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nona43
Regular Member


Date Joined Jul 2009
Total Posts : 42
   Posted 8/2/2009 9:15 PM (GMT -7)   
Hi all , as you know i have been having a hard time of it latley with the pain I went and had a cytoxan treatment tues and had a shot of steroids IV plus a shot in my hip that is supposed to last a month well... I am already having some pretty significant joint pain already I take pred every day I really cant take the NSAIDS cuz I already have cardiac disease and have to take plavix and asprin so the doc says both the cardio and the rhumey thats not a good option for me I have strong pain meds but to tell you the truth they dont work very well I am afraid I will end up in a wheelchair for good I really do have a good rhumey he hes tried everything ,plaqunil that I am still on methotrexate didnt work imuran didnt work cellcept didnt work so now we are doing cytoxan which I dont know how many have tried it but it is a debilitating drug the side effects are extremely unpleasant and remicade for my joints this treatment has been going on for about a year without much sucess I talked to my doc tues he kinda acts like he is at the end of his rope I keep having organ involvement even though i am so immunosuppressed what should I do? I love my doc people come from all over the state to see him do you think i am just a hard case?  I am at my wits end...........
                                                                                                                              nona
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
 
  Never Give Up!
                          nona


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/2/2009 9:35 PM (GMT -7)   
Nona,
Wow! I'm sorry you're not getting adequate relief. I "kind of" know how you feel. Not so much the pain, but at times my doc has been throwing every big gun immunosuppressant at me and i'm still having major, organ involving flares! So frustrating and then add to that your pain! I don't really have any advice to offer, I just wanted to say, i'll be praying for you. Someone will probably come along with some advice. Have they mentioned referring you to a pain management doc? Maybe that would be an option. HOpe you find some relief soon. Judy

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/3/2009 7:26 AM (GMT -7)   
Nona,

I am so sorry to hear you are hurting so bad. When I am in terrible joint pain, my muscles
tense up and I hurt even more. When this happens I take cyclobenzaprine(Flexeril), it is
a muscle relaxer. This med seems to take the edge off the pain. I also try relaxation
therapy by sitting on my Homemedics massage pad and listening to some good music.

Hoping you have pain free days ahead

Robin


 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/3/2009 11:00 AM (GMT -7)   
Hi Nona:
 
I'm sorry to hear that you're in such bad shape.  It's really a shame that your pain is so bad and your pain meds don't help much.  Sounds like your doctor is trying the best that he can.  I get the feeling that you really like him.  I know of a couple of members here who are taking arava to treat their lupus, maybe you could suggest it to him.  I didn't see if you've taken Rituxan either that's an option.
 
Nona, I want to say to you don't give up.  I like yourself have tried everything except for arava.  I'm currently on Remicade for my RA, and so far it doesn't seem to be working at all.  I like you have terrible pain and I'm on some pretty heavy duty drugs.  When I can't control my pain with oral meds my doctors admit me to the hospital and give them to me IV.  I've struggled with lupus for 23 yrs now and I can say I had some good years with remission, the past 8 years have been going down hill.  I like you have been on everything.  I was on Cytoxan for 1 year and I was very unlucky it helped my lupus I felt better that way, but I developed blood cancer - MDS.  MDS is known as "smoldering leukemia" and it will move into being full blown leukemia at some point. 
 
My lupus is out of control, my RA is flaring up and my Fibro is always hurting me.  Then on top of it I've got blood cancer, there are days I feel totally like why am I trying to stay alive, why do I allow myself to continue to suffer.  I don't have an answer really, except I have a child and I need to be there for her know matter what.  So I dig deep into my soul and say I'm gonna get through this, my doctors will eventually find something that works for me.  Even though like you I'm immuno suppressed I still keep having organ issues, and honestly my doctors have said we don't know what to do for you, they keep trying to make me comfortable.  Nona don't give up keep fighting, we'll all be here for you and if you have specific questions you can email me.  You're in my thoughts and prayers.  Keep fighting and keep hanging on.
 
Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


nona43
Regular Member


Date Joined Jul 2009
Total Posts : 42
   Posted 8/3/2009 11:49 AM (GMT -7)   
Hi thanx so much to all of you it really helps to know you understand what I am going through I wont give up I have two beautiful grandsons and a wonderful daughter to stick around for,its just that some days....... well you all know. thanx for the info barbara I will definatly ask my doc about those meds I too have to be hospitalized sometimes just to get the pain under control.I will keep plugging on until we find something that works . It is so wonderful to have you guys to vent to you folks are truly the ONLY people that honestly understand.thanx agian......nona
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
 
  Never Give Up!
                          nona

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