Re: questions re medication

April 6, 2008

Hi Marla, I got sick and wasn't able to read this before the neuro visit. Seems like every little thing turns to a big thing with this. I started with a cold and now its in my chest and sinuses and I feel horrible. the neurologist really ticked me off on Friday. He had lab results from March 13th and a bunch of them were abnormal and he didn't call me. He said it looks like you had a UTI back in march by your lab work, did you? I reminded him that I can't feel anything to do with my bladder so who would know? He is against methotrexate. He likes prednisone. I said I can't do it any longer or I will have no stomach or bones left. He was so clueless. I was so frustrated. Why can't I find a doctor that knows about this stuff?????????? I could just scream! Why don't they listen and why do they act like we're making it up? Who would want to be like this? I had a great life, job, etc. before NS. I definitely didn't choose this! He acted like I was just wanting

medicine I didn't need! He offered me ativan and sleeping pills and I declined. Now think about that! If I was just seeking drugs, would I pass up the ativan and halcion and ask for chemo???????? NOOOOOOOOOOOOOO!! What an idiot!! Sorry. Thanks for being a safe place I can be real! CathyMarla Bramer wrote: Hi Cathy, Yes my journey with Methotrexate, I was put on this drug about 4 years ago, I was able to wean off the Pred. after I started the Methotrexate, I was put on Plaquanil for

skin sarc, and it worked on the skin and the lungs, so that was a nice surprise, at that time it also helped with the neurosarc too, but about 6 months ago, the neuro came back, so the combination I am on is no longer working. But I had 4 good years, the skin is was up and down but it worse now then it's ever been. However not to discourage you, the Methotrexate along with the plaquanil worked very well on all my symptoms and I was able to go the Pred! Also you can get an injection instead of oral which I understand is easier on the liver, I take the pills once a week. Good luck at your Neuro visit, I will keep you in my prayers, Marla On Fri, Mar 28, 2008 at 5:01 PM, Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote: Hi Marla, I am glad you've been able to stay off of prednisone for 2 years. I am going to the neurologist a week from today. I want to tell him I want to stop taking prednisone and find out more about methotrexate. When I wean down on prednisone my cough and lung symptoms come back. Does methotrexate seem to help with the lungs or neuro symptoms? I figure it must because it seems like most people with sarc take it. The plaquanil helped a lot with the pain. I really really really want to stop prednisone and not take it again. I was thinking of asking him next week if I can stop prednisone and try methotrexate. I have to be careful with my liver since they found out I have that other disease too. I started taking milk thistle to help my liver. Right now my liver enzymes are fine I think. I had blood drawn again a few weeks ago and will get the results next week when I see the neurologist. Can you tell me more about your experiences with

methotrexate? Thanks!! Have a blessed day! CathyMarla Bramer <mebramer (AT) gmail (DOT) com> wrote: Hi Cathy, The round face goes away slowly when you are able to get of steroids, as it comes from the high doses of steroids you are taking, it took me awhile to get rid of it, but it's gone now, I am not on any steroids now and have been off for a few years, I like Tracie am on Plaquanil, Metotrexate, and with my NS flaring getting ready to add another drug to the list, but I really want to stay away from Prednisone if at all possible, I know what you mean about looking in the mirror, since my face is better it's easier, but I still have added weight, and that is hard for me, but again it is so true, God is good, we are here and able to be with our family. God BLess, Marl a On Wed, Mar 26, 2008 at 2:44 AM, Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote: Thank you! I will try all of that! I really appreciate all of your knowlege!!! I can't explain how much hope this group has given me. I felt so alone in the dark and scared before. Not that I am still not scared about the future, but I am not alone any more and i am not completely in the dark. Thank you soooooo much! Is there anything to get rid of this very round face from prednisone? I look in the mirror and hate what I see. I don't look anything like me. But...... I am alive and had another wonderful day with my 3 wonderful sons.... so oh well. I guess it doesn't matter how I look. They still love me and I am still here

thank God!! Thanks again! Cathytracie feldhaus <tiodaat (AT) att (DOT) net> wrote: The Internist that I used to work for always took 2Rolaids before he went running. He swore that it keptthe lactic acid from building up. Personally, I usethe MSM Powder before I try to do anything that mimicsexercise-- and then I eat a banana and get some extrafluids down (Gatorade works well to balance theelectroylytes) and that seems to help. One thing to do before you start out is to do somestretches where you raise up on your toes, hold it--and repeat 5 or 6 times to get those calf musclesstretched out-- also if you can use a wedge of wood,or open the cupboard door and put your toes on it--and keep the heel on the floor-- just holding it therefor a count of 30,

working up to a minute to 90seconds-- this helps those calf muscles to keep a bitmore flexible. START SLOW!!!!As far as the cold and body pain-- LAYER, LAYERLAYERS! Thermals under your pants, shirts, etc-- anda blanket to sit on and wrap up in-- so that you stayas warm as possible. A thermos of hot decaf tea workswell also-- Hope this helps,TracieNS Co-owner/moderator --- Cathy Borden <csamom3 (AT) yahoo (DOT) com> wrote:> Tracie,> Thanks for the info on lactic acid. Do you know if> there is anything we can do to clear the excess> lactic acid other than stay well hydrated? Yesterday> I went to my son's ball game an had to walk quite a> way (way further than I had walked for months) to> get to the ball diamond from the parking lot.> Surprise surprise, I forgot my cell phone in the

