Relefan/Methtrexate

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Katina
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 7/8/2006 10:11 AM (GMT -7)   
ANYONE HAVE ADVICE FOR ME???
 
I am 32 next week and I have had a bad case of Rheumatoid Arthrits since I was 25.  It took 4 years for a proper diagnosis.  I am in severe chronic pain daily.  My hands,feet,knees,ankles,and my neck hurt all the time.  I finally got on methotrexate and it was not working.  I know take it again and I take 12 tabs a week. I also take 2 relefan every day.  I hate taking the meds I want to be normal again and play with my kids.  I dont know if anything else that may work for this rare type I have but the bones in my feet are being eaten away by the arthritis.  I was told I may be crippled in a few years and my kids are 11,9,and 6 is there any hope. Is my doctor a quack or do I have to live this way forever???

TeeB
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 7/8/2006 11:15 AM (GMT -7)   

Hi,

     I wish you better days!  Has your rheumy considered Humira, Enbrel or Remicade?  I started taking the methotrexate about 2-3 mos ago.  It helps but still in daily pain and limited.  I took my first inj of Humira two weeks ago I noticed the swelling was less.  I take my next one on Monday.

     It is hard not to stress over our conditions, but try not to as much as you can so it doesn't make it worst.

Take care of you and hope you start feeling some relieve.

 

Tee

 

 

 


Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths.  Proverbs 3:5-6
 
Dx:  Rheumatoid Arthiris, Fibro, Polyarthritis, Asthma, IBS, Migraines, TMJ, Insomnia, Ischemic Colitis, Mitral Valve Prolapse, Vasovagal Syncope, Low Blood Pressure, Allergies, Bladder etc...
 
 
 


Katina
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 7/8/2006 11:45 AM (GMT -7)   

Thanks for the reply,

 

I try real hard not to stress,but then there are limitations.  I work in the health care field with alot of elderly people and I see what the aging process of this disease does to people.  So yea I am worried about the effects later on in life. I am not the healthies person and worry alot about the meds I take and the amount of them.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/8/2006 5:50 PM (GMT -7)   

Hi Katina,

Sorry to hear you're having such a hard time.  Tee has a point.  Has your doctor considered any of the biologics (enbrel, humira, remicade, and a whole host of new ones that have recently been FDA approved)?

Since you're already taking mtx, if you added, for example, enbrel, that might make a world of difference.  My rheumy put me directly on the biologics without doing mtx, but only because of the pregnancy issues with mtx.  Enbrel isn't working completely for me, but is helping a bit.  I may be adding mtx next week.  The combination of those two drugs, in particular, are noted as being very effective.  But you could use any combination you and your doctor wanted. 

Elcamino

By the way, I took Relafen for my first year after dx.  It worked pretty well at first, but I ended up with some nasty ulcers in my colon as a result.  I may just be a bit different than most, but you really need to be careful with the NSAIDS.

 


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


Katina
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 7/8/2006 10:23 PM (GMT -7)   
Hey thanks for the info. on Relefan.  I do not like it and I am always afraid of the side effects.  As far as other medications I was on prednisone and something else I cannot remember the med. but I was done wrong by the doctor I was seeing.  I had went in for testing for the pain I had.  The doc. had xrays done and they never gave me the results until a year later by that time it was so bad the RA was eating the bones in my feet. I also had 3 large cysts on my right hand and he wanted to slice them to drain them. But there was nothing in them. It was bad inflamation.  I also have a large cyst on the back of my right knee and a RA nodule on the back of my left ankle.  I am know seeing a specialist and I am 2 yrs behind on treatment. I want to get better and be able to be more active,I am going to see him next week and see if I can get something diffrent.  It seems there has to be more I can do to help this process get better instead it stays the same even on the meds I am taking.  My specialist doesnt really want me on anything else.
 
But I think there is better out there for me I just have to find it.
 
thanks a bunch
Katina

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/9/2006 4:42 AM (GMT -7)   

It sounds like you are really in bad shape right now.  Ask your doctors about adding a biologic to the mtx.  In the meantime, you  might ask about taking prednisone to keep the swelling and inflammation down until your mtx kicks in and does what it's supposed to do.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD
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 7/9/2006 8:00 AM (GMT -7)   
Dear Katina,
I cannot stress enough how right Elcamino is.
Adding a potent medication like Remicade, Humira or Enbrel (or even the newer ones that just came out) plus another immunosuppressant is the only way to suppress and slow down and maybe even stop the progression for a while of this disease.  Given, it cannot go away and we have it for the duration...but unless something is there to slow things down, there lies a bad road ahead of which I am sure you are aware.
For about 10 years I recieved NO treatment for RA and at 25 years old...I'm going through the disability process already.
I wish that at 16 someone would have shook me and said, "You need to get a move on!"  Heck, I wish one of my MDs at the time had taken this seriously and not have said,"Oh you'll develop it when your 60 it's probably only genetic that's why it's showing up in your blood work."
If at the time I didn't think of myself as invincible and if I knew then what I know now...I would have stuck up for myself and NOT listened to the doctors.
But I believed what they told me...because I was a kid!
You are sometimes your own BEST advocate for your health.
In my prayers,
erin
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


Katina
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 7/9/2006 8:18 AM (GMT -7)   

Erin, Thanks for the support. 16 is so young to develop the disease,bit its there.  i had one dr. say "You have no RA factor showing up". then a few months later they were flabergasted that the norm is usually 90% and mine was 167%.  WOW what a shock they could not beleive I could still walk and function.  I was a waitress for 3 yrs. and I dont know how I did it. But I am going to ask the Dr. to give me some thing else hopefully it will work.  Thanks so much to those of you that have replied I reallly appreciate it..

 

katina


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 7/15/2006 5:12 PM (GMT -7)   
Katina Hi and Welcome to HW,glade you found us,sorry that you are having to deal with this.I have to agree with what Elcomino and Erin on this one.I have three types of athritis =RA,OA,AS I as wll have Crohns and Sejerens as well.My reasonI'am telling you this is so you will see were I'm coming from.

I as of right now am on Plaqunile,Humra,I was on Methotrexate for over two year's but had to come off of it due to some other med's that I'm having to take for my crohns.

I was first diagnosed with crohns and keept complaining that my joint's were hurting so bad I just could not stand the pain and at the time death would have been better as far as I was concerned.

I was sent to see a Rheumatolagist and was tested and by this time I was so swollen I could not walk so I was in a wheel-chair for a year and we tried Remicade and I built up ant-serum-sickness so no more Remicade.

Finally after a year of try every drug known to man kind we went to Humira and that it the number one drug that I give full credit to getting me out of the wheel-chair.I'am still on this drug.

I still have flare's infact about three week's ago I had a bad flare and I got steroid shot's but we have to be careful using them because steroids cause me to have lung problems.

When my arthritis is doing ok I see my Rheumy every two month's but if I am havning problems then it is once a month.I was tested for the HLA-B27 gene and my dad has tested posative as well.

I would like to show you what I looked like at my worst if that is ok.I do hope that you get some relief soon and please do call your doc and see if they can get you in sooner if not at least be put on councilation list.Good luck and please let us know how you are doing and we will be thinking of you and have you in our prayers as well.
Thanks
Curley......
a.k.a.Mela...........


Katina
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 7/22/2006 9:46 AM (GMT -7)   
confused  Hello, And Thanks Curly for the reply.  I do not mind seeing what you look like. I had a real nad day yesterday.  I could not walk my knees and hands hurt so bad. My co-workers took me to my car in a wheel chair. Thank goodness they are all so supportive.  I have talked to my Rhuemy and he dont want to put me on anything else. He wants to leave me on just the Methtrexate and Relefan.  I am in a lot of ain and barely play with the kids.  I stay in bed on my days off and feel bad for my family. Any suggestions from any one on any thing special I should be doing. Besides looking for a new Rhuemy.
 
Thanks to Everyone for the support
 
katina
Katina Flowers


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/22/2006 4:52 PM (GMT -7)   
wow, katina..."is there something special you should be doing?"  that tugged on my heart.
being in bed myself and badly in pain & progressed RA it's hard to find those things that carry us through it all.
in this case it may be your children.
whatever happiness or joy they bring...even if it's small, that's important.
it's important to our "wellness"...not exactly our "physical health".  you being in the medical field i am sure you know what i mean.
you're touching more people than you know.
an important action to do would to very sure you have or start to build a very strong support network.  someone or a facility to help w/ getting to docs, house needs, groceries, cleaning, medicine pick up, getting the kids when you can't, and just having a network of people to fall back on.  knowing that you are not a burden is hard to swallow.  i still feel like one most times no matter how many times people tell me,"it's no problem taking you here or there..."
 
what's it like at home?
GodBless and take care,
erin :-)
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


Katina
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 7/23/2006 5:49 PM (GMT -7)   
Hi, Thanks for the reply.  at home things are simple.  No extra furniture to move around,no nick nacks to dust.  Plain and Simple. I don't do much at home, my husband stays at home and does almost everything.  He has Bipolar and Manics dep.  he enjoys being home. he got dissability on the first try.  So we have the kids and they are great.  they help out alot.

Katina Flowers

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