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ouch50
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/24/2010 10:10 PM (GMT -7)   
Just wanted to introduce myself.  I have RA and nobody I know has it, so there is nobody to talk to about it.  It is hard to explain to your family why you could walk yesterday, but today your ankles won't support you.  Or how I could make dinner today, and tomorrow I may not be able to hold my coffee cup.  I live in the eastern US, am a female, have two kids ages 23 & 15, love animals.  I was working and attending school before my RA first showed up about 18 months ago.  Looking forward to hearing from all of you.

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 3/25/2010 8:19 AM (GMT -7)   
welcome ouch
 
What kind of meds are you on? I was as you are during onset but now that my meds have been regulated I don't have such varied flucuations anymore. I have some days that are acheir than others but unless I'm in a flare I can walk and carry on normal activities.  What does your doctor say about this? 18 months seems like a long time to still have such swings- but I know some people don't respond to meds well at all. Hope you can get some sort of normalcy soon.

ouch50
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/25/2010 10:51 PM (GMT -7)   
Hi Weary,
 
My current meds are: Methadone 10mg (One 4xday), Oxycodone 30mg (One every 4 hours), Morphine ER 30mg (1 @ bedtime), Prednisone 10mg (1 a day),
Leflinomide (arava) 10mg (1 a day).  I haven't been able to get to my Rheumatologist because I am not insured right now.  My pain management dr prescribes all but the Leflinomide.  I have only been to the RA doc twice so far.  I lost my medical insurance when I was approved for disability last October.  There is a 2 yr wait for Medicare and I am so confused as to what insurance to purchase.  Last month I agreed to  SmartHealth Advantage Choice for $125 /month and it looks like it is only a discount program for prescriptions and services.  I need to drop them and call around for real insurance.  On top of the RA I was also diagnosed with Psoratic A. 
 
I am sorry this is so long.  I know you are thinking that I am being pumped with medication that just masks the problem.  Last year before I was able to get my initial appt with RA doc, my PM doc had me on 40mgs Methadone 4 times a day, and I was able to work, attend classes, be a mom, a daughter, & a sister.  When I went for my monthly PM appt, I was told that the DEA is making him lower the doses of Methadone due to several people overdosing, having heart attacks and dying.  I was cut from 4 to 2 tablets, 4x/day.  It was Thanksgiving/Christmas and I was having withdrawls the whole month.  My next monthly PM appt was cut to 1 tablet, 4x/day & the Morphine was added because I could not sleep and the pain meds still arent working.  I am so angry that I am bedridden for maybe 3-4 days a week because Joe Shmo didnt know how to take his meds without dying.  Do you think my doc is telling the truth?  I practically begged him today to increase the Methadone dose and he said he couldnt because of the DEA, but he would be happy to inject my joints with medication.  Nope, been there, done that!!!!

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 3/26/2010 5:28 AM (GMT -7)   
My goodness Ouch- I am no doctor but my thought is exactly what you said I would think. They are masking the RA with pain meds and they aren't doing a very good job of that if you are bed ridden 3-4 x per week!

I don't blame you for trying to get relief from RA pain during onset mine was so bad I truly wanted to die as nothing was giving me relief...I don't know anything about arava is 10 mgs. a significant amount for that? 10 mgs. of prednisone doesn't sound adequate for the level of pain you are in- not that you can stay on mega doses for long.

My doctor turned me around with MTX and 40 mgs. of prednisone a day. Then he weaned me off the prednisone over a course of a year. Everyone is different of course- what's right for me or what works for me is not for everyone.

I sure wish you could get yourself to another RD - you need an RD for RA -it's a speciality you can't fool around with RA.

I wish you all the best

mariette
New Member


Date Joined Dec 2009
Total Posts : 17
   Posted 3/27/2010 1:14 PM (GMT -7)   
Hi ouch, this is a very bad situation. I dont understand much about the insurance side as i am in the UK. How can you not receive the correct meds due to finance?!! As for cutting down and saying they cant prescribe anymore, surely there must be information regarding this that yopu can check on. To be bedridden 3-4 days per week is unbelievable. I am on mtx 20mg which does nothing for me, I feel it is very over rated. I have just started on plaquenil at 200mg per day. My pain meds dont really help either, tramadol 100mgx 4 and paracetemol 500mg x 4. I alsol take amtitriptyline at night 25mg.
I dont knlow how you can get to see a rheumy in your situation, but there must be some help for you financially, just because you are on disability doesnt mean you dont need proper medication. I hope you can get some support and advice, you need to live your life, not remain bedridden. Take care of yourself as much as you can x
 
 
Mariette
 
 
dx- RA Sjogrens, Raynaud's carpal tunnel and overlap syndrome lupus/MCTD
 


so very tired
Regular Member


Date Joined Mar 2010
Total Posts : 26
   Posted 3/28/2010 10:51 AM (GMT -7)   
Healthcare reform --who needs that? Insurance companys are albout the almighty $$$$ that sucks!
What happen to treating the patient..
MAybe the new reform can help-- maybe not..but something has to change......

I am on Just on Humira currently.
Prednisone was great but can not stay on it forever! I WAs on 60 mg for a few months. then weaned off. A sideeffect of prednisone is increased eye pressure which can lead to glaucoma and blindness...WELL.... of course I had increased eye pressure
"sky high" was the words my Eye Doc used... so I was weaned off pred. and retested after being off one month --and my pressure were normal ( Thank God)

You need to see a RA and the meds do seem a bit much.. I;d take anything if it worked but from your post it is not working ---so why take it
?

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 3/28/2010 2:28 PM (GMT -7)   
so very- have you taken advantage of the Humira co payment assistance? I did and I only pay $5 per month. They never once asked what my income is either.

n2slugs
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/29/2010 7:01 PM (GMT -7)   
I am on Embrel and cannot quite remember the assistance program, but I pay NOTHING. It is that way for either 6 months or a year and then very small copay. It sounds like you are in a really bad spot. That level of frustration only makes things worse, makes you feel alone, and doesn't move you in the right direction.

It doesn't matter whether you have told anyone close to you or not, there are folks here who can lend an ear!
Living with: Ankylosing Spondylitis, heart disease
Getting help from: Enbrel, Indomethacin, Toprol, Teveten
Hoping for: More sunny days than cloudy ones.


psingh
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/30/2010 8:30 PM (GMT -7)   
I was told by my doctor that Humira should now be very cheap in market as Abbott has tremendously reduced the price for patients who are not insured and she quotes as $40.I will check with her tomorrow and reply.I was on methotrexate 20 mg and prednisone and when that didnt work she put me on Humira and Arava (20 mg) for 1 yr.She wants to treat my RA aggressively as I was not seeing any relief and my joints were getting deformed. I did a mistake of getting off Arava every time my hair used to fall and just Humira by itself has not able to give me relief completely.Its 2 yrs now with my RA and still I feel I have lot of deformities. So I would suggest asking your doctor about Abott reducing the prices last month for Humira or calling Abott directly to understand from them if they can help
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