newly diagnosed w/ra and not doing well

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

meshell
New Member


Date Joined Apr 2006
Total Posts : 3
   Posted 4/16/2006 2:17 AM (GMT -7)   
hello, I just need to talk to people who are going thru the same thing I am...my husband doesn't seem to understand...I was diagnosed w/rhuematoid arthritis about 2 months ago...I am 37 years old...It started w/swelling in my arch of my feet this past september and pain in my hands...I had to give up all my craft projects and cake decorating...I was dropping things all the time and started having flu like symptoms yet no one else in my family was getting sick...I felt so tired all the time...than my toes started hurt and swell and over a couple of weeks my thumbs and index fingers became very painful..I saw my family doctor who thoght I had gout at first than blood work showed I had ra...I saw a rheumatologist 3 weeks ago and started taking plaquenil and relafan...but instead of finding any relief things have gotten worse..my knees are paInful and stiff my hands and feet burn and are swollen and very painful same for my elbows shoulders neck and back...I keep running low grade fevers and my face gets flush...I have awful dry mouth..my eyes are always bloodshot..... daily activities are so hard..some days I just can't bear to think of this continuing w/no relief....I go to seee the doctor again on Tuesday and hopefully he will try some different medication...Thanks for letting my vent..

dubjean
Regular Member


Date Joined Mar 2006
Total Posts : 38
   Posted 4/16/2006 8:59 PM (GMT -7)   
Hi Meshell, I'm 42 and was diagnosed last month with osteoarthritis in my hands and can I relate! I was put on a prescription that worked with the pain but I started getting real moody and depressed so went off it on Friday and today the pain is back! I enjoy(ed) painting by number, video games, and reading and all of those things HURT! I also drop things or don't feel I have the same strength in my hands/arms as I used to. I've also had problems with my left knee for years so that's been worse lately, too. (That pain didn't go away with the piroxicam.) It sucks when you can't do things you enjoy and even the things you don't really like to do, but must, are painful. I hope you get some relief on Tuesday! I'll be calling my rheumy back then, too, to see if there's something else I can try. It's tough on others to understand the concept of pain without seeing the physical symptoms (like blood or broken bones...lol) but hopefully your husband will learn more about your disease and be able to support and help you both physically and emotionally.

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 4/17/2006 4:33 AM (GMT -7)   

Hi meshell, sorry to hear you're not doing so well right now.  If you're still feeling bad today, you might want to call your rheumatologist.  There are more potent and immediately acting medications that may help you.  Plaquenil takes a long time (up to 6 months) to actually kick in.  Relafen may not be strong enough for you.

I hope you're feeling better soon.

Elcamino


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/17/2006 6:11 AM (GMT -7)   
hi Meshell,
i am glad that you found this site, welcome to HealingWell!  it is unfortunate that we all meet THIS way.
yep, sure sounds how the way RA attacks the joints.
the first thing you want to tackle is stopping the progression of RA and pain relief.
DMARDs do take a while to work systemically, but they are needed.  talk about Enbrel & Humira as well whne you see the rehummy next.  you can even do a combination of say Enbrel & methotrexate (a TNF and a DMARD) to help slow the RA.  it is shown that more aggressive therapies & treatments done EARLIER is better than waiting it out. there is also a better chance of avoiding disibility & to hit a remission faster. so early diagnoses and early treatment are key.
 
for pain & inflammation...you may benefit from prednisone right now.  we all hate it...but it is a lifesaver.  NSAIDs & steroids are like the only thing that really handles the throbbing wretched pain of RA.  opioids for pain management are good to have as an adjunct if things like Advil or regular Tylenol are not working.
 
you could be experiencing what is called a flare.  it's an acute somtimes sudden increase in pain/swelling/stiffness and fatigue.  some flares are so bad that they really knock you to the ground for days.  but a good thing is, as you learn more about how the RA effects your body...you can prepare yourself for flares, know what precipitates them and know what aggrevates the joints.
 
i know all too well the feeling of having to give up almost everything because of mobility and pain issues related to RA. my case was tolerable up until mid 2004, but then the RA just progressed too rapidly & got out of control really fast. i'm 25 & had to stop working last May...one thing is for sure: this disease does not discriminate against age.
 
one hour at a time.
sincerely,
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.


