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kevinallen
10-12-2013, 02:26 AM
Hello, I was off all pills and treatment and was in remission for 8 months and then my doc said he wanted to start me on meth for a year. I have now been taking for about 3 months and dont know if I want to continue taking, any thoughts

pberggren1
10-12-2013, 05:58 AM
Is your doc a Wegs expert?

NikkiNicole
10-12-2013, 05:59 AM
As a law enforcement professional, I have to admit, I read this as methamphetamine, not methotrexate. I've been on MTX for awhile now .. for me, there's no improvement thus far but ... every case is different.

pberggren1
10-12-2013, 06:04 AM
Same here Nikki......lol

kevinallen
10-12-2013, 06:09 AM
Haha oops lazy speller. Yes he is an expert, or as close to an expert as I can get. He said i would take it for a year and then be drug free again, but it just sucks because i hate taking pills

Wegetarian
10-12-2013, 06:12 AM
Yeah, me too...

Don't do meth dude... Just look at what it did to our beloved R2D2

http://www.funnysigns.net/files/r2d2-meth-not-even-once.jpg


I'm on methotrexate though, different drug :) Did I understand correctly that you were completely in remission and your doc wanted you to start using MTX for no reason at all? I mean you aren't too specific in your post.

Man I write long posts without having anything to comment. I hope you like R2D2 though :)

pberggren1
10-12-2013, 06:17 AM
If your doc treats many Weggies then I would go for the meth.

Debbie C
10-12-2013, 07:04 AM
That's funny ,my eyes went wide open when I saw your doc wanted you on meth. I am also in remission and going to start weaning off the pred soon, but if you and your blood work were fine, I sure as heck wouldn't take it. Did you ask him why and how much are you taking?

drz
10-12-2013, 08:03 AM
As a law enforcement professional, I have to admit, I read this as methamphetamine, not methotrexate. I've been on MTX for awhile now .. for me, there's no improvement thus far but ... every case is different.

I too got a chuckle out of the meth post but also agree the abbreviation of MTX is better way to refer to our meds.

kevinallen
10-12-2013, 09:04 AM
Ha the r2d2 picture is great! Ahh yes mtx does sound better, kinda reminds me of mountain biking ha. But yes, i was in a complete remission for 8 months and he said my blood work looked absolutely perfect, but then he said since i initially had a very bad outbreak that he wanted me to take it, and he said its nothing he wouldnt take if he was in my position. i just hate to use a drug when I feel perfectly healthy, but he said with the unpredictability of the disease it would be smart to take ittake it. I am taking 20 mg a week. Sometimes i feel like it fatigues me but I always work hard so I dont know.

Dirty Don
10-12-2013, 11:04 AM
If you're on 20 now, and holding well...maybe a maintenance dose of 15 would work, which seems to be a standard. I had a bad initiation to WG also...docs are in no hurry to get me off.

Debbie C
10-12-2013, 11:35 AM
My doc is weaning me off pred. He told me to lower it by 1 mg. every 2 weeks,which seems kinda fast too me so I'm gonna take it slow, But I will be on nothing and I really didn't tolerate the other drugs so I don't know what he would do unless put me back on preds again. But I don't want to think that right now. But why did he wait 8 months and since you are still doing well. I don't know , I think the less of this crap we have to put in our body the better off we are.

Wegetarian
10-12-2013, 11:53 AM
Fwiw a rheumy I talked to did consider MTX to be safe, he said its administered to kids and he has many patients taking it - some he said, had taken it for over 10 years with no issues.

Still, maybe it would be wise to ask for a second opinion. Sounds strange to start taking drugs all of the sudden-

Dirty Don
10-12-2013, 12:40 PM
I think the less of this crap we have to put in our body the better off we are.

Really? Think about that again and where any of us would be if that 'crap' wasn't in us...

mishb
10-13-2013, 12:25 AM
Same here Nikki......lol


Yep, me too.

I thought it was going to be another cure all :razz:

Wegetarian
10-13-2013, 07:05 AM
I thought it was going to be another cure all :razz:

It might take away our fatigue :D Us wegs on high doses of pred and amphetamines... who wants to run a second marathon!

Debbie C
10-13-2013, 09:52 AM
Really? Think about that again and where any of us would be if that 'crap' wasn't in us...

Don, I know the drugs have saved alot us and many of us have to keep using them to stay alive but I just don't understand if he was drug free for 8 months why all of a sudden go back on mtx. I could see if he was having a flare.
And there are really no polls that I have heard of that shows what these drug cocktails do to the body.. I have heard that they can cause cancer and who knows what else. I know the pred. is tearing up my stomach up and making my skin so thin that if a just hit my hand wrong I get broken blood vessels.I just wish there was a more natural ( maybe going gluten -free, maybe medicinal marijuana, something ) that the pharamacutical companies aren't getting rich from.

drz
10-15-2013, 03:38 PM
Any one who has had an organ transplant, and thousands have done so, will be on similar meds for rest of their lives. Many of these people live a long time too. It is nice when one can get drug free and maintain a remission for many years but the current research says only about 20% will do so. The rest will have a flare in a year or two and some of us are thought unlikely to survive a big flare so the meds seem like good insurance even though it does not guarantee freedom from a flare. It should decrease our chances of having a major flare and/or increase our chances of surviving one if one does occur.

Some of the research on fixing broken immune systems will most likely lead to a complete cure for most autoimmune diseases but it may still be a few years or even many years away so in the mean time we take our meds and try stay as healthy as we can as long as possible.

annekat
10-16-2013, 05:01 AM
I agree it seems weird to put you back on MTX all of a sudden when you are doing fine and your labs look great. And I agree with Don that if he really feels you must, then the standard maintenance dose of 15mg. might be more reasonable and might lessen some of the effects.

My neighbor was on MTX for 12 years for RA, I don't know the dose, I think it was higher than 15mg.; anyway, he really suffered no ill effects, and did not drink alcohol all that time, but after the 12 years, some liver issues started showing up in his labs, so they took him off it and put him on something else. The point being that we can go for a long time on MTX without many issues..... however, I don't see why you should need to put up with the fatigue and nausea, or whatever, if you aren't showing signs of flaring. Not to mention being unnecessarily immunosuppressed and therefore more susceptible to infections and whatnot.

There are different views on here as to what makes a doc a Wegs specialist. Perhaps your doc is not as experienced as say, the ones listed as true specialists on the Vasculitis Foundation website. From what I understand from reading on here, these docs are available for free consultations on individual cases, and perhaps your doc would be willing to do this if you question this aspect of your treatment.

Rose
10-16-2013, 06:28 AM
My pulmonologist was shocked to find that I was still on meds 3 years after diagnosis in 2011. My labs have always been fine though I have had a few minor flares which didn't show in my lab results. . My Rhumy on the other hand has always maintained that I should be on these drugs fro life rather than to come off and risk a major flare which they would have to treat again aggressively with solumedrol and cyclophosphamide again. There would be even more damage to the body from the flare and the drugs The nephrologist also thought I should start to at least reduce the drugs. My pulmonologist has now changed her tune as the lung scan I had in May showed active disease and she say my Rhumy is doing the right thing. But now I have this infection...so I guess in WG it is often a case of damned if you do and damned if you dont!

annekat
10-16-2013, 07:08 AM
Personally, I feel OK being on the meds indefinitely, maybe for life. I did have a minor flare when on a lower dose of MTX. I'm trying to taper pred and am down to 9mg. from 10. I want to get to 5mg. and then think I would stay there for awhile, which is what my doc implied, too. We will see how it goes, and every case is different.

As an aside, I've been out doing some fairly heavy yardwork today, digging and pulling up roots of plants that shouldn't be there, moving firewood around, stuff like that. It is making me feel really good! Helping me fight the blues and malaise, getting my circulation going, etc. I don't know that I could have done this work a year ago, and certainly not 1.5 or two years ago. Shows how much better I'm doing, how great physical exercise is, and I hope gives encouragement to those who are still in an earlier phase of recovery.

