Guys I seriously cannot cope anymore. No one is taking this seriously. I couldn't even open my mouth this morning and no one is helping me because there is no swelling. I just can't fight it anymore. My folks don't seem to care now it's just like 'oh well you better make the most of it before your disabled then' and even my husband said that the last rheumy was probably right and that maybe I was just a bit run down. I just can't stop crying. My mum and Dad are out with Austin - I can't go because I'm too scared I'll wreck my wrists trying to move his pram. This is seriously affecting my mental health and I don't know what to do anymore.
Hi Julie,
Have you started with the plaquenil yet? I think I remember you saying that u weren't going to take it because you had read on here that most of us haven't had luck with plaquenil alone. I believe that a lot of ppl are put on plaquenil in the beginning and then if there is no improvement, another drug is added. That's the way it was for me and then methotrexate was added and that really helped me for a few years.
I think you should give the plaquenil a try and then if it's still not doing anything after a few weeks, then see what is then suggested. Possibly ask for something for pain while you are waiting for this to work.
Kelly
Hi I don't know what to do - all I know is that I keep reading about this 'window of oppertunity' that if you get the right aggressive treatment at the start, its got a much better chance of working than working your way up when the first lot of meds fail - plus the rheumy that prescribed it said it was for the pain - its not even a pain killer and didn't suggest an eye test or anything - I am so not trusting him.I think it's very common to start out with plaquenil. Then add other meds. A lot of the time it takes a combo of meds to help. This is how they see what works well for you.
Look at it this way...the longer you put it off...the longer it's gonna take to see what's going to work for you. You need to start with something, right? Why not start with the plaquenil? Like I said, most ppl do start with that drug.
As far as the eye test, you can get that set up can't you? I've never had a problem getting that set up once you tell them you are taking plaquenil.
Give it a try
Kelly
I think I'm just freaking out right now because I don't know what to think and who to trust - its horrible - its really affecting my mind.I can understand, there's a lot to think about. I've had RA for about 13 or more years, can't really remember..lol, anyway plaquenil was the first medication that was suggested. It didn't work for me on it's own, but I'm still taking it after all these years plus a few other meds. My point is, you have to start somewhere, Julie. Why not give it a try and see what they suggest if it doesn't end up working for you.
I agree with Kelly; Julie. You've got to start somewhere.
In another post I advised starting with the plaquenil and just seeing what happens. Do like Kelly suggest and just go see the eye doctor yourself. Complications are very, very rare but the eye doctor will know right away what to look for. You'll only need to be checked twice a year while on the medication. My doctor advised seeing an eye doctor; but I was the one that had to set that up....they don't do that for you. So what that he didn't recommend it....WE ARE TELLING YOU; just do it.
Sweetie; I don't want to hurt your feelings in anyway; but didn't you tell me you were in your early 30ties? I imagine you are a very intellegent woman under normal circumstances. You need to get yourself together and start taking control of your own progress. Your depression and paniced personallity at this point is doing nothing but making you worse. You are a new mother; you have got to regain control and get on with your life. Only you can do it. Sitting around saying "I'm confused, I don't know what to do?" is not helping you one bit.
Also you've mentioned mental health more than once. It might be in your best interest to check into that. There's no shame in doing that...lots of people with chronic illnesses go through problems with that; but you need to seek help right away. You have a family that needs you. Only you can help yourself at this point.
We love you Julie....I'm sorry if I've hurt your feelings; it's not my intention....but you have got to snap out of it.
You can live a long, happy life with RA....it's all up to you.
RA will get as big as you'll let it.
[QUOTE=kelstev]I can understand, there's a lot to think about. I've had RA for about 13 or more years, can't really remember..lol, anyway plaquenil was the first medication that was suggested. It didn't work for me on it's own, but I'm still taking it after all these years plus a few other meds. My point is, you have to start somewhere, Julie. Why not give it a try and see what they suggest if it doesn't end up working for you.
[/QUOTE]Julie. Hang in there. Remember you won't feel this way for the rest of your life. It will get better. Also do you think you are suffering from post partum depression or do you think its situational because you have so much to cope with? I don't know what meds you are on but antidepressants can help.
I've felt like you do and thought I couldn't take it anymore but things did get much better. It's also so frustrating to depend on drs who just don't have the answers but I really think they could make it much better for you if they were a little more competent.
"tramadol which is one off morphine" I'm not sure this statement is correct. I take tramadol....and it's not nearly that strong.
Anyway; I do understand where you're at Sweetie; that's one reason I hesitate to say anything at all. It can be confusing especially when you're up against the idiots you've been seeing.
I also understand you're concerns about taking the weaker DMARDS; but that's how I started out 11 years ago. Actually I started with Sulfersalazine along with predisone and shots of cortisone here and there. Eventually we added Plaquenil....then MTX then Humira. Back then they started with the weaker ones to see what results you would have. For years I managed fairly well; but as every year passes I've worked my way out of certain medications. I have no real signs of damage....none that are too serious anyway. My point is; you've got to start somewhere. It would be better to start with this and continue to seek out proper treatment than to sit around for 4 to 6 more months doing nothing. By the time 4 months pass you'll see if you can get by on Plaquenil alone...and if you can't you'll have evidence to show your doctors this isn't working; I've tried it and I still need help.
It's a personal choice I suppose; but I honestly believe if you aren't even being taken seriously at the doctors office you are not in such serious shape that you would need stronger DMARDS and Biologics. Take what they are offering and see how you progress. It won't be as if you're doing nothing....and you never know; it might just help you!!
Julie, we all emphasize with you. I am a big worry wort and my mother tells me I'm just borrowing trouble. Lovie is right, our emotions have a big impact on flare ups and that's the last thing you need; however, I really understand how your mind can take control and then you are in a spin. I've been there; unfortunately, more than once. I spent at least two years fighting doctors in and out of the ER, etc., and I finally went and had a psych eval. I had to because I had started to believe that I was making it all up. After all, that's what all the docs said and like you, I don't swell. Fortunately, I was calm and rational during my eval and I came out with flying colors and the guy wrote a letter to my doc to set him straight. I felt so much better!
Wouldn't it be nice if we could just transfer over our pain so they could feel what we feel. We are so lucky that we don't swell because it is my understanding that the swelling causes the most damage so while it doesn't help us at the docs office because we don't have anything to show them, we are still very fortunate when it comes to damage. It sure doesn't elevate the pain though. Take care of yourself and love that baby! Hopefully your prayers will be answered soon.
Julie...I feel for you. While you are trying to get the proper diagnosis and treatment, have you considered seeing a therapist? From reading your posts and the ones your husband wrote (am I thinking of the right person here?), you sound understandably overwhelmed by all of this. Maybe having somoene who is trained in cognitive-behavioral therapy would be beneficial. I know you are having a rough time now and I'm sending you tons of very gentle hugs. Love, JuliahOk, first off...seek the mental help out. you've posted that you felt suicidal so that right there says you're overwhelmed and need help!I would very seriously get on some kind of anti-depressant.Trust me.I have been suicidal since I was 12. and still battle it today but without my meds. for deprssion and bipolar I wouldn't be here today.Get yourself to dr. asap and get something to calm you down,you are panicing and get an anti-depressant.Pain can make you crazy.I have seen my youngest daughter go insane from pressure in her head.Please get something soon.I am worried about you.
Love ya,
Sheila