car> and had to walk back to get it because my little> sons were at their friends house. Of course my legs> kept stopping on me as I tried to walk, hurting and> the muscles were getting really tight. The game> lasted for almost 4 hours and the temp outside was> in the high 30s. I thought I was dressed warm enough> but I could barely get back to the car. My legs were> cramping and hurting so bad and really not wanting> to move. My hips and back were hurting a lot too.> Even after 2 pain pills I was awake off and on all> night because of pain and today had to go back to> using my walker. I suppose it was a combination of> so much walking and> the cold weather. I have to figure out how to deal> with this cold weather thing because I am not going> to miss his games just because it hurts. My kids are> the world to me. Does the cold do this to anyone>

else? Any suggestions on how to best deal with it?> Praying for painfree days filled with love and joy> for all of you!> Cathy> > tracie feldhaus <tiodaat2001 (AT) yahoo (DOT) com> wrote:> Marla,> I know I've talked about this-- but one thing I> learned from the dc is that when we exercise (for us> walk to the mailbox) or even try the grocery store> or the mall-- that the lactic acid that builds up in> our muscles isn't cleared out like it is in someone> healthy. We store all those toxins-- in our lymphs> and muscles, so the fatigue to them is so much more> intense.> Like you, I have had episodes (now more often) of> my legs wanting me to stop trying to hike the mall--> it's just too much. I also wonder how much of this> is due to the fact that if we are lung compromised> -- our

bodies are trying to keep the oxygen going to> our vital organs-- so it deprives it from the> extremities. I know this plays a huge part in the> neuropathy of our hands and feet-- and at least to> me, it stands to reason that it would be effecting> the strength and recovery from exercise (movement). > > How long has it been since you've had a lung> function test? Where's your DLCO drop to when you> do go out on what would be a normal excursion for> the rest of the family.> You and I both know this goes back to the same> bottom line as the Disabled Persons Parking Placard.> It's alot more "embarrassing" to those we're with--> as they don't even think we need it-- (denial) so> they fight these changes.> As for you--- you need to do what you can to keep> yourself as functional as possible. If this means> that you get a chair-- get a chair! and when

they> get pissy, run them over.....> > Love you,> Tracie> > > Re: questions re> medication> > > --- Marla Bramer <mebramer (AT) gmail (DOT) com> wrote:> > > Thanks Tracie, I am still looking in to all this,> > some days I think I really> > don't need this as I do OK, but on those days I> find> > I feel better because> > all I slept a lot that day, my family thinks it's> > crazy that I want a wheel> > chair, but I find I can't keep up with anyone, and>

I> > can't walk for very> > long, it's so hard to explain to them how I feel,> > the more I use my legs,> > the weaker they become and it's hard to explain> that> > weakness feeling. Well> > thanks for the information I really appreciate it!> > > Marla> > > > On Feb 11, 2008 12:47 AM, <tiodaat (AT) aol (DOT) com>> wrote:> > > > > *Marla, Humira and Enbrel are both injections> > you can give yourself at> > > home. So you don't have the facility fee for the> > infusion. I'll have to> > > check, but I think it was Enbrel that works like> > Remicade-- in that it> > > targets the TNF-a protein, without attacking the> > entire immune system-- so> > > it is selective. I know Stinson was on Enbrel> and> > felt better as far as the> >

> sarcoid-induced arthritis, but i know he became> so> > exhausted from the> > > lowered immune system that he discontinued it. *> > > *I'll let others give you their take on these--*> > > *huggs*> > > *Tracie*> > >> > > In a message dated 2/10/2008 12:29:40 P.M.> > Pacific Standard Time,> > > mebramer (AT) gmail (DOT) com writes:> > >> > > I have questions some of you might be able to> > answer, I am still> > > fighting the insurance company for Remicade, and> > because they have no regard> > > for the "person" my hearing isn't until 3/12,> well> > by then I may not be able> > > to walk at all, not that they care.> > > My questions, my husband said maybe we should go> > head and start medication> > > and pay for it ourselves? I

know some have had> > good results with Remicade> > > and some not.> > > How many are on, or had good results from> Humaria,> > another drug the doctor> > > is talking about?> > > how about enberal anyone tried this one. I'm not> > sure what to go with, if> > > we start Remicade and the insurance company> denies> > it, we cannot continue to> > > do it, just too expensive. But what about the> > other drugs, I have looked up> > > costs on them, and they are all expensive, but> can> > do at home and not in the> > > hospital?> > > Any information would be greatly appreciated!> God> > Bless, Marla> > >> > > --> > >> > >> > >> > >> > > ------------ --------- --------->

> > Who's never won? Biggest Grammy Award surprises> of> > all time on AOL> >> Music.<http://music. aol.com/grammys/ pictures/> never-won- a-grammy? NCID=aolcmp00300 000002548>> > > > > >> > > > > > > > -- > > Marla Bramer> > Independent Beauty Consultant> > Kay> > > > mbramer (AT) marykay (DOT) com> > www.marykay. com/mbramer> > > > ____________ _________ _________ _________ _________> _________ _> Never miss a thing. Make Yahoo your home page. > http://www.yahoo. com/r/hs> > > > > > > > > > > >

---------------------------------> Be a better friend, newshound, and know-it-all with> Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. -- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. -- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer

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April 6, 2008