New member

[Lori]

Well just found out I have wegener's and I am having a real hard time with it they have put me on methotrexate and prednisone and so many other meds to And I have gained so much weight from the meds I wanted to know if anyone knows if it would be alright to take any herbal teas or detox teas while I am taking all these meds

[Middlesista]

Lori - it is overwhelming to be sure. Lots of great information and help on this forum. You can try to use the search function to see if anyone has info about using herbal or detox tea - I just use salada decaf ☺️

Knowledge of this disease and information are weapons that you need to help you battle for your optimal health. I am just 3 months in and have learned so much. Most important is make sure you have the right doctors - they need to be well versed in GPA and the treatments. The best option is a vasculitis specialist and the vasculitis information site is a great resource.

Hang in there and know you have friends here that truly understand what you re dealing with each and every day

[Lori]

Thank you so much

[annekat]

Welcome, Lori, I see you already have made an introductory thread as I just suggested on another thread.... sorry, should have looked first! If you are in early stages of treatment it is normal to feel rotten and discouraged, to not be used to the drugs, and all that, but remember that it does take some time and it will get better. This forum is the best place to get support and information as well as caring friendship, and I'm glad you found us. Ask or share anything you want, use the search function for specific topics, and rant away if you feel the need. We are here to listen and help. WG is a little different for everyone and you'll learn a lot from reading other people's posts and threads. Hang in there, and keep us posted!

[Debbie C]

Hi Lori,welcome to the "family"...sorry you had to join though. Like Anne said the meds do take some getting used to. I am one of those who isn't very good with meds. I was started out with cytoxin (ctx ) instead of methotrexate (mtx ) and pred. for 6 mos. I am now just on 5 mg pred. which unfortunately is a necessary evil. You will gain weight since it seems you are constantly hungry but if you watch what you eat and try to stay as active as possible it may not be so bad.How much are you on ? I for one love tea...I drink a lot of green tea, chamomile, and different herb teas. I also have detox but I don't drink that often. If I were you I would check with you Dr. before trying any detoxing. You need this drugs to work but you need to drink a lot of water.You might try infusing them with different fruits or cucumbers which will make it taste better.
Also it is VERY important that your dr. if familiar with wg.Before it is over with you will have a list of different drs. you need to keep up with ...I don't know where your wg involvement is but it can hit any part of your body so make sure you get monthy blood and urine tests.
I just came back tonight for a benefit for a old friend of mine you used to go to the same pcp as I did before. And she was dxed at the end of Nov with just a sinus infection..turns our now she has stage 4 lung cancer ! So please if you are unsure of any dr. get another......Good luck and let us know how you are doing or if you just have any questions..Take care.

[Mark76]

Welcome to the group...I too have only recently been diagnosed and undergoing treatment infact my 3rd round of cytoxan and ritiximab this week and hopefully last for a bit. It took me a while to adjust in having the disease but as ppl have said this forum is fantastic and so much support

Sent from my SM-G900I using Tapatalk

[mishb]

Hi Lori and welcome to the forum. I'm sorry that you have been given a WG diagnosis.

As mentioned, you will get some excellent advice on here, but just remember that we are not medical professionals and therefore you must also discuss with them, whenever thinking of taking any additional medications or supplements.

Deb, in regards to green tea, this is known to put possible stress on the liver and therefore people should avoid drinking green tea whilst they are taking any medication that also can affect the liver, such as Methotrexate. Also anything like warfarin or aspirin and green tea can impede blood clotting. It can also decrease the absorption of folic acid. Lori, this is another drug that you will have been given to take.

I wonder why they have given methotrexate to you if you already have a fatty liver, that's very strange.
I'm not sure about detoxing if you are still trying to get the condition under control. I personally would wait a little while, but I understand the need to get everything right and feeling as good as new again. We are all here for you.

I would love to hear about your road to diagnosis, when you feel up to it.

Until then, ask any and all questions that you can think of. Knowledge of this crazy condition is an excellent thing to have.

[Debbie C]

Deb, in regards to green tea, this is known to put possible stress on the liver and therefore people should avoid drinking green tea whilst they are taking any medication that also can affect the liver, such as Methotrexate. Also anything like warfarin or aspirin and green tea can impede blood clotting. It can also decrease the absorption of folic acid. Lori, this is another drug that you will have been given to take.


Michelle, thanks for the info, I always thought green tea was good for you..I drink it all the time. This is definitely something I will have to look into.

Lori,listen to Michelle and also check with your dr. before doing anything :)

[debra]

Oh,boy here's Deb... Haha... Just wanted to add something, and I'll stop at the one! Coffee is jam packed with antioxidants, but I'm sure you knew this already, but for that one that may not, there you go! Coffee, in moderation also protects the liver, and yes, helps in the repair of the liver, especially fatty liver disease... Coffee is as powerfull as dark chocolate providing its at least 70% caco... Ignore that typo, up there, its me... I know somebody here must miss me!!! Haha... Well, I miss you, regardless... Oh, and Lori, welcome to the jungle!.................... Debra...

