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Raven67
Regular Member


Date Joined Sep 2007
Total Posts : 155
   Posted 9/2/2007 1:11 AM (GMT -7)   
Hello Everyone,
I am new to this with both chat rooms and a recent diagnosis of Rhematoid Arthritis.  Can't seem to get any straight answers from my Rhematologist. I have a professional career but unable to work since April.  At first my Md thought it was Fibromyalgia until lab work came back.  I am only 40, have 3 kids under 12 and up until April worked approx 60 hours a week.  I have a lot of questions but will start with only a few.  How do you carry on a normal life with this.  I can't seem to get the pain in my hands and shoulders under control and have applied for long Term Disability benefits.  Does this disease keep you from working for long periods of time?  What exactly causes the extreme fatigue?  Not sure if its meds, the RA or I'm falling into a depression.
I am taking 15mg of Methotrexate and 400 mg of hydroxyquinine.
Any advise would be greatly appreciated.
I am also an insulin dependent Diabetic
Thanks
Raven67

babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 9/2/2007 6:48 PM (GMT -7)   
Hi Raven
Welcome to the forum, hope you find the help you need here, it sure has been a lifeline for me! I am also pretty new at this, was just diagnosed in April. Have taken the methotrexate since early May, and just started on plaquenil. Weekends are a little slow on the posts, but I'm sure one of the moderators will come on and give you the advice you need. I'm just a rookie, but will try to help some.
I do daycare in my home, and so far have been able to keep working. I think that you will find that although some people here are on disablility, there are many that keep up with their jobs, it all depends on how you are affected I think. Personally, I am almost 50 (just days away..yikes), and my childrend are grown, but there are several here with young kids.
It is my understanding that the fatigue can come from both the RA itself, and the meds can also have that side effect. Do you take folic acid? That is supposed to help quite a bit with the side effects of the methotrexate. Also hard to have alot of energy when you are hurting so badly. Did your doc give you any anti-inflammatories or pain meds?
If not you may want to call them and let them know how much pain you are in. I guess these meds can take a long time to kick in and really start working on the RA, the NSAIDS or pain med may help get you through until that time. I take Celebrex myself when it gets real bad. Everyone seems to be different, and it can take some time for the doctors to find what will work for you. That's been the toughest part for me, the waiting....unfortunately there doesn't seem to be any quick fixes in this.
But, we are all here for you, and will help any way we can!! Don't hestitate to ask questions, the people here are a wonderful resource...they've helped me more than you can imagine.
Hang in there, and let us know how you are doing>
Jody

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/3/2007 8:39 AM (GMT -7)   

Hi Raven and welcome.

Unfortunately, any of the 3 things you listed can cause extreme fatiuge. If you are in a flare (which it sounds like you are) that will cause the fatigue. Methotrexate can cause it as well as depression.  Jody is right - folic acid can really help as well as adding a B complex vitamin. Your doctor can perscribe something that can take the place or empahsize the folic acid....uh...the name is leucavorin, I think. Someone here just started taking it.

My situation is very similar to yours - I'm 37 with a 6 and 7 year old. I take Arava (same medicine class as methotrexate) and hydorxichloriquine (???? Plaquenil, basically.) I have psoriatic arthritis. I take a few folic acid in the a.m. w/my meds and a b complex at night with my meds.  Drink lots of water.

Other things that may help - if you have any food allergies and sensitivies, I would avoid those. Stretching can sometimes help. Warm soaks as well can often soothe achy bodies.

****


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/3/2007 9:44 AM (GMT -7)   
hi & welcome!
you are doing good in that you're already starting meds that help combat disease progression.  unfortunately, RA is chronic & progressive but many many people do achieve long remissions and can "get back to normal" after a while on the meds for this.
very good idea to already have started disability claims.  you have to cover your rear-end.
RA will be different in each person, some more severe than others.
 
In my case...I was able to work only 1/2 time then 3/4 time....the RA i have got very disabling so i can not work as of  now; and i used to GO GO GO from 4am till midnight! school, work, social life...
 
one thing i can truly say is that you really learn how to cope with this.  and it takes time.  i'm not saying that you're in for a horrendous series of events...but many people will agree that we have all had to make "changes" in order to adapt to living with RA as best we can.  this takes practice!
 
did your doc start you on any sort of pain meds whether it be nsaids or steroids or opiates?
 
hang in there Raven.
sincerely
erin
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan; Reglan; LidoDerm; Diazepam; Rozerem; Diclofenac; Celebrex; Dilaudid 4mg; Duragesic 25mcg/hour. 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 9/3/2007 11:19 AM (GMT -7)   
Hi Raven...

