User Tag List

Likes Likes:  0
Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 22

Thread: * Hello from Europe :) *

  1. #11
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Wegetarian, you still might be able to have a beer or two once in awhile, even though you are told not to.... quite a few on here who take MTX have confided that they do indulge in a drink here and there, maybe a couple of times a month. If your docs are checking your liver functions, or levels of whatever is they check in regard to that, and nothing suspicious comes up, you should be OK. Just don't overdo it.

    I agree with Michelle that 5mg. is a very small dose of MTX to start with, and probably a sub-therapeutic one. Especially if, as you say, you are a big guy! I would not hesitate to suggest, based on what you've heard on this wonderful forum, that maybe you start with 10 or even 15mg. I am a fairly small woman who is now on MTX after having been on CTX for some time (which you probably don't need). I started at 10mg MTX and did have some side effects, mainly a little nausea and fatigue, but took my weekly dose on a day I didn't have to go anywhere. It wasn't terrible, and I got used to it. I did flare on that low dose and am now taking 15mg./week, which is still on the low side but seems about right for me in my maintenance stage. If I was more acutely ill, I'd think it should be a little higher. I'm down to 10mg pred/day and still on Bactrim DS 3X/wk. I imagine I could start tapering the pred a bit, but I probably had a more severe case than you, and it doesn't bother me much, so I'm in no hurry.

    I'm glad you had a fun evening drinking! It's normal for you to be fatigued, but it sounds like you are doing well enough that there will time and energy for more fun times in the near future. I would go ahead and get some hand sanitizer, though, as you can't be too careful about picking up weird bugs out there in the world.
    Anne, dx'ed April 2011

  2. #12
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hey Wegetarian,

    Anne is right in that an occasional drink probably won't hurt you. I have a beer or glass of wine once every six weeks or so. I really enjoy a cold beer and have found several good non-alcoholic beers including Kaliber, Bitburger Drive, St Pauli NA, Buckler, and Clausthaler.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  3. #13
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Who says men can't wear scarves??

    It winter over here and many men wear a black scarf to and from the office......but I guess Summer would look a bit silly.
    Look silly or be protected - not much of a decision really.

    Certainly the gloves will help and especially the hand sanitiser if you are continually touching your face.

    With the alcohol - most doc's understand that you will have a drink or two.
    As Anne said, they will check you liver results and will be able to tell you if the alcohol is having an affect at all.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  4. #14
    Join Date
    May 2013
    Location
    Australia- Northern N.S.W
    Posts
    171
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Wegetarian, I am glad you found this site, it's the best informative source you will find. Every person has a different story to tell, its a bit like a unlucky dip, you get 10 or 20 health problems, put them in a bucket, and draw out several problems from the bucket, and that is what you have. You then have to draw out the severity, of what you have, and then throw in the side effects of what you are taking, and then try to manage work, family and life in general. After you have battled through all that, you can relax a little, smell the roses and start to enjoy a bit of normality ( maybe a couple of beers). It has taken me almost 8 months ( and I am one of the lucky ones) to get to where I am now, I hope to be off prednislone mid September, and will stay on azathiaprine for a further 18 months. I had my first beer 2 weeks ago (since January 2013), tasted good, and last weekend I had 4 beers (tasted even better). I am still very cautious, about drinking, as I don't want to go backwards, as my health is paramount. My advise is to get on top of it first, work out a plan to get back to as close as you can to the health you enjoyed, before your health declined, and then, Slowly, start to regain the normality of life again. I take great care to stay away from people that are unhealthy, hand hygiene is paramount, if you want to stay healthy.

    Ps Read read all the posts on this site, the more you know, the better you will feel.

    Regards Woz.........

  5. #15
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by mishb View Post


    Certainly the gloves will help and especially the hand sanitiser if you are continually touching your face.
    I'm using handkerchief when I'm in public places and need to touch my face.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  6. #16
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    I think the hand sanitizer must be helping me a lot, because I do spend time in public, handle money, and touch my face, and I've only gotten a cold once in the two years and four months since dx. That cold did lead to a minor flare, so do be careful.
    Anne, dx'ed April 2011

  7. #17
    Join Date
    Aug 2013
    Location
    A pale blue dot.
    Posts
    499
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I guess my problem is that I'd like to get drunk as a skunk. Its not something I frequently do, but a few times a year it can be so much fun with the right people. I suppose I'll settle for a good India Pale Ale though. I mean I so rarely drink much anyway that its not a problem per se. I guess its more about the restrictions. Like not being allowed or physically able to do the things you used to love. I have some really fantastic cigars too which I was going to smoke this summer, but my doctor also advised me not to do that.

