My meds

[Anth]

So the medications i am on are;

Prednisolone 5mg Daily
Methotrexate 25mg weekly
Bactrim DS 800/160mg Mon/Wed/Fri
Somac 40mg Daily
Megafol 5 daily except for when i take my methotrexate
Osteoapatite with Baron Daily
Vitamin D drops daily
Multi-vits Daily
Krill oil 1000mg daily

Has anyone been on similar Meds and doses? If so whats your progress been like?

Also my specialist has said something about trying something else called imuran or something? instead of the meth.. have people tried this with success? apparently though its an everyday thing that you inject yourself not a once a week tablet like Methotrexate.

Thanks heaps in advance for your comments.

Cheers, Anth

[annekat]

I'm on 10mg. pred/day, 15mg. MTX/week, and probably the same dose of Bactrim 3x/week. Plus 1000mg. folic acid a day. The lesser MTX dose is probably due to my lesser body weight and the fact that I'm further into my treatment so am on more of a "maintenance" dose. I've had trouble in the past lowering my pred dose say from 15 to 10mg., so I guess I'm kept at 10 until we are sure we are ready to lower it. This "cocktail" seems to be working very well for me. As long as I don't get too stressed, my symptoms on many days are minimal. But it was CTX and not MTX that got me over the worst of my Wegs, since I had lung involvement and needed something stronger. However, with just nasal, sinus, ear, and joint involvement, MTX seems to be more commonly prescribed.

[drz]

MTX and generic Imuran (azathioprine) are two most common meds for GPA after we switch from CTX or RTX. Which one is best for you depends upon your medical history and lab results so your doctor can advise you on that issue.

[annekat]

MTX and generic Imuran (azathioprine) are two most common meds for GPA after we switch from CTX or RTX. Which one is best for you depends upon your medical history and lab results so your doctor can advise you on that issue. But if you are starting on MTX, which it sounds like you are, and not on CTX or RTX, it must be because your case is not deemed severe enough to need the stronger meds at this point. Right, drz?

I can't speak for how MTX works as the original treatment drug, since I started on CTX. But I know there are others on here who are or have been treated with MTX from the beginning without having taken CTX or RTX. (I don't know whether azathioprine is ever used as the beginning treatment med.)

[drz]

Some people can't take CTX or have RTX available so a milder one may be only option, but yes this would happen mainly in less severe cases where death, or damage to a major organ is not happening or likely to happen.

[annekat]

Some people can't take CTX or have RTX available so a milder one may be only option, but yes this would happen mainly in less severe cases where death, or damage to a major organ is not happening or likely to happen. It just seems to me that there are a few on here who were started on MTX, not necessarily because they can't take CTX or get RTX, but because they have a lighter case, and probably only in the upper respiratory tract and maybe some joint pain. Unfortunately, it seems like most of us have severe enough problems that we need to start with CTX or RTX.

[Debbie C]

I was started on CTX, Pred,Bactrim, Folic Acid and Vit D. But my ruemy here took me off everything after 6 months. It was the Cleveland Clinic ,that has me on Pred. I am just a wuss when it comes to meds that I can not tolerate the MTX,AZA,Imuran or the RTX infusion( I tried them all ) so that's why I'm just on pred.Maybe if I would have given one of the meds more time to adjust I could of handled it but they all made me ill. But Anth ,Imuran does come in pill form also so you don't have to inject yourself.I know I could never do that to myself....I'd make a horrible drug addict !!!

[Anth]

Being a horrible drug addict is a good thing Debra! I dont know if i could do it either but i want to try because i think i will get better results this way and my specialist seems to think that doing it this way might not make me feel so ill.
I have a really weak stomach and can never get used to the pills..

I also had 3 rounds of CTX through IV while and after i came out of hospital.. sorry i forgot to add that.. So many things happened in those few weeks.

[drz]

I was started on CTX, Pred,Bactrim, Folic Acid and Vit D. But my ruemy here took me off everything after 6 months. It was the Cleveland Clinic ,that has me on Pred. I am just a wuss when it comes to meds that I can not tolerate the MTX,AZA,Imuran or the RTX infusion( I tried them all ) so that's why I'm just on pred.Maybe if I would have given one of the meds more time to adjust I could of handled it but they all made me ill. But Anth ,Imuran does come in pill form also so you don't have to inject yourself.I know I could never do that to myself....I'd make a horrible drug addict !!!

Some people use cellcept and I guess there are also some other alternatives but the common ones tend to be the most effective it seems. I started on a very low dosage of azathioprine and went up very slowly and had very few symptoms that way and most symptoms went away in a few days.

[Alysia]

It just seems to me that there are a few on here who were started on MTX, not necessarily because they can't take CTX or get RTX, but because they have a lighter case, and probably only in the upper respiratory tract and maybe some joint pain. .

Hi Anne, I never got CTX, although I almost died from inflmation in my lungs. pred alone 60mg cleared my lungs although the scars remain. about 6 docs (4 lungs docs + 2 reuhmy) were consulting if CTX is needed and decided not to give it to me. I was glad not to take this scary med. although in retrospect this could have helped me get into remission. and after that things only got worse, and then i started MTX, and then RTX.

[annekat]

Hi Anne, I never got CTX, although I almost died from inflmation in my lungs. pred alone 60mg cleared my lungs although the scars remain. about 6 docs (4 lungs docs + 2 reuhmy) were consulting if CTX is needed and decided not to give it to me. I was glad not to take this scary med. although in retrospect this could have helped me get into remission. and after that things only got worse, and then i started MTX, and then RTX. Yes, CTX is a scary drug, but lots of people have taken it to get their Wegs under control quickly and effectively in a fairly short period of time, and are doing OK today without having been harmed by it, that we know of. If we were cancer patients taking it, the doses would be much higher, but I guess for a shorter period of time. All the drugs have their dangers, ill effects, and risks. In my case, I'm glad I took CTX and that it worked as well as it did. I'm not sure I needed to be on it for as long as I was.

[drz]

Yes, CTX is a scary drug, but lots of people have taken it to get their Wegs under control quickly and effectively in a fairly short period of time, and are doing OK today without having been harmed by it, that we know of. If we were cancer patients taking it, the doses would be much higher, but I guess for a shorter period of time. All the drugs have their dangers, ill effects, and risks. In my case, I'm glad I took CTX and that it worked as well as it did. I'm not sure I needed to be on it for as long as I was.

I am glad that CTX helped me but even more glad to be off CTX, aren't you?

[JeanMarie]

Anth, I think your drug regimen is pretty average for wegs & usually good to control the beast. BTW nice fish, where did you take him?

[Anth]

I thought so but I still get so many pains and inflammation.. the other week I saw my specialist and all my bloods came back how they have been for the past 3 years but I have a lot more pain and coughing up of fresh blood.. I'm confused..

[Anth]

The fish was taken about 60Km south of Portland harbour near the continental shelf.. it was one of a pigeon pair me and my brother caught that day. we worked so hard for those fish.. Its a 2.5 hour run to the shelf in 4-6 meter swell.. Portland is an hour away from the S.A border if you were wondering..

[drz]

I thought so but I still get so many pains and inflammation.. the other week I saw my specialist and all my bloods came back how they have been for the past 3 years but I have a lot more pain and coughing up of fresh blood.. I'm confused..

Symptoms of Wegs and lab results don't always correlate for many people. That is why an experienced Weg doctor is helpful as they usually give more weight to your clinical presentation and learn how your body reacts to various things. My lab results tend to lag my symptoms by a few days but otherwise they correlate pretty close for me which makes management of my Wegs easier.

[annekat]

I am glad that CTX helped me but even more glad to be off CTX, aren't you? Of course I am glad to be off CTX. I think my doc could have taken me off it and switched me to MTX sooner than he did. But I am also glad I did not have to go through the whole rigamarole of RTX. Of course, I do not know what the future my hold. CTX may get the vote as the scariest drug, but I think they are all scary.

[Anth]

Hey everyone! I've been gone for a while trying to get myself better... I had a little bit of a flare and went back into hospital overnight. The docs decided it was time for me to start injecting my meth.
I've been injecting 25mg (1ml) of meth once a week.. apart from being a bit of a pain to inject myself I'm finding it a lot better than taking the tablets. I don't feel as fatigued and the yuck feeling doesn't last as long.
I'm still not 100% though.. My doc thinks I have an infection somewhere and they are trying to find it at the moment. He thinks that's why I have been really up and down lately.

Its great to be feeling better than I was and getting back to my normal routine. I hope everyone is well and I hope to hear from you all.

Cheers, Anth

[mishb]

Good to see you back out and about Anth.

I'm glad the injections are not making you feel as bad as the tablets were.

Have they put you on a broad spectrum antibiotic to try and fight the infection, or is it just a wait it out and see, type of thing?

[Anth]

Thanks :)

I am already taking bactim Monday Wednesday Friday. He was saying something about it being in my bladder possibly or somewhere there.. I'm hoping the blood tests I've just had done show exactly whats going on. There has been a tiny bit of blood in my urine as of late..

[Alysia]

He was saying something about it being in my bladder possibly or somewhere there..

Hi Anth,
is it an inflamation because of wg or because of other reason ?
I had 2 bladder inflmations the past year, not because of wg, just because of the weekness of my immune system (I also had some throat inflamations).
the problem with bladder inflamtion is to find the correct antibiotics. if you are on bacrtim already, your urine culture may not reflect your state. I can tell that I tried about 4 antibiotics (including bactrim) and the only one that helped me was macro-dantin.
I hope you will soon feel better.

[Titus3:2]

Hi Anth,Imuran is usually prescribed as a maintenance drug.I am currently in remission ,and taking 150mg tablets daily.Methotrexate 25mg a week did not work for me,and Cellcept did not work .I had a flare up while taking both not at the same time.I am also taking Septra DS Mon,Wed,and Friday.This is to reduce the possibility of getting an infection.Good luck.