Crohnsmom16
New Member


Date Joined Jan 2006
Total Posts : 10
   Posted 4/17/2006 9:49 AM (GMT -7)   
Hi Meshell,
I am sorry to hear about your diagnosis. I am 42 yrs old and also newly diagnosed with RA. I am feeling frustrated about the medications as well, seems like some of them make you feel worse. I have to strongly suggest that you advocate for yourself when you talk to the doctors. (I learned that when my then 12 yr old daughter was diagnosed with Crohns disease 2 yrs ago). You know how you feel and the more educated you get on this the more you can relay to the Dr's. about what you feel and need. I have learned alot from reading the forums here on healingwell it has helped tremendously and you dont feel so alone. I got the same response from my husband at first, telling me "honey, you'll be fine". I wanted to scream! Hang in there and good luck at your appointment.
Kathy

cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 4/17/2006 5:23 PM (GMT -7)   
I'm kind-of the jerk around here, always with the same message.
Most of us (RA folk) have gone through months of Dr. appointments, tests, different drugs, different diagnosis ... I have always thought that it is because doctors would rather they find something else wrong with you than RA, that and typically the RA drugs like Enbrel, Methotrexate (MTX) and such take a long time to work.
Watch out for the trap many find themselves in, they get a few heavy duty hits of prednisone (sp?) and feel good for a week or so, then are real bummed because they slip right back to feeling poorly. For most, long term predinsone is not a solution, though there are some who have been on it for awhile.

Oh yeah, my message. It is your body, demand the attention you feel is fair. Docs are there to serve, be patient, but help them help you. You will get discouraged, but giving up is not an option (or maybe just a bad option). You must stay tough and fight the disease any way you can.

be patient but persistent ... Craig

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/18/2006 5:31 PM (GMT -7)   
Amen to that!

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.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/18/2006 5:39 PM (GMT -7)   

I think you're absolutely correct. Especially when it comes to RA, for some reason it is very difficult for docs to settle a diagnosis.  And when they do...they WOULD rather pump a person full of roids only masking the problem further.  If not that...it's running through 1200 medications before being put on a TNF or DMARD.

The prednisone really is good for acute flares.

This also hits another aspect.  Like you said Craig, they are there to serve you...really they are!  It's a business! I'm finding that doctor's are begining to become more receptive to a patient that comes in already with information on what they want to do and together can be more pro-active.

I truly hope no one here has to go through years of bull**** when newly diagnosed.  Took my docs 5 years to get their act together & start the TNFs and DMARDs (actually treating the disease now, not just the symptoms).

Cheers!

 


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.


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 4/23/2006 8:59 AM (GMT -7)   
Hi,I'm sorry that you are having to deal with RA.I know first hand how RA can do and it is not a walk inthe park.I have crohns and I have RA,OA,sjerens and I have AS to top it off.I did like you I swelled up pretty bad and I was sent to see a Rheumy and was told I had RA because my Dad has it so it was not a shock to me I have since learned that I carry a gene called HLA-B27 gene and my Dad carry's that gene as well.I would swell so that there for about a year I was in a wheel-chair.I'am out of the wheel-chair but I still deal with swelling just not as sever as what it was before,
Thanks
Curley......
a.k.a.Mela...........

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 9:33 AM (GMT -7)
There are a total of 2,735,875 posts in 301,335 threads.
View Active Threads


Who's Online
This forum has 151440 registered members. Please welcome our newest member, Ian88.
238 Guest(s), 14 Registered Member(s) are currently online.  Details
ResilienceR, PeteZa, Psilociraptor, Wings of Eagles, Rebel_runner, Ian88, Christine1946, Michael_T, Girlie, BillyBob@388, Derwood, pmm73, DennisinNY, nostress


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer