Hi, I'm a RA Newbie

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Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/20/2006 7:51 PM (GMT -7)   
 
Hello everyone,
 
I was just diagnosed with RA last Wednesday. sad I am still at the shocked, confused, scared, and angry stage. It all hit me very quickly. For the last 4 weeks or so, i have gradually had swelling of my joints. First my hands, then my feet, then my knees, then my elbows etc... now i have it in every single joint in my body. My hands are curled up like claws 24/7 now. I am already about 70 percent completely disabled sad . Dr. has put me on MTX 25mg once a week. And 7.5 Vicodens 4 times a day.
 
I am trying to get myself mentally up for this long journey i have ahead of me. I just turned age of 33. Married with a 10 year old daughter. Hubby has been wonderful, helping me get around, washing my hair etc...doing the house work for me.
 
Hope to get to know you all.
 
Morticia32

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 2/20/2006 10:34 PM (GMT -7)   
Morticia Hi and welcome to HW.I'am truley sorry to hear that you have RA,while I understand your concern's I have Ra as well it it is not a fun disease to live with that is for sure.I do have some question's if you are up to answering them.You say you are on Methotrexate are you taking it by pai form are you taking it by shot form?I take the shot form because my Dad started out on the pill form and it would make him severley sick for about two day's so I would recommend the shot form if you are not all ready takeing it.There are a lot less side effect's with the pill.There are other med's that you may want to ask you Rheumy about and two of them are Humira,Emberel and there are as well Rimecade that you may want to ask about if you feel the metho is not helping but keep in mind that some med's take a little while to get into your system for you to notice any different's.
Thanks
Curley......
a.k.a.Mela...........


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/20/2006 11:04 PM (GMT -7)   
Hi Morticia. i just wanted to pop in & say welcome to HW forum. Take care & I hope you get some relief soon. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/20/2006 11:16 PM (GMT -7)   
Thank you for your replys
 
As far as the MTX goes, DR. put me on pill form, i had my first ones on Friday and so far so good I didnt get sick from it. My liver is a little bit sore, he told me that might happen because its very hard on the liver. DR. wanted to put me right into hard meds right away to try and slow the progression down. I'm praying it will work, to the point where i can at least sleep at night and move around in the days. I sleep about 2 hours, then im up and down all night long. The pain at night is brutle, and that with Vicodens. Specially in my legs and feet at night. My knees lockup in bed and i can't move. If i lay on my back like a board, i can't move either. Nothing helps, so i just get up and try to watch tv or surf the net.
 
This sucks, and to think its gonna be lifetime is really hard to deal with.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/21/2006 6:31 AM (GMT -7)   
Hey Morticia - welcome to healing well... This is a very hard thing to go through, I completely understand, as do a lot of people on this forum. We have all been in each other's shoes. I am 32 and am having a hard time dealing with all this too... I was diagnosed last year, and up until last week, I managed just fine, but for some reason, I'm not liking the cards I have been dealt. Hang in there Morticia, this is a great group of people and you can find much needed support and help here... I hope you continue to post with us, and we'll do our best to help you through these tough times... best wishes to you - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/21/2006 8:36 PM (GMT -7)   
dear Morticia,
 
wow, what a fesh case huh?  last week? wow.  whe i was told i had RA, at age 16, the docs told me to ignore it! and i did! for 4 years!  that it would probably lay dormant & not get bad till i was old.  NOTHING COULD BE MORE THE OPPOSITE!  so i know how you feel with being young yet.  at age 19 the RA got very bad.  i'm 24 now and it's disabling.
 
so...my sincere advise would be to stick with the hard meds!  it is proven and shown that when caught and TREATED early with MTX and especially with the TNF meds like Enbrel and Humira....the destruction caused from RA is slowed better than with mono therapy alone.
 
it's good you're on pain management.  you need it.
 
this RA came on this quickly?  or have you been gradually getting symptoms over years?
 
