Hello, new to the forum.

[shegothipslikecinderella]

Hi- I'm Jasmine, I've just been diagnosed with WG. I have not got everything in line yet- haven't started treatment, don't have any good doctors, don't know up or down..... I'm really quite lost and in a lot of pain.
Previously I've been quite healthy, except for the genetic disorder von Willebrands, which has not interrupted normal life except for frequent nosebleeds and a general avoidance of surgery.
I have been married for 5 years and my husband and I have 2 children, Gabriel who is 3 and Violet who is almost 2. I'm a stay at home mom, a freelance writer, and up until I became ill, I was training to become a midwife. I like music (mostly punk), reading (sci-fi and comics sparked my love of books in general) and art, all the arts.
I am going to start searching around the forum, I am sure like any forum there is a lot of info to be found.
Any advice is welcomed on how to procure a decent doctor and where to find more information on well, everything.
Nice to "meet" you, I hope to get to know you better soon.
-Jasmine Rae

[coffeelover]

Jasmine,

I am so glad you found this sight. There are many people on here that can give you great advice. I am not sure how you were diagnosed, but I know people on this sight will tell you to find a doctor as soon as possible and one that can help you with a WEgs diagnosis.

Also you could check out the vasculitis foundations website for some references of places near you.

We are with you all the way. Just ask
Lisa Coffeelover

[shegothipslikecinderella]

Thank you, I'm glad as well. I was diagnosed by a rheumatologist who I was referred to by an urgent care doctor... I was never much of a doctor person, so finding a good one is hard for me. I've made appointments all around town, I have all my medical records too, the x-ray, urinalysis stuff, CT scan, etc. I am hoping to find a team within 2 weeks. In the meantime I have specialists I am seeing that the rheumatologist reffered me to, I don't like them, but they will have to do for now.

[Doug]

Perhaps Lisa can share her knowledge of doctors she's been going to (if she feels confident in them...) as a starter. Also, you are in the Land 'o Mayo, certainly a well known and respectable source of information on WG, but go first to the one Lisa mentioned, the Vasculitis Foundation.

Take some time to go through this site, just to read what others have gone through, what forum members wrote about their experiences with WG, and added to the general knowledge you need to have to deal with doctors, nurses, family, friends. There are other web sites posted throughout the forum that should be of help to you, too.

Like Lisa, I am glad you found this forum. The people have a very broad experience with the disease on whole, so there doubtless will be one or two who've experienced WG similarly to you. I hope so, at least. I didn't have any contacts with other Weggies until well after the critical part of my treatment was over. A couple of nurses and my boss at the time copied a little information off of the internet, and that was helpful, but not as complete as I needed, I now know.

Speaking of "need to know", the Vasculitis Foundation web site has a "Frequently Asked Questions" section directed at patients. I thought it was an excellent basic indoctrination for new patients. There's another on somewhere on this web site that I never can find, though it surely is right in open somewhere. It was put out by the St. James Hospital in Dublin (I think that's the hospital). It, too is an excellent guide. Perhaps Andrew can add a note to guide you (and me!) to it.

I also welcome you to the forum!

(p.s. pay particular attention to the comments about Prednisone and its effects on your weight, activity level)

[andrew]

Hi Jasmine, welcome! Sorry that you're having issues finding doctors. As Doug said, you're in the same state as the Mayo Clinic (Mayo Clinic medical information and tools for healthy living - MayoClinic.com (http://www.mayoclinic.com/)). Others here can recommend which of the docs there are the best. I hear a lot about Mayo and the great docs there.

Check in this thread for some links: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/59-links-wegeners-granulomatosis-resources.html

Here's what Doug is talking about I think: http://www.vasculitis.org/download/WG.pdf

[Sangye]

Hi Jasmine,
Happy to meet you. (Love your screen name!) I'm a chiropractor who specialized in pregnancy and pediatrics before I got sick. I worked with excellent midwives. I hope you can heal up and get back to that great profession.

