth checking it out. I'm getting a new Rheummy in a couple of weeks, so maybe things will change a bit...we'll see.

Sangye
09-11-2011, 12:03 PM
Seriously...would it be so hard to stick this crap in a few gel capsules??


That made me laugh out loud. http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)