the best way to get in remission is to be on the DMARDs and TNFs injections.  i would definitely have a heart to heart with your doc about the possibility of starting a Enbrel or Humira med as an adjunct to MTX.
 
are you able to do at least some things for yourself or are you really contracted?  how is walking, typing, eating, etc....?
what types of Xrays have you had?  is there really bad joint deterioration yet?
 
when you feel up to it, please write back to let us know how you are doing.
 
i'm up all night too!  it's awful.  i'm very determined for this to go into remission one day, at least for a while to at least be able to work.
it really changes your life, especially when RA is not controllable and left untreated.  keep the faith & stay strong!  aggressive treatment is really wise to nip this in the bud if this is indeed a newly caught and early RA, because the right treatment can pave the way of the future for the path the disease takes.
 
this is so hard.
you're in the right place though!  welcome to HealingWell & i hope you find a lot of support and guidance here.
 
the best to you!
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/22/2006 12:32 PM (GMT -7)   

thank you for the kind words........

I have had sore joints off and on for the past few years, but only my fingers and toes once in a while. I tohought it was just the weather. Then about 4 weeks ago now, everything just stopped working. My right wrist was first to go, thought it was carpole tunnel. Then my fingers started to swell as long with my toes. Then my ankles, wrists and knees. My hands have been deformed like claws for a month straight now. My shoulders, eldbows, neck are all sollen now. I cant lift my arms, or hold andything, or my right leg is completely disabled now, i have to grab it with my hands to lift it or move it around. Getting in or out of bed,sofa are tub are completely out of the question. I need help with every aspsect of my life. DR, says i have "mild" RA. I burst into tears when he told me that, i was like ok..... what is severe then? On my blood tests, my RA count was 2 points over the normal, and my immflamation count was 10 points over the normal.

I an out of my pain meds yesterday, 3 days early ive been taking 4 vicoden a day because im up all night long too. Dr, wont refill them till Saturday because i took them so fast. If he calls me, im gonna tell him, i cant function, the meds take the pain away for a couple hours then it wears off. My house is a mess, im a mess. My hubby is wonderful, works all day then has to help me when he gets home. I feel like im such a burden on everyone now, and when i see friends they are like oh u are stilllllllll sick? No one understands or seems to care ecept hubby and he is terrified about all this along as i am.

I am trying to talk him, into buying me a nice rocking lazyboy chair something i can get myself out of no problem and sleep in if needed.

Sigh the day has just begun and its gonna be a rough one again.


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/22/2006 3:22 PM (GMT -7)   
 
im looking at my blood work report and my "RDW" is high at 16.20. Dr never talked to me about this result, anyone know what this means?

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/22/2006 3:29 PM (GMT -7)   
Uh, ERIN! We need you to translate... :)
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/22/2006 7:00 PM (GMT -7)   
with the RDW....what is it grouped with? like....what are the 5 labs before it and after it? tryign to figure out if it's an inflammatory/rheumatic panel or blood cell count or what.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/23/2006 7:47 AM (GMT -7)   
It was grouped in the CBC catagory with the wbc,hgb,hct etc...

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/23/2006 12:12 PM (GMT -7)   
yeah  i got it!
 
ok...(RDW) is Red Cell Size Distribution Width.
it's a study helpful with looking at blood disorders & monitoring responses to therapy.
all RBCs have different shapes to some degree, and this RDW test basically indicates how the RBCs look and to see if any are abnormal or shaped funny.
 
basically all this lab is, is a check for anemias.
  • iron deficient anemia
  • vitamin B or pernicious anemia
  • thalassemia
  • immune anemias (from medicines)
 
ok, so you have a RDW of 16.20normal reference is 11.5 through 14.5 and may vary lab to lab. and this test can be very "innacurate" so to speak, if an inexperienced person is doing the lab studies, because a person in the lab analyzes it.  so i would definitely have it repeated.  it may change.
 
so you may have anemia of some sort.  with RA it's common to get it.  and some Dmards can cause it also.
 
do you have anemia that you are aware of already?
 