Debbie C
10-16-2013, 10:41 AM
When I went to the CC last time ,my dr. kinda off pissed me off. At first he said I seemed more relaxed and better and everything looked great. Then I had a list of questions a wanted to ask him and after waiting 3 hrs to do so I may have gotten a little impatient when him and my boyfriend starting talking football !!!!! I told him about this forum and all the info I get from it. I asked him about melatonin (sp) helping the immune sytem as well as helping sleep and also that other drug that was mentioned on another thread here that was being researched for wg that is now being use to treat cancer.He THEN proceeded to tell me how much he has done research on this and mentioned other hosp. like the Mayo Clinic , Unv. of Boston and serveral others that are good and he has never heard of this.And gave me a look.... I said you think I am an aniety ridden and something else ????I can't think of it know and he leaned back in his chair and he looked and boyfriend and just smirked. I was ready to slap both of them. I thought let me shove some pred. down your throat for 2 years and see how you act.But he basically was saying since he hasn't heard of it ,it isn't so. I think I will find those past threads ,copy them and mail them to him. Also get him a subscription to the Journel of Medicine !! :predrage:

annekat
10-16-2013, 01:30 PM
You tell 'em, Deb! Men!!!

I do know that melatonin helps sleep, because I use it for that. It doesn't take much, for me anyway..... and I may wake up a few hours later, but that is better than not getting to sleep. I can usually drop back off. It works best if I take it maybe a half hour or more before I want to go to sleep, as opposed to taking it and then lying there waiting for it to work. As for it helping the immune system, I vaguely remember that being mentioned in a thread, and would like to know more, if it is true.

drz
10-16-2013, 02:45 PM
Debra
Is he on the Vasculitis foundation list of consultants? If so he should get their newsletter. If not you can put him on their mailing list free. My internist thanked me for putting her on their mailing list.

Alysia
10-16-2013, 08:22 PM
and he leaned back in his chair and he looked and boyfriend and just smirked. I was ready to slap both of them. I thought let me shove some pred. down your throat for 2 years and see how you act.But he basically was saying since he hasn't heard of it ,it isn't so. I think I will find those past threads ,copy them and mail them to him. Also get him a subscription to the Journel of Medicine !! :predrage:

he sould also sign up to lessons in "good manners & politeness"...

Debbie C
10-17-2013, 02:52 AM
Drz..he is one of the head reumys at Cleveland Clinic and has written many articles and had researched this desease, he also speaks at the symposyams (sp) so he should be on the list.


Anne..yea someone posted 2 articles that some scientists are researching melontonin and that other drug..I'll have to find them.


Alysia,drs sometimes thank they are God and can do or say nothing wrong ...hope you are feeling better !!

drz
10-17-2013, 01:31 PM
Drz..he is one of the head reumys at Cleveland Clinic and has written many articles and had researched this desease, he also speaks at the symposyams (sp) so he should be on the list.


Very sad to for one know so much about a disease and nothing about how to help the people he tries to treat. I often get a form to rate my experience at Mayo Clinic where you give feedback about their services and how you felt about them so they can identify any problem areas. Does Cleveland Clinic do that too? It might help improve their services for you and others.

Pete
10-17-2013, 02:48 PM
I've never gotten a feedback survey from Cleveland Clinic.

Debra, next time, you may want to leave your boyfriend in the lobby so the doc stays on task. The Browns suck anyway - again...

annekat
10-17-2013, 03:01 PM
Yeah, sometimes when guys get together and there is sports talk, they sort of lose it.... I'd prefer to think that he is a good doctor but just had a momentary lapse..... however, his being dismissive about the melatonin, etc., does not sound out of the ordinary for doctors; I think they can be pretty resistant to any ideas about herbs or other substances being used in non-traditional ways against illnesses or conditions. I guess I could cut him a bit of a break considering how many people he sees and he probably gets a lot of weird questions from patients.... not that I think that was a weird one. I think docs should be more open minded about these things and if they have no response or answer, just say so respectfully and not make people feel small for even asking.

drz
10-17-2013, 03:03 PM
I've never gotten a feedback survey from Cleveland Clinic.

Debra, next time, you may want to leave your boyfriend in the lobby so the doc stays on task. The Browns suck anyway - again...

The best clinics I use both have such feedback forms. Others that I use that don't do as well, don't seek feedback from their customers which is why some places like Mayo are known for excellence because they make it a priority i guess. Maybe it is optional for the doctors and only the best doctors request it?