I strongly encourage you to go to Mayo in Rochester ASAP. They specialize in Wegs, and you need that. Wegs is dangerous enough, but with VWD, if your lungs began to hemorrhage, it would be far more dangerous (not to mention difficult for a local doc to treat).

I went to Mayo in Arizona, and the procedures at the other locations seem to be the same, so I can help you if you like. (Arizona Mayo didn't specialize in Wegs, so now I go to Johns Hopkins in Baltimore.)

Call them (http://www.mayoclinic.org/rochester/) and say you have Wegs but haven't started treatment, you have no good docs, you have VWD, and you have toddlers. They'll assign you a Wegs specialist and get you in faster. If the appt is too far out, keep calling back daily (twice is okay) to ask about cancellations. They don't mind and there are many cancellations, since people come from around the world.

You are unfortunate to have Wegs but fortunate beyond belief to live so close to one of the best places on earth to treat Wegs.

[shegothipslikecinderella]

I am going to call the Mayo myself for sure- my husband did yesterday, I guess, but he forgot the vWD and stuff... I have friends in Rochester who I am visiting over the July 4th holiday, so I will definitely impose myself on the Mayo. It is a bit of a hike to Rochester, this coming from a Minneapolis-ite who is used to walking a block at the most to anywhere, lol. Definitely worth every mile though.
I hope I can get back to pursuing my career in midwifery, it is my passion. We midwives love the chiropractors, almost always the first answers to pregnancy complaints are, How's your nutrition? and Are you seeing a good chiropractor? :)
I did see an ophthalmologist today who seemed very knowledgeable and was exceedingly nice, which was a pleasant change of pace.
Oh- and the screen name is sort of my tag everywhere- I was well known in the childbirth advocacy ring because of it. It is a line from a Pixies song that I adopted during an 'empowering myself' phase. I am sure some interesting things pop up when you google it. lol.

[Sangye]

(We chiropractors love the midwives, too! Happy moms, dads and babies.:) My practice was in northern Arizona--perfect location for a cozy, family-based practice. It'll be pretty different to start up here in the suburbs of D.C.... Chiropractic out here has a poor reputation. I've only met a couple chiros here, and I'm sorry to say that they earned that bad reputation. :( )

Very glad to hear you're heading for Rochester! Don't sweat the distance-- your life and quality of life depends on having the best docs.

One thing you'll quickly learn about Wegs is that the Wegs specialists are much more skilled in using less toxic treatments and sorting out Wegs from collateral damage. Collateral damage can look exactly like active Wegs. Less experienced docs will often treat every symptom like Wegs, and you can wind up on the harsher drugs for longer periods. I've also noticed the Wegs docs are less likely to poo-poo my symptoms.

When I had non-Wegs docs, I had to stay on top of them to make sure they knew everything and didn't ignore or harm me. With the Wegs docs, I don't have to do that. They're always thinking 10 steps ahead of me. My attempts at micro-managing are *sigh* foiled again. :D

[Doug]

Hi Jasmine, welcome! Sorry that you're having issues finding doctors. As Doug said, you're in the same state as the Mayo Clinic (Mayo Clinic medical information and tools for healthy living - MayoClinic.com (http://www.mayoclinic.com/)). Others here can recommend which of the docs there are the best. I hear a lot about Mayo and the great docs there.

Check in this thread for some links: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/59-links-wegeners-granulomatosis-resources.html

Here's what Doug is talking about I think: http://www.vasculitis.org/download/WG.pdf


Yes, that's the one! I printed it out once and read it. Excellent information in it! :)

[coffeelover]

