I sure hope you do okay. I'll be looking for your updates Lorster, do you take Milk Thistle? I find when I feel particularly crappy like I have too much meds in my system (I think they can build up) the milk thistle helps me feel more cleared out in my liver.Lori - I went off Plaquenil cold turkey and never felt a thing. I was pretty sure it was the wrong drug for me as nothing was changing. Be good to yourself for the next few days, and good luck. Take care ~~ CathyI have been off of all my meds for 2 months now apart from tramadol for pain. My RA is bad but health wise I feel 100% better. I realise how ill I was feeling due to the side effects of other meds. Not sure what to do about my RA as its keeping me housebound at the moment for much of the time .Wishing you good luck Lorster. I hope everything goes well. See thats why I don't want to go on the strong meds. I just don't do well and I know once I start getting those horrible side effects I will stop as I have done in the past. It is very frustrating for my doctors but I can't help it. It's like my body starts telling me its getting poisoned. I know these meds help the RA but is worth what it does to our organs. I like you Pin Cushion suffer from the RA but all around I feel good. Let us know about the CQ10. I'm going to buy some fish oil too. Right now I take Naproxen.I use the meds and here is why:
I was in a wheelchair for over 6 months due to a serious accident and had to relearn how to walk. I will do absolutely anything to not be housebound or in a wheechair ever again.
2) I have no desire to have a heart attack or a stroke because of ongoing inflammation. My father died at the age of 59 from a massive heart attack. He had RA and Myasthenia Gravis. Since heart disease runs in my family, I choose to treat my RA agressively
I couldn't handle the nausea & headaches either but if faced with a flare like I had a few months ago I would stick a needle in my eye loaded with snake poison if I thought it would make the pain stop. I've endured a lot of painful things in my lifetime...childbirth, numerous surgeries, a broken bone or 2, but NOTHING hurt me like the 2 major RA flares I've experienced, NOTHING!
Best wishes!
Lori -
I'm glad you are weaning the meds but....have you considered at least adding in some probiotics? Please.
Pip
Good luck, Lorster.
Lorster.... I wish you the best.
Lynn49......... I'm where you are.. I've had to wear a full leg brace and endured surgery.. I have the beginnings of the swan on my right hand... I will not lose what dignity and mobility I have left... as much as I hate the meds.. I will keep them or something better
I feel great on my meds, so much better than when I was housebound and then using a wheelchair or walker because I was so swollen and inflammed. "Great" is relative to where you've come from and if this is as "great" as it's going to get then bring on the meds.
Unfortunately, I have interstitial lung disease and cardiac issues directly related to RA and I'm one of those people that you'll read about in the statistics that has died from RA. Meds are my life and believe me when I say, I'd prefer not to take any meds but I don't want to go back to my pre med life or I should say lack of life. These meds have given me back my life. I don't know for how long but I'm in it for the long run I hope. Lindy
For me personally, I don't need the meds and feel better off them. But by no means do I imply that anyone of you should go off or not take your meds. I do not have joint damage, or have I had any. If that were the case, I would not consider what I am doing. It is just that I cannot work 12 hours a day, day after day and feel that I am going to throw up and be dizzy and have headaches so bad that I cannot think straight. For me, work is a reality and I have to work 30 hours a week to pay the bills. Meds for many of you are your life line. I may be there one of these days due to the decisions I am making today. But I have to take that chance because I want to feel good today, not worry about how I will feel a year or two from now. Does that make sense?
Pam, please contact someone that can help you get your meds for free if you are at risk for having irreversible damage from your RA. If you have had damage, you cannot go without and need to find a way to get the meds you need. I do not have an issue with the financial part of it, plus plaq is cheap, my decision is strictly physical. Lorster, I am so happy for you and I hope this turns out to be the best decision you ever made.
I would be afraid to go off my meds unless my doctor told me I could and how to taper off if necessary. Why were you on the beta blocker to begin with? Have you addressed whatever issues it was supposed to fix?
Lorster, I hope this works well for you. I guess being so miserable with the side effects makes this worth a shot. You can always go back on if you have to. I'd just be concerned about joint damage. Maybe you haven't any this far because of the meds. But I imagine your doctor will be monitering that, right?Jas, i was on a beta blocker to prevent migraines. i have had some increases in my heart rate since going off but i think that will subside over time. I hope this is not a mistake, but I can go back. Just hope I don't have to.
Linncn, I don't feel that I really have a doctor and I certainly do not have a rheumy. I go in, usually for a check up, and i tell her what I want and she writes up the Rx and out the door I go. I don't find that beneficial to my health. I don't have the answers so I pay the doctor for them but she does not have a clue about this disease, pure and simple. I'm going to see the new RD as soon as he settle in. I hope he gets settled in soon so this can get worked out. Are you worried about flaring now that you're off the meds? I don't like taking mine, but I'm very afraid of going back to how I was. I don't have side effects though, so it's not the big dilemma it is for you.Lori - I am sure with your medical background and nursing degree, you are doing what you think is right for you. It's your body, and if you have to go back on meds, you will. Plus, I believe very strong that humans have the ability to do things that help them, instinctively. If this is where your mind is taking you, it must be for a good reason.
Sometimes a switch in meds or just giving your body a rest from them for a bit is what's right for some of us. Individual snowflakes.
Lorster, I believe you have to do what's right for YOU but I would be terrified of the joint damage I'd have down the road if I stopped my meds. Plus, I honestly don't feel any nausea or headaches, as a matter of fact I don't notice any side effects at all so I guess I'm lucky.I stopped years ago. I actually was on plaquinel at the time. I got fed up with all the medications. Hated buying them....taking them.....being a slave to the whole routine. I actually was doing really well and didn't think I needed them at all. My RD at the time said "Don't do it. You'll be back in here in less than 6 months in worse shape than ever". Now I've never really been one to just follow orders blindly. I figured I'd try it and see what happened.
I did pretty good for a while but in the end she was right. I made it a little more than 6 months mainly because I didn't want to hear "I told you so" ANYWAY; We restarted the plaquinel and it didn't work nearly as well as it did in the beginning. We fooled around with the dose for a while until I finally agreed to move onto MTX. I think we waisted about another year adjusting the dose, adding anti-inflammatories, pain meds, etx. Finally I did achieve success again; but it took quite a while.
I think my point is; everyone has to see for themselves what works best. No one wants to be told "You are going to have to take medication for the rest of your life." It's a hard pill to swallow (pun intended I guess; lol) and many of us have to either prove them wrong....or admit their right. One way or the other I think it's something we all have to go through at some point.
Here's to hoping you are one of the ones that proves them wrong!
Copyright ArthritisInsight.com