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babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 12/1/2006 9:59 PM (GMT -7)   
Well, these last couple weeks have been torture.  I was doing great with the pred and mtx for about 3-4weeks even when I caught a cold and then bronchitis which I am still dealing with (on week 3) then 2 weeks ago I started with muscle weakness in my thighs, lower back and shoulder actually it was more like total exhaustion of those muscle groups.  I had decreased the pred almost to 12.5mg (only did this for one day) but was on 15mg and doing pretty well for almost 2 weeks.  I called the rheummy and they said that the muscle issues could be from the pred or they could signal a potential flare.  Well, guess what.  I ended up in a bad flare last week and oddly the muscle issue just disappeared.  I actually ended up running a fever and the joints were on fire even joints I didn't think I had an issue with were hot, very hot and painful, couldn't walk again.  So, I called the docs again and they said to go back up to 20mg of pred and stay there until I see them again on the 13th. I am told that 20mg is a high dose and really wanted to be able to come down off of this, but can tell an amazing difference when I am at this dose.  I actually think better, function better, and have NO fatigue once it kicks in usually fully by the 2nd day.  But my head is clear.  Anyone else have this affect?  Does it mean anything?  Also, at what point would I know that the mtx is going to help?  I am at 15mg right now and 6 weeks will be on the 13th.  It sure was a let down to start hurting so badly out of the blue like that.  Oh yeah, they told me that even if I have a cold even without fever I am not to take the mtx... now with winter and all should I just give up the mtx altogether I am always sick especially in the winter time.
 
Let me know if this sounds familiar to you all.
 
Thank you
Theresa

babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 12/2/2006 9:34 PM (GMT -7)   
Is anyone there? I know I don't post much to others posts yet, but I am so new to this... can anyone respond?
dx: Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 600mg, Maxair, Advair 250/50, Diovan HCT 160mg/25mg QD, Synthroid .1mg QD, Women's One a Day,  Ultram PRN.
 
 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 12/2/2006 10:18 PM (GMT -7)   

hi bloo, sry no one has responded to you yet.  i know i am also not doing well these days and in the middle of a flare- because i dont take the prednisone anymore.  so in answer to your question yes 20 mg of ped verses 15 can make a world of difference- verses 0 mg.  i am sry you had a severe flare the past month coming down from the prednisone.  devil   it seems when our bodied come down from the pred the pain is almost amplified.  i know i had a hard time reducing my pred but i wanted to get off thestuff- my personal thing.  i regret it as i am in soo much pain but i see my fhuemmy i 1 week and i am hopeing to go on a biologic, so i dont want to go on and then off again so i am suffering without.  i can hardly walk today and am 10% dependent on my cane. 

anyhow i think that is what you were asking? keep on the 20 mg if you feel better on it and next time you see your rhuemmy talk to him about your conerns and alternates to pred?  elcamino has supported biologics openly to me and i hope tht will be an option that relieves the pain cuz it is all about the pain bloo! ugh devil   oh and talk about fatigue! skull

well bloo i hope i understand correct you are better now and maybe biologics are they way to go with mtx? i go the 11 th you the 13th i'll wish you luck and i am certain u will wish me the same heheheheheh   ((((((((((hugs )))))))))))) to u bloo sry no one responded sooner but we care some of us who post more frequently must not be on.... oh i lost my power sue to 68 mph winds 2 times in the last 24 hours! so that also has put me off line :-)

keep in touch  yalinda tongue


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/2/2006 11:56 PM (GMT -7)   

hi theresa,

wow, well i'm not familiar personally with MTX...so i would hate to put any info in on that one.

the pred? oy! i hear you. sad i want OFF OFF OFF!  but it does work & it does help.  it's hard because it seems when we try to come off of it...FLARE!!!!!!!!! or if a little decrease? FLARE!!!!!!!!!!! it sorta feels like it makes ya come dependent on the thang.

for me prednisone is the only thing that helps sorta control the RA joint pain...but i get rebound bone & ligament pain from the pred...plus badchest pain & a rapid heart beat that is wicked. can't stand it.

and yeah sure...once a person has a little relief from pain? your mind will be clear. and functioning better is a goal & desired effect of the steroid as is the same for nsaids & bios and tnf meds.  they are all meant to improve RA and autoimmune disease processes & symptoms & pain.

i'm up for 4 nite sin a row from prednisone insomnia...lol...so i can't say i get a clear mind from pred. but i am so happy that someone does!!! :-)

i hope some folks get back to you about the MTX...i'm sure they will.

takegood care.  erin


Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted Yesterday 3:27 AM (GMT -7)   
BabyBloo.......So sorry you are having a rough spot. I am on the MTX it can take a couple of months to work. I have been on it almost two months with little change so we just increased the dose. I was on 20 mg of prednisone and have reduced it to 2.5 over time. I had to go very slow. Maybe 2.5 mg every two months. I hope to be off soon. It seems to be about finding a balance. I'm so sorry you don't feel well. I had a flu shot two weeks ago and got a major flare. It has passed and I hope yours passes soon. Take care of yourself...............Harley Diva

Harley Diva
 
....RA, HPT,  drugs: Sulfasalazine, MTX, prednisone, bp meds


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted Yesterday 4:41 AM (GMT -7)   
Thank you so much for responding. I don't really have a support group around home or at work so I was desperate to talk to someone anyone that wouldn't call me a whiner. It's really difficult right now. Everytime I try to do something even if it isn't much like yesterday I went to the mall and then to go get a tree I end up hurting so badly that it is very upsetting to me. I want to do so much and I guess I can't right now or maybe I should just force myself since pain is a part of life. I just don't know. I can't just sit home and do nothing, I am a single mom ya know? I keep having these fleeting thoughts of leaving work, going on disability so that I can at least enjoy my time with my son. Maybe even temporary until the meds kick in? I don't know. Seems I work and once I do that my day is done and so is my boy's and I don't want it to be that way. Then with the pred I just keep watching the scale go up and up practically while shoving more food into my mouth. No self control. I haven't really gained too much yet while on it but I am gaining and let me tell you I don't need too. It gets pretty depressing.

Theresa
dx: Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 600mg, Maxair, Advair 250/50, Diovan HCT 160mg/25mg QD, Synthroid .1mg QD, Women's One a Day,  Ultram PRN.
 
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted Yesterday 5:56 AM (GMT -7)   
Hey Theresa,

I agree with Yalinda. Perhaps you need to talk to your rheumy about the biologics. Combining enbrel with the mtx made all the difference in the world to me. Either one alone is not nearly as effective as combining the two. I started on enbrel and then added mtx, but most people go the other way.

I hope you feel better soon.

Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted Yesterday 1:53 PM (GMT -7)   

hey theresa,

you really struck a chord with me.  you are so NOT ALONE in this.  it's the same for many many people; the way you are feeling.

that is really somethin'  & i really admire you for being a good, concerned parent & single mom...it surely doesn't make things easier i can imagine that.

i feel for ya about the whole "day" thing.  it is sad much of the times & it's very difficult to NOT get down about it.  i'm still waiting to shower!  eyes  many times that's the only "activity" i can complete in one given day.  if you feel that you are not able to work...then perhaps it is a good idea to start looking into SSDI or temporary dis.  i have been in the process of it all for almost 5 years now; that's not a pleasant or easy thing either.  i'm in an appeal state right now. but...i have to cover my butt as you know yourself.

we're here to listen, so anytime! there are so many great & understanding/caring people here.  sometimes it's the only thing that gets ya by...just hearing someone else that is so similar to yourself & learning how each person goes through things.

one day at a time.

sincerely,

erin


Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 

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