Jasmine,

I did not realize you were from Minneapolis area. We are only about 60 miles away from each other!
I see a rheumatologist who is quite schooled in WEGs, but she is not necessarily a WEGs specialist. Her name is Carolyn Bowles and she has her practice in Saint Peter, which is only about 60 miles from Minneapolis, as I already stated.
If you are worried about Rochester, maybe after you get your appt set up I could meet you there and walk through the process with you. I have family in the area and wouldn't mind the trip. I do not intend to access the Wegs specialists in Rochester Mayo as of now. I feel my rheumy has my disease under control for now. I am sure if things get worse over time, I will venture to Rochester for further treatment. My sister works as a research asst in Rochester and she has some pull if needed. Just let me know. We want you to get help asap. If you are interested in talking with my rheumy, I can help with that too. Just ask!
Lisa Coffeelover

[shegothipslikecinderella]

Well, I found an ophthalmologist I have high hopes for, he seems at the very least well read and we have good communication.
I made an appointment with a rheumatologist group that is experienced in vasculitis, I figure I am bound to find someone worth while there. It's the Park Niccolet clinic, in St. Louis Park.
I got a reccomendation for a lung and kidney doc too- we'll see how this goes.
I had a CT of my kidneys, it showed no damage. I have less blood and no protein in my urine- I think that is because of my diet changes (vegetarian, mostly organic) and drinking a ton of water...
My eyes are already looking better after 1 day- eye dr. has me on 80 mg prednisone for Scleritis.
I called the Mayo- found the docs I'd see if I went there. My insurance won't cover them under "any curcumstances" but, I've gotten around them before, I am sure I can do it again if necessary. (I got them to fully cover my homebirth) It's all in the coding.

[coffeelover]

sounds like you are on top of things. Good work!
lisa

[shegothipslikecinderella]

Thanks! I like to think I can attack this with the same aggressiveness and vigor I attacked previous problems I encountered... I can be a little controlling and OCD at times. I like to look at it as a positive trait, even though, when I crash I crash hard...

[Jack]

Great attitude! Keep the fighting spirit. ;)

Trouble is that after fighting everything thrown at me for 25 years, I can feel myself losing energy. :(

[andrew]

Thanks! I like to think I can attack this with the same aggressiveness and vigor I attacked previous problems I encountered... I can be a little controlling and OCD at times. I like to look at it as a positive trait, even though, when I crash I crash hard...

Well if you're going to crash, you may as well do it properly. That's my motto :D

[Sangye]

You probably already know this, but just in case : One way to get your insurance to cover Mayo is to have your local docs write letters confirming that you require Wegs specialists--not just docs that have treated Wegs at times. It's work do it, and it requires your local docs to participate, but if you frame it right to them (ie, with special emphasis on being a mom of toddlers who's trying to stay alive for them) they'll do it.

My therapist and I were just talking today about the difference between fighting and being assertive. Fighting is exhausting, while being assertive is actually empowering and strengthening. I've been working with this a lot lately, and I'm finding a whole new world opening up. I can deal with difficult people/situations without it knocking me down like before. And I'm getting a lot more cooperation than I did when I came in with my guns loaded! :D

[Terri]

Sounds like you are well under way for what needs to be done. Just don't give up.
A few statements back, Prednisone was mentioned.
I heard somewhere that you shouldn't take Prednisone with-in so many hrs of any type of calcium including milk, yogurt, e.t.c. Is that true? And should the Metetrexate be taken at one time(I take 4) or spread throughout the day?
I've been having some issues as of late and I can't figure out what the problem is. I'm starting to taper down with the Pred and I switched from Imuran to Metetrexate. For about 2 weeks I was so hyper I felt like super woman but the past few days things are catching up with me and I barely have the energy to get out of bed. I have to really concentrate on what I need to do to get anything done. Mentally, I'm an emotional wreck and cry for periods just because a certain thought came to mind. I'm coping ok because I've trained myself to SNAP out of it, but it is just so frustrating!
And that's another thing. If I'm doing something, whether it be dishes, making dinner, anything, I sweat so bad my hair is soaking wet and I feel like I have to fight to do the simplist task. I can't remember it being like this before when I was on the higher dose.:eek:
Any words of wisdom?