what was your MCV numbers on your lab?
 
the doc is ordering this RDW to distinguish between anemia of chronic illness, like RA; or if it is an early onset iron deficiency anemia.
 
so there we have it!  now you can go grill em' at the next appointment!  have him explain it! LOL.  or maybe you can explain it to him. tongue
 
but when you get a chance, let me know what the MCV numbers were on you labs. should be under the CBC near the Hg and RBCs.
 
erin :-)
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 2/23/2006 5:08 PM (GMT -7)   
Hi Morticia,

Welcome to Healing Well. I'm so sorry you are going through such a rough experience, but it's so wonderful that you have such a supportive spouse! The people here are absolutely wonderful and helpful! I hope you continue to update us as to how you are doing. It is great to be able to come to a place where people can relate to what you are going through, it helps!!

Lots of hugs,
Kimber
 
Yesterday is but a dream and tomorrow only a vision, but today well lived makes every yesterday a dream of happiness and every tomorrow and vision of hope!


Jasone
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Date Joined Feb 2006
Total Posts : 4
   Posted 2/25/2006 4:40 PM (GMT -7)   
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Post Edited By Moderator (Ducky) : 2/25/2006 5:27:33 PM (GMT-7)


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/25/2006 11:30 PM (GMT -7)   
 
ya what they said, no spamming in our forums nono
Diagnosed: Hypothyroid 1990, Endometriosis 1997, Agrophobia 1998, Objective Tinnitus 2004,Rhematoid Arthritus Feb 2006.
Procedures Done: Gallbladder Removed 1994, 3 Endoscopes, 5 Laps for Endo, Hysterectomy 2003, Angiogram 2003.
Medications now: Synthroid, Lexapro, MTX, Lortab.


Jasone
New Member


Date Joined Feb 2006
Total Posts : 4
   Posted 2/26/2006 7:27 AM (GMT -7)   
sorry did not know
I was just trying to help people, this product really works

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/26/2006 7:55 AM (GMT -7)   
Hey Jasone, you can post information about the product that you feel has worked for you, and you can post the website, as long as you obtain approval through our admin... you can email him at admin@healingwell.net... Then you can post what you want, just make sure you write in the post, that you have received his approval. Best of luck to you - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/27/2006 5:58 AM (GMT -7)   
I hate mornings !!! The RA has hit my pelvic joints and I cant move my legs. I have this pain in my right leg that takes my breath away. I had an Angiogram test done a couple years ago, and the RA is attacking the puncture spot in my groin area on the right side where the needle went into my main artery for the Angiogram. Feels like im being puncutred again over and over. This sucks!
 
Where's my Starbucks with Morphine delivery boy? He's late !!
Diagnosed: Hypothyroid 1990, Endometriosis 1997, Agrophobia 1998, Objective Tinnitus 2004,Rhematoid Arthritus Feb 2006.
Procedures Done: Gallbladder Removed 1994, 3 Endoscopes, 5 Laps for Endo, Hysterectomy 2003, Angiogram 2003.
Medications now: Synthroid, Lexapro, MTX, Lortab.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/27/2006 7:22 AM (GMT -7)   
eyes  ah geez.  yeah, mornings ARE THE WORST.  9 times outa 10 they are.  takes a long time to get the feet on the floor.
that's weird about the puncture site.  i had a spinal tap in May 2004 and it went bad....had to be hospitalized afterwards becaused it leaked and leaked and leaked and wasn't closing up.  and when the Crohns arthritis acts up (which usually is my spine and hips) the spot where the pucture was in my spine hurts the worst.
weird how these things all get connected.
 
how do you do in the mornings?
 
for me, if i wake up at 9am...it takes about 3 to 4 hours before i'm pliable enough to MAYBE get in the shower.  and getting dressed?  it's an all day affair. 
 
hopefully you have a decent day.
take care
 
where are you where you get coffee/morphine delivery boys? LOL tongue sign me up!
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/27/2006 8:55 AM (GMT -7)   
Getting up is a nightmare. I wake whenever this morning it was 4:30 do to my leg screaming in pain. Getting dressed really takes about 10 to 15 minutes, depending on if i need a bra and sock on. If i need my bra, thats another challenge from hell. And socks are out of the question most days. I cant shower till hubby gets home in the evening, I cant lift my leg over the tub to get in. And raise my arms high enough to wash my hair.

The doctor has me just on the MTX for now , because I have no medical insurance and I cant afford the cost of the other medications. Long story to make it short...... I am Canadian living in the USA. No immigrant staus as of yet, so im out of luck on medical coverage.

I phoned home to Vancouver BC and told my doctor there whats going on with me, she is trying to get a time estamted time on how long i will have to wait to get to see a Rheumy there. Once i get an appointment set, I will make arrangements to fly home for more treatment in Canada. So for now the doctor down here has me on vicodens and the MTX. Im ordering the Microplasma meds tomorrow, and gonna be on a cycle of that for three months. Hopefully after thats done, i will be much better and not need to fly home. We were just about to get medical insurance for me down here in january then hubby got laid off for the month. That blew that out the door, and now ive got a "pre-existing" problem and they wont even look at me.
Diagnosed: Hypothyroid 1990, Endometriosis 1997, Agrophobia 1998, Objective Tinnitus 2004,Rhematoid Arthritus Feb 2006.
Procedures Done: Gallbladder Removed 1994, 3 Endoscopes, 5 Laps for Endo, Hysterectomy 2003, Angiogram 2003.
Medications now: Synthroid, Lexapro, MTX, Lortab.


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/27/2006 9:31 AM (GMT -7)   
What kind of pain medications are you all on? Im on Lortab, three times a day i find myself needing more then that, specially at night. I don't want to be taking to much or run out to fast, or the doctor wont refill them. Its frustrating, they seem to wear off around every 4 hours. I need to learn deal with the pain better so I can cut down on them. Im terriffied my liver is going to get fried. I was on Tylenol 3 for 10 years because of my Endometriosis. Finally had a hysterectomy and didnt need much pain killers anymore. And now this RA im right back on them again. Its frustrating.
Diagnosed: Hypothyroid 1990, Endometriosis 1997, Agrophobia 1998, Objective Tinnitus 2004,Rhematoid Arthritus Feb 2006.
Procedures Done: Gallbladder Removed 1994, 3 Endoscopes, 5 Laps for Endo, Hysterectomy 2003, Angiogram 2003.
Medications now: Synthroid, Lexapro, MTX, Lortab.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/27/2006 6:14 PM (GMT -7)   
hey morticia,
wow, i sure know that!  IF I GET TO SLEEP!   man sometimes i'm up 3 nites in a row because the joints throb so badly.
i take Avinza 30mg daily; that's a slow realease morphine.  i'm trying to take it every other day due to constipation problems.  it's OK...nothing takes away the joint pain completely.
i take dilaudud 4mg when needed.  and tylenol when needed.  and of course prednisone when needed. taking Imuran for RA and the Crohns as well and Humira every 4 days.
 
i need alot mostly!
 
luckily, i'm bedrest most of the times so that helps as to not aggravate the RA further.
i do what i can, but unfortunately it's at a disabling point...hopefully not forever! 
that's great you have your hubby.  is he good to you?  that's important.  my Joe is my lifesaver.  pretty much the only thing i look forward to through all of this.  he's very supportive & understanding.
 
i know what ya mean.  i hate having to sacrafice a shower if i need to be somewhere because i can't do both.  and trying to REACH my hair! forget it.
 
i have medicaid ( no insurance and no money....CAN'T WORK! ) ....but, for the Humira....i get it at no cost.  there is a program you apply for and if you cannot afford the RA meds the company provides them for you!  you have to show your income and lack of insurance, but inquire about this at your next doc appt.  it's worth a shot, ya never know.  i think in Canada it's the same deal too.
 
have a goodnight!
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.

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