Giving up | Arthritis Information

That sounds perhaps more desperate than I feel but after almost 2 months on Plaquenil, I feel no better and perhaps worse. The other day, I woke up and could not will myself to move. That's just not an option with a 3 year old. Not only is it useless but I do not want to ever have him have that image of me. I don't want his childhood (or the next chapter in my life) to be filled with chasing useless remedies that leave me with side effects and no benefits. The only pain med that works is Vicodin. Prednisone has little if any benefit. Vicodin wears off after a couple of hours although I'm supposed to be able to take only 3 a day for relief. Is time release Vicodin any more effective?

I don't know...I just wonder if perhaps I'm just going to have to get used to a new definition of "good" Is there always an undercurrent of pain and you just get used to it? I think its time for a new perspective and somehow I have to find a way to look at this thing in a way that allows me to accept it instead of trying to fix it.

Just feeling frustrated. Thanks for the vent!
Rachel

_popupControl();^ You do know that Plaquenil is only effective in mild RA, if at all? Plaquenil is generally more effective in combination with Sulfasalazine and MTX (37% remission.) Can I ask why you are only taking vicodin and not moving onto more effective DMARDs?

Also, perhaps you need a change in pain meds. You can take one thing for only too long before your body gets used to it.

I feel for you because you have such a young little boy, but I don't think you should EVER give up until you have exhausted all your options.

Wow, I can really feel your frustration, and with good reason. It must be so difficult to deal with a chronic disease and a 3-year-old. I love my 2 1/2 yr. old grand-daughter no end, but she does wear me out. You need all the energy you can get. Having said that, it may just be that the Plaq. needs more time. It took several months for me to get the full benefit of both the Plaq. and MTX. Don't give up on it yet. Or, as Paperdoll said, you may need something else, but I think it's too soon to throw in the towel on the Plaq.

I know how hard it is to wait for results when you so desperately need relief. That's what we're here for. Vent to us every time you feel angry, alone, frustrated, impatient, whatever. We understand you as no one else can and we'll do our best to help you through the bad days.

My RD said Plaq should always be used with a DMARD, never alone--???

Have you tried NSAID's?

I know how you feel; I also have a 3 year old. My pain isn't as bad, but I'm getting worse, while I'm on MTX! But have heard combo therapies (>1 drug) almost always work better, just wating for RD to get me on Plaq. He wanted to go one at a time though, and add, so he wouldn't have to take me off of everything if I had side effects (and couldn't know which drug caused them).

You CAN do this! I know it's really hard to be patient and wait for meds to work - and it's really really frustrating when you have a child to deal with on top of agony and being bone tired and hurting just to move. I've been there - I got RA when I was pregnant so my whole life with children has been with it and waiting for meds to work. Do talk to your Dr though to see if you can get started on a DMARD soon as that at least helped me a little. And sometimes it does mean having to deal with a whole new meaning of "good" days, but it will get better with the right meds.

And not that you want to wait that long, but it does get easier as your child gets older - well relatively speaking - just not too much older I totally understand how you feel. I have a 4 year old and a 2 year old. Try and keep your head up for him, easier said that done I know!!!I know how you feel too. I have a 10 month old and a 3 year old. I am crying right now I am so sore. I hate this f*cking thing. What did I do to deserve this????Hi Rachel, I'm feeling exactly the same. I've been on Plaquenil now for 5-6 months and the pains are getting worse................I'm always told the same old story that I should give it more time!! How long does it need?? I also have a 4 year old daughter and she has special needs so requires a lot of attention. On bad days I just want to sit and cry, and trying to hide pain from a child is very difficult. I have wonderful parents, who help me a lot, without them I don't know what I'd do.Thanks guys! Today is a bit better and every day is a new day, eh?

Dr wanted to start me out on the lowest level of treatment first and work up as need be, thus the Plaq. Aleve tears up my stomach and had a nasty allergic reaction to Celebrex. Ultram, Tylenol and Advil are like taking placebo. That's where the Vicodin came in. Not sure what my other options are as far as that goes.

Also feeling a time crunch to figure out a solution because the Rheumy is SO expensive. First appt incl bloodwork was 0. Still waiting to see what insurance will cover on that but can't afford to just go back endlessly as we experiment. Haven't had my follow up which is in 3 weeks and I'm hoping he'll have some new ideas. He felt like if Plaq was going to work that we'd see some improvement by then (2-3 months) Because I've only seen him once, I'm not sure how to read him yet. I guess I'm just feeling anxious to find an answer and move on, you know?

I know it could be and may get much worse so I'm grateful for how I feel 90% of the time. That last flare up just took me by surprise--I've never felt like that before. I'm back on my feet this afternoon and crossing my fingers to stay that way for a while!

hi sunam sorry to see you are having a bad time.. each dmrd i have
been on has been used whith prednisone.. these meds can take many months
to feel the full benefits.. as you say we have to redefine the word good..
the sad thing is a person gets used to living in pain.. whith my own ra
there have been times when i have thought i dont have ra at all..
hang on in here..

Boney

Sunam, I'm sorry you are having trouble. I was on nothing but Plaquenil and an anti-inflammatory for a year or two. It worked really great during that time for me, but everyone is different. It took about four months to work. I'd say if you are getting worse, not better, it's time to contact your RD about adding another drug or changing the Plaquenil.

Don't settle for having daily pain. There are so many other options out there for you.

Oh sweetie, I am so sorry.

I know how you feel, i have been on arava for about 8 months or so with no reaction and they made me get off prednisone which was the only thing that worked.

I have a 14yr old who is into band and honor band and vacations with the band etc. and i can't get to the meetings etc. and half the time can't go out with the family for family time etc. unless it is a meal and i have to have a good day for that.

RA is very very very very frustrating. There should be something out there that works for people. My drug is prednisone. So far nothing else works.

Plaq is mostly for mild Ra if that, you should talk to the doctors about stronger medication and press for it.

I wish you well.

Sunam -

Have you thought about AP? Check out www.roadback.org. It gave me my life back and I was desperate because my baby was 5 at the time. It's also really inexpensive compared to a lot of our meds.

Hugs,

Pip

Hi Rachel.

I think there is no standard treatment for everyone. I was on sulphasalazine on the onset, but it didn't work for me. I had recurrent flares for 5 years or so. Then I changed doc and treatment by the way to Plaquenil. The result was remarkable. I was without pain for abt 6 yrs until I discontinued Plaquenil because of potential eye toxicity (you have to do regular eye exams every 6 months). That does not mean that the RA was not active. I still had relative high ESR, + CRP... on most occasions but the pain was greatly controlled. I also had a few injections for my swollen hand (result of poorly controlled RA previously) at the start of the Plaquenil treatment.

Me too, I don't see that any of the NSAID works during flares. Sometimes, they may relieve the pain, but only relieve (if you miss one day the pain is back). I find that prednisone does best for long term pain relief.

Generally, my advice is to allow enough time (>6 months - your doc knows best) to see if the treatment works. If not, you will have to talk to your doc and consider other drugs.

Best wishes.

So sorry to read that you're suffering so much..

I wish I was around to help w/ your little one... at least give you some "down time" do you have family that can assist?

I want to add that we have to be our own advocates.. sometimes that means standing up to our RD's and letting them know what we want/need. Be your support...tell your RD that 5 months of this is not working and that you need something more aggressive.. that your little one won't wait for you to feel better...

can you take something to protect your stomach lining? prevacid? anythin?

I'm here if you want to talk.......
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