[Sangye]

Terri, those are the effects of pred. You don't realize what it's doing to the adrenal glands (and therefore your entire hormone system) while you're on the higher doses because it makes you feel stronger than you are. But all the while, it's weakening the adrenals and messing with the general hormone balance. That's why it's so hard to explain to people on higher doses to take it easy! You can't. Your mind and body won't let you.

So now you are experiencing the pred fallout-- depression, difficulty concentrating (part of depression,actually), emotions that are hard to reign in. It's chemical. You may need an antidepressant or a mood stabilizer. They don't perk you up, they restore the chemical balance in your brain. I'm not big on drugs--especially antidepressants-- but when you add pred to the body, it's nearly impossible to maintain a proper balance of brain chemicals. Many people suffer needlessly, trying to tough it out while the body finds its balance again. I once spoke with a JHU neuropsychiatrist about the effects of pred on the brain. He said without meds, it can take years to restore the balance once you are off pred. Imagine how hard it is while you're still on it!

[Luce]

Those are classic side effects of our little friend pred. I tapered from 60mg all the way down to 10mg, only to flare and have to be put back up at 30mg. I'm back to 10mg and although I think I've got the mental issues under control, I'm still far more weepy than I used to be and have occasional manic episodes where I'm bursting with energy.
I still get the ridiculous sweating but the trigger for that lessened as I tapered - it used to be as soon as I started doing anything physical like loading the washing machine or climbing a flight of stairs - now it's only when I'm in the gym but is still far more than a healthy non steriodic person sweats.

At least it doesn't affect my appetite at 10mg and some of the face and back puffiness has reduced, with the switch to cellcept next week I'm hoping I can get right off the pred eventually.

[Terri]

I think I knew it was the Pred causing the problem but didn't remember this before when I was on the higher dose.
Although before I wasn't working and sorta layed around the house for 8 months. I guess that could make a difference. I have more on my mind with work and now I have a garden and yard work I think has to be just PERFECT.:rolleyes: Everything seems to fall into place somehow and I am so glad for that.
I do take xanax and have for the past 15 yrs for anxiety. I have myself down to 1/2 0f 0.25 daily and maybe I need to up that abit.
I don't know what I would do without this forum. It is so wonderful to talk to people that know what you are going through.
Awhile back, I mentioned about my brother that passed away in Nov. from cancer. As long as he was able, he would call me everyday to see how I was doing. I have 3 more brothers and 4 sisters and only one other sister takes the time to call or visit with me. Isn't that a bummer?
OK, I shouldn't have went there:( so now I brought on the tears.
When I get upset, I write my feelings down.I wrote this yesterday....

Family defined: a mother, father, and their children
a group of people related to each other
a large group of related things
Related defined: belonging to the same family
having something in common
Does it take a stranger to care?
We are all so busy with life, we forget about the lives that are part of us.
2 seconds to care and for that an eternity of feeling good.
Why is it so difficult?
Please let someone know today that they are loved and worthy of the breath God gave them. We are all miracles of life and of the same family.

Ok. I'm done. Thanks for listening and thanks for being there! I love you all!

[jola57]

Hi Terri, life is funny when all is well, the tread we are on seems to make it impossible to be human. Our daily routines take so much time that anything beyond seems impossible. i know my self that even now I just don't seem to have the will to call or stay in touch with family or friends even when I know how important it is. Other times I just want to be alone with my thoughts and read and just don't fee like calling. I hope you have peace and comfort. Our loved ones just do not understand that even just a 30 second call to see how we are doing might be all we need to feel that they care.

[Sangye]

I've always been one of those "I can handle it" kinda gals. So being in the position of needing help has been a big adjustment for me. I didn't realize that during all those years of doing everything myself, I never developed the skills of making my needs known. I thought that was being needy. I also never realized how my ultra-independence made me appear strong to others, whether or not I actually was.