It sounds as if you are in a "flare" and that is probably why you are in so much pain at the moment. When this happens it tends to create more pain and fatigue and I think I read you are taking the methotrexate? Depending on how high your dose is, it can add to the fatigue you are already having.. I'm at 25mg and was having difficulty getting out of bed the day after my dose so I started the Leucovorin and I take it 24hrs after my Methotrexate, not the 6 hrs, because this seems to cancel out the dose of methotrexate and then it wouldn't last the full week.

The day you take your methotrexate drink LOTS of water like Camama said! I learned the hard way on this one and have paid dearly the day after a dosing..

IF your flare is to the point that you can't get through the day and it sounds like you are at that point, call your doctor and go back in, there are meds to get you through rough patches. We have all been there! I'm 36 and I have three children ages 10, 13, and 15 and we are commuters, I attend school full time and average anywhere from 80 to 100 miles on the road daily, schedules with the demands of family makes it difficult when you have RA, and especially when you are in a flare and cannot slow down.

I have learned with my doctor that at times I have to almost spell it out how bad I really hurt!! I finally got a prescription for Celebrex and it works wonders.

Please let us know how you are doing.

Raven67
Regular Member


Date Joined Sep 2007
Total Posts : 155
   Posted 9/3/2007 8:06 PM (GMT -7)   
Thanks Everyone,

I had started taking Celebrex but had to stop because i am having the nerves released in my hand on Tuesday and had to stop 5 days before the surgery. I also take oxycontin as well as Cesamet (Cannabis in pill form) which helps with nausea on the days I take Methotrexate. I've get cortisone injections regularly as well. Some people have said that my Rheumatologist is old school. Do theses meds sound like standard treatment? Also forgot to mention that my Rheumatologist thinks I may also have, and forgive the spelling, Ankylosing Spondilitis. Should know when the results come in next week. There are days that I think this is all over I feel so good. Then i tend to overwork and pay dearly. Thanks for all the advise. It brings me to tears to know that I'm not so alone in this. My hubby does not realy understand at this point and not as supportive as I need him to be so I was feeling pretty alone. Will keep in touch.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/5/2007 8:55 AM (GMT -7)   
hi Raven,
it is a wonderful feeling to know that YOU ARE NOT alone in all of this.  it is a comfort & at times the one thing that you can actually lean on. :-) it's weird that "we" here on the computer can connect & empathize in such a way that "in real life" we sometimes can not always get.
the treatment your rheummy has you on is all right.  it is pretty much standard & the usual except the addition of a TNF med like Enbrel or Humira or Remicade or the newer ones like Orencia & Rituxan.  Those are all shots & infusions.
 
do you take your MTX via an injection? or pill form?
 
yes, the Casemet is highly effective in treating nausea & vomiting...i use Tiagan, benedryl, Meclizine, & sometimes prednisone to help my nausea. also i find that ginger works well for me sometimes too. (like little ginger cookies).
my doc just started me on Oxycontin as well 3 weeks ago...i'm still up in the air about it...it doesn't really work as readily as the dilaudid i take. i take 10mg twice a day, but i think it needs to get bumped up to a higher dose.
 
so you are doing really good in terms of treatment; you have pain management covered, you have disease modifying covered w/ the methotrexate & inflammation covered w/ Celebrex & the occasional steroid injection.
 
it may be a good idea to have a prescription for some prednisone or a Medrol-Dose Pack for when you hit a very bad flare up of RA. i always make sure i have at least a bottle of steroids ALWAYS!!!!!!! saves many a trip to the ER.
 
yikes...ankylosing spondylitis is a real pain in the rear! tongue it effects me too. i hate that all of these things come in a package deal!
when i get AS back spasms, Valium dose break the spasm very quick.  they have been OK since i started the TNF meds; i'm on Remicade now.
 
did you & your doc ever discuss starting Enbrel or Humira or any of these types of medications?
 
oh...and are you overseas? or in the states?
 
take care Raven...hang in there. :-)
erin
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan; Reglan; LidoDerm; Diazepam; Rozerem; Diclofenac; Celebrex; Dilaudid 4mg; Duragesic 25mcg/hour. 

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