[MaxD]

Lori, Welcome to the group. I second Middlesista's suggestion to make sure you consult a Vasculitis specialist - Vasculitis Foundation (http://www.vasculitisfoundation.org) is a good place to start, it has plenty of information and list of specialists and centers. Even if you are not close to one, most will work with your local doctor on your treatments. Wishing you a smooth recovery. Do read all the discussions of prednisone on this site just so you know what to expect with long term prednisone treatment.

[annekat]

Oh,boy here's Deb... Haha... Just wanted to add something, and I'll stop at the one! Coffee is jam packed with antioxidants, but I'm sure you knew this already, but for that one that may not, there you go! Coffee, in moderation also protects the liver, and yes, helps in the repair of the liver, especially fatty liver disease... Coffee is as powerfull as dark chocolate providing its at least 70% caco... Ignore that typo, up there, its me... I know somebody here must miss me!!! Haha... Well, I miss you, regardless... Oh, and Lori, welcome to the jungle!.................... Debra... Deb, I have heard that about coffee, but am wondering, do you know, does decaf coffee also contain the antioxidants? I don't really like decaf, but caffeine can stimulate my vertigo and coffee is therefore on the list of things not to drink. Maybe I could learn to like decaf if I thought there was something beneficial in it.

[debra]

Hello, there Anne... No Anne, decaf dies not, due to the process involved in the ridding of caffeine... Actually you'd be better off drinking nothing, because the toxins involved in the process... Also beware of the fluoride in green tea, though its not the same as an added floride, it can still effect the thyroid, ect... Anne, if you can stand a cup of full strength coffee, go for it... Lori, in my opinion, stay clear of any detox until you've studied herbs and are completely off these meds!!! This would be dangerous Lori, and I was on my way back to post, cause I couldn't believe I spaced this! Lori, the meds are considered toxins, so trying to rid toxins, while adding toxins, would be like insisting on pouring water into a glass with three holes on the bottom... Lori, please be careful, these herbs are not to be taken lightly, at all... Someday, when you're cured and med free, then do you're detoxing, after you've studied them for you're self... Good luck, Lori, and I agree with the other post, if you can get you're doc, to at least work with a vasculitis specialist, then good for you... Debra...

[annekat]

Good, I won't drink decaf, then, because as I said, I really don't like it! (I will be researching this to make sure). I would love a cup of full strength coffee, so it's not a matter of if I can "stand" it or not, it's that, as I have said before, it stimulates my vertigo! So does dark chocolate. So if I consume these things at all it is only in very small amounts, unless I feel my vertigo has not been an issue for awhile, in which case, I'll relax those rules.

[annekat]

Yup, sorry for the typos! Oh, just once! Just one post, minus the typos, and I'll be so happy! Deb... Deb, we really don't care about the typos, though I guess I should speak for myself.... truly, I barely notice them, if at all! BTW, you just did a post, albeit a short one, without typos.

[mishb]

Good, I won't drink decaf, then, because as I said, I really don't like it! (I will be researching this to make sure). I would love a cup of full strength coffee, so it's not a matter of if I can "stand" it or not, it's that, as I have said before, it stimulates my vertigo! So does dark chocolate. So if I consume these things at all it is only in very small amounts, unless I feel my vertigo has not been an issue for awhile, in which case, I'll relax those rules.

Our computer operating system has just gone down at work, so you guys are stuck with me for a little while whilst I'm allowed to google etc, until the system comes back up.
It's strange being on here when everyone else is (8:30am Melbourne Aust time)

Anne, I just wanted to say that if you really need a coffee, why don't you have it before you go to bed, and that way you are already lying down. The vertigo wont make you fall down :thumbsup:
You and I both know it doesn't work like that, but thought I would lighten your afternoon :hug1:

[annekat]

Yes, funny, Michelle... I actually know people who can drink coffee before bed and still sleep... I'm not one of them..... I think Deb is right that we need to get back on topic before Mr. Putin steps in..... hoping to hear something from Lori, the new member who I think started the thread.....

[Alias]

Hi Lori, sorry you are having to go through all this. Those first weeks/months after diagnosis can definitely be overwhelming. Trying to absorb information while adjusting to new medications and so on is really tough. Maybe you already posted something with your symptoms and how you came to be diagnosed, and what the extent of your disease is. For instance, do you have lung or kidney involvement, or is it limited to ears, nose, etc...or....? The prednisone is extremely annoying at the higher doses, no doubt about it. Being ravenous and sleepless for weeks at a time is no fun. As things start to calm down, your prednisone dose will probably be gradually lowered, or even eliminated depending on how you are doing. MTX is tolerated well by many people. The dosages we usually are prescribed for WG are similar, I think, to those given to patients with other rheumatoid issues. (Rather than heavier doses given in cancer treatment.) Your physician must think that your preexisting liver issue is not significant enough to preclude treatment with MTX, but it's sure a good question to bring up with your treatment team. As for self medicating with herbal teas and such, I would just make sure my doc thinks it can at least not cause more problems. FYI, I am almost exactly two years post diagnosis and have been in a pretty comfortable remission on MTX for over a year. Best wishes and good luck to you.