Once I got sick, a lot of people close to me naturally thought I didn't need help-- I'd always handled it before and I still wasn't asking. I thought it was totally obvious that I needed help, and inwardly judged them for being insensitive, heartless, whatever. It was a vicious cycle, because labeling them like that made me even less willing to ask them for help, which made them less likely to offer it! I thought, "Why should I stick my neck out only to be rejected?"

It took a few years to learn how to say, "I need help" and to trust that I could handle it whether they said, "Sure" or "I don't care." It's a work in progress-- not making my needs known is a mighty big habit of mine.

I don't know if this applies to anyone else on here, but it's sure helped me. :)

[Sangye]

Oh, I forgot : Terri, I know nothing about xanax. Have you spoken with your prescribing doc to let him/her know you're on pred and what you're experiencing? Might be a simple fix!

[Jack]

Becoming less able or dependent on others is something we all have to come to terms with to some degree. In my own case, this has become a progressive condition and has recently involved some home truths that I would have preferred not to confront. The major one is the fact that I would find it very difficult to manage without the support of my wife and family. I expect I would get by somehow, but shopping and generally looking after myself and the house would be very difficult indeed. I have also been a keen motorcycle enthusiast in the past, but it occurred to me the other day that I would never ride one again. I don't have the strength or stamina required and my bones would not stand up to a fall. :(

Sorry for the slightly off topic ramble:rolleyes:. I've just read it through and almost deleted it. Just having a moment of feeling sorry for myself. :o

[Sangye]

Jack, it's not a ramble. Please don't apologize. I'm sad that you're having to say "Goodbye" to something you love so much.

Maybe there's a "Hello" waiting somewhere down the road.

[Luce]

Jack - so sorry you've lost something you enjoyed doing so much.

God I miss smoking, I know it's dreadful and was only killing me anyway but I would much have preferred to make my own decision to quit instead of WG making the choice for me. I feel like I've lost a bit of my identity...

[Jack]

Thanks for your understanding, I feel better already. :)

I know what you mean about smoking Luce. I gave up 16 years ago, but still find myself missing it. :eek:

[Doug]

[quote=shegothipslikecinderella;3091]I had a CT of my kidneys, it showed no damage. I have less blood and no protein in my urine- I think that is because of my diet changes (vegetarian, mostly organic) and drinking a ton of water...=quote]

My pulmonologist only has one kidney joke: "Kidneys like a wet environment." He has a very, very dry sense of humor, so don't feel bad if it sails over your head. Part of the joke is his deadpan delivery, with a hint of a smile. (Yes, it is his idea of a joke!):confused:

[Doug]

Becoming less able or dependent on others is something we all have to come to terms with to some degree. In my own case, this has become a progressive condition and has recently involved some home truths that I would have preferred not to confront. The major one is the fact that I would find it very difficult to manage without the support of my wife and family. I expect I would get by somehow, but shopping and generally looking after myself and the house would be very difficult indeed. I have also been a keen motorcycle enthusiast in the past, but it occurred to me the other day that I would never ride one again. I don't have the strength or stamina required and my bones would not stand up to a fall. :(

Sorry for the slightly off topic ramble:rolleyes:. I've just read it through and almost deleted it. Just having a moment of feeling sorry for myself. :o

Jack- Ramble on. We all deal with the same recognition of limitations from time to time. You've been in this for an unimaginable length of time, have endured so much more than most of us that you get free pass to have a moment from time to time. God bless! :) We are your sisters and brothers.

[Doug]

Thanks for your understanding, I feel better already. :)

I know what you mean about smoking Luce. I gave up 16 years ago, but still find myself missing it. :eek:

I took my last toke at 3:15 AM (yes, I noted the time!), December 1, 1989. I quit cold turkey, and had amazingly few withdrawal issues for a heavy smoker (for almost 30 years). About two, three weeks into the process I had a dream about smoking in bed. In the dream, I fell asleep, and the cigarette fell onto the floor amidst combustibles. I woke up and...

1. rolled over and went back to sleep, it was only a dream,
2. got out of bed and tried to find the lighted cigarette under the bed; I had to find it before there was a fire,
3. same as 2, only I hoped to find the cigarette so I could finish smoking it.

If you guessed No. 3., you got it right! You all are dead right: once a smoker, you are a smoker for life, even if you don't put another one in your mouth and light it.

[Doug]

I've always been one of those "I can handle it" kinda gals. So being in the position of needing help has been a big adjustment for me. I didn't realize that during all those years of doing everything myself, I never developed the skills of making my needs known. I thought that was being needy. I also never realized how my ultra-independence made me appear strong to others, whether or not I actually was.

Once I got sick, a lot of people close to me naturally thought I didn't need help-- I'd always handled it before and I still wasn't asking. I thought it was totally obvious that I needed help, and inwardly judged them for being insensitive, heartless, whatever. It was a vicious cycle, because labeling them like that made me even less willing to ask them for help, which made them less likely to offer it! I thought, "Why should I stick my neck out only to be rejected?"

It took a few years to learn how to say, "I need help" and to trust that I could handle it whether they said, "Sure" or "I don't care." It's a work in progress-- not making my needs known is a mighty big habit of mine.

I don't know if this applies to anyone else on here, but it's sure helped me. :)

Absolutely! Because I was a caregiver for my mother and father for so many years, I fell into the trap of being Super Kid: I had to be to handle their needs! My needs were secondary, unimportant because I could handle anything. WG turned me around. I'd go on about how, but we are sisters and brothers on this site: we understand these things from shared experience. For thick-headed people like me, it is an amazing and humbling thing to be able to acknowledge there are times I need help.

[crackers]

jack feeling sorry for yourself is part of having this damn disease.for me it's something as mundane as taking the dogs for a walk.we take our 1 year old german shepherd to training on a sunday and all i can do is sit and watch while my wife does what i've give anything to do.i'm sure a lot of us on here have different reasons to feel sorry for ourselves.
john.

[Doug]

At one point, it was recognition that I didn't have either the strength or the lungs to rake fall leaves, one of my favorite activities. When that happened, spring of 2004 (I was too sick to rake them in fall 2003), I was glad that my neighbor and her daughter and son volunteered to rake leaves for me, but I felt still like someone just told me I'd never enjoy this activity again. I hope that we always can share hopeful experiences with each other so that the black moods turn greyish, at least! On the other hand, I think the bad moods need to work themselves through, for purposes of self-knowledge, for purposes of reorganizing our thoughts and lives around new-found insights, and just to get the dang things out in open.

[Sangye]

I was such an outdoor person before. Strong as an ox, too. Lots of endurance and I enjoyed hard physical work. It's truly painful to watch people exercise or go for a walk (even a stroll!). Stand around for longer than 5 minutes. Go on a bike ride. Sheer pain to just watch, especially when they don't realize what they've got. With summer upon us, people are outside having fun everywhere I look. Lately I've tried to rejoice in the fact that they're having such a good time. It's hard to do--I'm so full of envy-- but I usually feel better if I really get into it. After all, someone should be enjoying the beautiful day, or that great bike trail.

[Jack]

9 o'clock in the morning and I've just about got myself ready for the day. I started at around 7. I'm having a late start because my wife and youngest daughter have gone to Greece for a week so the time is my own.

I have four "jobs" to do today and I'm sitting here trying to work out which ones I can manage. Not all of them, that's for sure! Although I'm tempted to try. :rolleyes:

Think I'll cut the hedge (electric shears). That will stretch me to my limit. Then I'll see if I can do something smaller this after noon.

These are the sort of choices I make every day, whereas I used to not stop untill everything was finished.

[coffeelover]

Jack,
I too have given up some fo the very things I love. I have tryed to replace some of them with others (such as my guitar lessons) so that has been somewhat of a help.
I, like Sangye have always "handled" things without help. (I hated to appear weak) But when given the tracheal stenosis diagnosis and having to have 4 surgeries and looking like I did.....I reached out and begged for help. Most everyone was quite responsive (at least at first) and it helped considerably. throughout the 7 1/2 months with the trach, some kept in constant contact, some occasional and some "abandoned" me. But, those that stuck with me were a great help and I am glad I reached out to ask for the help.
Now, however, with the trach out, I believe I will be abandoned even more as they believe I am "cured". ha ha....I only wish! Time will tell.
This disease has done one thing good for me. It has made me re evaluate what is really important in my life. For example, I work with family and that is not always easy for those of you who know. The last few days I have been angered by some behaviors of my family members and have been giving my next step alot of thought. I am leaning towards the...maybe this is not what I need to do at this stage of my life phase...but still in the thought process. $$$ is nice, but not the answer to all. Family is great, but distance is OK too sometime, and taking the time to stop and smell the roses or play the guitar as the case may be is just what the doctor ordered.
Still in contemplation and still have WEGS.
Coffeelover

[Luce]

I understand Lisa, I really do. Chin up girl!

Yeah, I still have Wegs too :(

[Terri]

I was just reading over the posts on this thread.
We started out welcoming Jasmine, went into meds and that dang gum Pred causes problems no matter what huh?
My original question was should you take Pred with-in a certain amount of time as calcium? and is it ok to take 4 Methetrexate at once or should I spread it out through the day?:eek: Instead, I seemed to depress everyone because that is how I was at the time.
Today, I had a pretty good day once I got going.( around noon)
But that's ok. I know there will be more.
Oh, Sangye, I spoke to my Dr. about the Xanax and she told me to double it. I am sure that has helped me too.She also asked me to try and tolerate what I have been going through as long as I am not feeling suicidal. I told her so far I know when to snap myself out of it.

[Sangye]

Terri, don't worry about depressing us. It's normal for (all of us) to get really sad over something and then pop ourselves out of it with some joking around.

Pred shouldn't interact with your calcium. Magnesium interferes with absorption of most drugs, so if your calcium supplement has magnesium in it, just take it 1 hour before other meds or 2-3 hrs after them.

I have no idea about the methotrexate. When I was on it, I did one injection a week. Someone on here should know. What did your doc tell you to do?

I'm glad to hear about the xanax. That should make a huge difference for you. Do you have a therapist also? I've found it to be particularly helpful as I go through Wegs.

[jola57]

Terri, the only time calcium interferes is when you take medication for bone loss such as Actonel. Then you shoul not take calcium on the same day as the Actonel. I am starting Methotrexate and my doc told me to take some moring and some at night, but since I have not started i can't tell you more.

[Derek]

Hi Terry

I take Methotrexate weekly and I found it upset mt stomach badly. I used to take it at night with my other meds. My doctor said that if I could not tolorate it orally then I would have to inject it. With trial and error I now have found a way that suits me. I take them at midday with a large meal and with know other meds. Stomach seems to be ok most of the time. I am glad that it works this way, for now as I did not fancy injecting the methotrexate.

Derek:)

[coffeelover]

I take MXT and I take 6 pills with a good meal one day a week. I have just a slight stomach upset sometimes, that goes away rather quickly.

I have a friend who takes it for rheumatoid ARthritis and he has to take his 6 pills at various times throughout the day as he does suffer from stomach problems.

I found that if I eat a good, solid, large meal I do not suffer from stomach problems after taking my 6 pills. If I had to space my pills out throughout the day, I would probably forget half of them, so taking them at once works best for me. I am usually home on Sunday evenings and have the time to make a decent meal so that is my choice of days to take these lovely pills.

Good luck
Lisa

[mucjud13]

Hi , I have been taking METHATREXATE for 5 years now 0.8 inj weekly. The pills did made me sick and were not as affective as liquid inj.
I had a spell with no insurance and had to go back on pills and got worse again no flare up but infections in my nose,snoreness there too. When I finnaly got hooked up with VA back on inject. no flare -ups until Breast Surgery.
But Methatrexate appears to be a good maintaining agent and no hair loss.
Judi