    Quote Originally Posted by woz View Post
    I am still very cautious, about drinking, as I don't want to go backwards, as my health is paramount. My advise is to get on top of it first, work out a plan to get back to as close as you can to the health you enjoyed, before your health declined, and then, Slowly, start to regain the normality of life again. I take great care to stay away from people that are unhealthy, hand hygiene is paramount, if you want to stay healthy.
    Was this in reference to alchohol or to life in general? Since I'm feeling mostly fine when you discount the fatigue, and was planning on trying to see many friends in the evenings. Probably trying to limit myself to one night out per week and getting home before midnight. I'm just worried about over doing it since I have a difficult time estimating my own strength. As an example doing some chores that I wouldn't have considered draining can make me feel completely exhausted for the remainder of the day. In it self I don't think that would be a problem as I can usually rest when needed, but if it has an adverse effect to the healing process then it might be another issue.

    I'm also completely out of this flaring thing. I read some posts about it, but since my only symptom was the nose so don't know if I just have to trust the lab results and perhaps ask around if I notice something strange.

    About the medications. I discussed with the doctor and she said the low dosage is fine. We'll be increasing it weekly anyway, so it will just be 5mg for today and then next week I'll bump it up to 10. I'll be taking the vitamins tomorrow and at a later day something to help the bones. Have to say I'm not too keen on taking so many pills, but I ordered once of those weekly pill-boxes that old ladies use so I could sort out them easier so I don't forget anything.

    Forgot to buy the hand sanitizer again. Will try tomorrow.

    I also don't feel as grouchy as I did a few days ago. Perhaps its the lower dosage of cortison but more than likely I think its knowing more about the medication and my future. I was a bit annoyed today at the hospital though, had to wait for some papers and asked if I could sit since I try to conserve my strength whenever possible - one nurse came and said to me that I'm not allowed to sit there as it was a bit of an office area and I should go to the coridor. The friendlier nurse seemed surprised and said we have unfinished business and its fine that I wait there. Well I immediately went to sit straight across the evil nurses' cubicle so she had to watch me sit there all the while she worked
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  8. #18
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    I can understand your concern about the flaring thing. In my case, I can pinpoint a couple of things that could have caused it. One was that I got a mild cold, but it took a few weeks for me to stop coughing, and then the coughing started to feel a lot like Wegs coughing, and that it had increased from before I got the cold. The other thing was that my doc had put me on 10mg. methotrexate after taking me off CTX, and I'd been on it at that dose for probably 3 months. When I flared, he put me on 15mg. which is where I've been ever since. So I'm not sure if it was the cold or the low MTX dose or both that caused the flare. In any case, it seemed to take a few months to develop. I remember mentioning it to my doc and him thinking I was fine and not testing me. A couple of months later, I was really pretty sure it was a flare because I'd started having night sweats, which I hadn't had for a long time. So if there's some hallmark early symptom like that which you observe to be happening again, or if your standard Wegs symptoms seem to suddenly or gradually get a lot worse, you might be having a flare. And yes, with the night sweats my doc was convinced to test me, which I was due for anyway, and yes, my inflammation level, measured by SED rate, had shot up. Not to anywhere near the amount at dx, but considerably out of range of what is normal. I hope some of this helps. And if you have a flare as moderate as mine was, it will likely be remedied by an adjustment in meds.

    If they are increasing your MTX by 5mg. a week to get to your full dose, that sounds reasonable to me. Maybe it will give you a chance to get used to the side effects more easily.
    Anne, dx'ed April 2011

  9. #19
    Join Date
    Aug 2013
    Location
    A pale blue dot.
    Posts
    499
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Its just that besides the completely clogged nose with pink snot I didn't really consider myself having any symptoms. The fever was probably due to the two bacteria infections I had and I only developed the cough once I was in the hospital so unsure what my symptoms would be. Then again I think I can ask this great forum for advice if I do suspect something. Its just like woz suggested that I get one of 20 symptoms I suppose... so tough to know. Well, no need to worry about it now since I'm just starting anyway. I think I'll be a bit wiser in a few months when me might ween of the meds more and I've had a chance to have meeting with a rheumy or so. No need to worry in advance..

    Quote Originally Posted by annekat View Post
    If they are increasing your MTX by 5mg. a week to get to your full dose, that sounds reasonable to me. Maybe it will give you a chance to get used to the side effects more easily.
    Yes, I think that's the reason. I started with the 5mg yesterday and didn't notice anything. I guess that's a good thing since I was a bit worried about nausea as I've heard its a very common side effect. I do have a slightly sore throat, maybe time to grab a sweater. Next week we'll double it to 10mg and then continue with the 5mg increases until we reach 25mg if I remember correctly. Of course it will take some time, so I'm sure we'll be able to adjust if needed. From what I discussed it should take about 6 weeks to see effects and hopefully I should have more energy then. I guess it takes a few months for full effect though.

    I also discussed that I will move my med day to Thursday instead of Friday. I have no desire to feel nauseous on Fridays (besides I have a party to attend to next Friday ).
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  10. #20
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Just remember with the MTX and the fact that you like touching your face - always wash your hands after handling the MTX.
    DO NOT touch your face if you have not washed the chemo of your fingers/hands first - and as my rhuemy told me - DO NOT touch your eyes after handling MTX.

    I'm not prepared to find out why - just thought I would pass this on
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

Page 2 of 3 FirstFirst 123 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •