crazy for dropping meds? | Arthritis Information

I guess you will all think I have lost my mind (my mother sure does) - anyway I was told there is this short "window" for meds to stop progression and since I have only been diagnosed for 3 months- my rheumy says "this is do or die"----- I change my mind daily and have actually quit meds 2 x now because side effects are so bad. Sometimes I think they are worse than the pain itself. Does anyone agree with me? People literally think I have lost my mind!

Sure...I agree with you...well at least when I was first diagnosed. I put off taking the meds that I was told to take. Then the opposite happened. The pain was actually worse than what the side effects could be and I ended up taking the meds. Afterall, what kind of life would I have if I couldn't get out of bed

I really understand how you feel. I was afraid of the side effects and thought also about the long term effects of being on these meds. Now 15 years into this, I understand why it's so important to get the right meds into you.

WE have all been there, what you have to weigh in is what will happen if you do not do something now about your ra. I can tell you I got sick on most of the meds when I first started them but as the rd said your body gets use to them. I know that is a terrible thing to think about besides saying but you have attack this disease aggresively the longer you wait the harder it is going to be for you. Talk to your dr about alternative medication if you feel the prescription meds are not for you. Just remember you are not alone. meme

Do most people have the pain in every joint? This was just so sudden I guess. One day I was fine- the next I had no use of my arms and my hands, feet, elbows, knees, --everything was hurting. I am still in shock I guess. And after seeing my mothers transformation after taking pred for 2 years--wow. It just amazes me what meds can do... and sometimes they do nothing for the pain... just cause more problems. I have been back and forth from -I will do anything to stop the pain to I have no pain... why take the meds?

Thanks for your help!

Stacy

Stacy you have to realise it will take some time to find the right combo of meds for you but once it does and you give the meds a little time, you can be back to your old self. Have the dr check you for hypothyroidism too, sometimes if your thyroid level is low it can cause your joints to hurt even more. memeHi Stacy - I do not think there is a hard and fast answer to your question. I was diagnosed with severe RA 10 years ago and have stubbornly refused to go on what I call the really toxic drugs like MTX, biologics, remicade etc. I have taken celebrex, vioxx, antiinflams, panadol, codeine & sleeping pills. The antiinflams gave me stomach ulcers, and most of the other drugs have given problems - still need my painkillers though at times. I have a history of bad reactions to a lot of drugs. At times I follow a strict diet but more often than not it is a case of sometimes I do and sometimes my diet is really bad.
I have some deformities in the knuckles in my fingers and feet, have severe fatigue (have fibromyalgia as well)
and at times have flares although not as often or usually as severe as the first few years but they can sometimes be quite bad.
While I cant be sure I havent any internal damage it seems to me I am maybe no better nor worse than many people who take MTX, steroids etc but it is a gamble and one I am taking. Obviously it is different for everyone and I do believe if you keep off the heavy medication then it is necessary to try other alternatives.
I think to research for yourself on the net and talk to many people will help reach a decisiobn. RA is so unpredictible and can burn itself out or some people have it milder than others so research and then do what you truly feel you are comfortable with doing - it is a gamble both ways but the choice will be yours.
Good luck in whatever you do.

To discard med is a good decision, provided you know and use other effective alternative/s to control the pain and the disease

It is possible to do so, as I did it almost 20years ago.

When I explored, searched, found and used Wild Lingzhi formula to effectively stop pain and control the disease - there was no fear as there was no need for meds. It worked with no apparent side effect. There was no turning back, the battles could be many but each time the disease became weak and weaker. The reversal was immenent after each battle of flare until there was no significant threat.

You need to focus totally to rejuvenate your health with herbs and natural foods.

kokako8839180.2291550926

Dear Stacy, you are not crazy. We have all experienced this 'I'm not taking those cancer drugs", (MTX) and some of our friends and family say 'throw those things away" , so our inclination is to go the natural route.....I know what this can do to people as I watched my grandmother curl up in the fetal position, scream with pain when touched or moved, when I was a child. There were no drugs like we have today! I cry when I think of her. So, I inherited this ugly 'stuff' and now I'm stuck with it. I can't ignore it .....

I haven't had the reactions you describe (mouth sores) so I can't relate by experience as it must be very painful. There are so many choices for drugs, please read the posts where people say what they take enbril, remicade , arava, so hopefully you can find one that works.

I had that 'every joint ached' about 2 months ago, after surgery. the pain was as you say unbarable! and every day it would be worse somewhere, I couldn't sleep at night because my elbows, knees, heels...yes, hands ....neck....everything ached. Now, after Remicade, mtx & prednisone I'm 'making it'. Please, look into a different drug. If you give it up your body will suffer inside and out (this stuff is nasty).

thinking of you, sarah

Stacey

No one wants to take the meds and I suspect most of us have stopped them once or twice or more. Pain can be worked through for so many but unfortunately its not so easy to work around severe joint damage.

Talk to your doctor so that you can find a treatment you can tolerate. Ignoring the disease will not make it go away and just cause you more problems in the long run

I think maybe we all have to go through this. After about three years on meds. Originally Sulfersalizine, Predisone, Relifin.....I was feeling really good. Didn't think I needed the meds; felt like I was cured!

My doctor at the time warned me not to go off the meds; but I kind of have to figure things out for myself. Stubborn my MOther calls it; but it's just a trait I have.

ANYWAY, after about 6 months I was back at the RD's office admitting I was wrong and begging her to get me back to where I was. I think it took about 10 years to go me to a good place.....and trust me I know better than to abandon my meds all together.

You'll need something but it will have to be a realization that you come to on your own. Evenutually you'll come to that conclusion; but it might take time.

Just know you are not alone in your fears. We've all had them....and still struggle with them at times.

MAYBE; if you're heart set on stopping the meds you should look into some things like Kokako describes. I have hear of some using methods like these successfully. Now might be the time to investigate those things on your own and come to your own conculsions.

Best of luck in your journey.

Stacy I also quit the RA meds and 2 months later was begging my Dr for them back to which she obliged. I was terribly swollen and in horrible pain. Now even though the meds make me sick 1 to 2 days a week I get the other days where I can walk some and get something accomplished so I chose the lesser of 2 evils.

This disease is the pits but we can at least slow down or stop the progression. Take care.

Stacy,

I know what you're talking about. I was diagnosed around a year ago although I'd been in pain long before that. I still haven't found the drug "mix" that works for me but I will keep trying until I do because, in this short year, I've gotten worse. I've tried so many different medications and nothing is working. Then I get frustrated and depressed and stop taking them. And the pain gets overwhelming.

Humira isn't working so I'll be starting Remicade, and I'm looking at the Mayo clinic's report on it and wondering which is the lesser of two evils. RA with no medications or medications with all the side effects. I'm taking the medication because, at least in my case, this disease is progressing,and the right medication is supposed to get that under control.

I know, it's pretty scary.

I had a hard time understanding the 'damage to internal organs' as part of this RA disease, now that I had the 'mitral valve prolapse' in my heart I wonder if Ra did that? I took the mtx but who knows? They said it was inherited.....maybe.

sarah

Sarah, MVP probably is not caused by RA. I was born with mine. However, the click from the valve can get louder from the inflammation that RA can cause in your heart and make it easier for doctors to detect. Mine never goes undetected now.

RA can inflame the heart, lungs and eyes. So when you are considering what you are risking in not taking medications or at least treating the RA, keep in mind that this is a systemic disease. It can affect all the systems throughout your body. It is your immune system gone haywired. That's why every joint can hurt.

It is important that you listen to the doctor about high your SED rate is. That is the number that tells them the level of inflammation that is in your body. If this is a high number, then it must be addressed.

I've had all kinds of reactions from my meds. They took me off the MTX this year after several years with very little problems and for very serious reasons. Yet, I wouldn't have gone without the MTX because it did help me, probably saved my life.

Listen to what your doctor is saying, research so you know the facts and then determine how your body is reacting. Your answers will come.
I agree about finding the right combination of meds. It took me years,
then I had a setback with my pregnancy, and now I'm back to feeling
good.

So you do need to find what works for your body. We are all different.

Personally, I think I'd be dead without biologics.

Take care,I agree that we should be treating RA agressively but I feel that starting
out on the lowest dose and working up to the biologics is the best way to
go. I see so many people put on Enbrel and Remicade right away. How
do we know if maybe Plaquinil is all we need? Then, if that makes some
improvement but not all, add a 2nd DMARD. Do it within a time frame
that we can sort out side effects. When one is put on 6 meds at the get
go, how do you know which med is working and which is not and which is
causing which side effect. I think many people here have a serious case
of poly pharmacy which they can thank their doctors for. The
pharmacuetical companys love all of you and you should be on their xmas
card lists. Not me, I will stick to one and move on, one at a time. I also
feel that diet plays a huge role in this disease so I'm going the nutritional
route. I know some do not agree, but it is working for me. I work in a
place where I give papercups full of pills to patients and it makes me sick.
Many of these patients don't even know why they are taking these meds.
What a shame. We need to research and think for ourselves, advocate for
ourselves because trust me, if you think those drug companies care about
you, think again. They want your money. Your doctor gets wined and
dined for passing out their meds, I've seen it. It happens. Well, I gotta go
to work so I can pass out tons of meds to patients who have no idea why
they are taking them. Have a great night.

Thank you lorster!!! I get so mad when a med that is suppose to help me makes me sick and then the doctors answer to that it another pill!!! I think not!!!

I think we all at one time or another try going off the meds and/or switching them around and sometimes it helps and sometimes it doesn't. The meds made me so toxic that I had no choice but to go off them and I can't tell you how good I felt (but only for a short time). I do antibiotic therapy now and can say it is making a noticable difference in how I feel without making me feel crappy in the process. Good luck with your decision and be sure and tell the rheumy how you feel. Hugs and good vibes.

Hi Lorster - can you post details of the type of diet you follow. From what I have read diet can play a huge part in RA for some people but the information is so confusing. I have read no dairy (&was told this by a research dr. from the local hospital), no gluten, no nightshades - tried the no nightshades, didnt make any difference but maybe I didnt try long enough. Can you recommend any recipe books. I am veget. so it is hard giving up all of those products plus I get tired and cant be bothered cooking so dont eat properly. Am still tracking down the Sazon - tried a shop last week who didnt have it but gave me some suggestions as to where I might find it. When I start to flare badly my enthusiasm for trying out diets returns.
Kind regards,

I remember very well how devastated I was (for months) when I first was diagnosed with RA. I thought my life was over. The first RD I went to (I'll just call him Jerk), put me on Indocin, which caused me to have a serious seizure. For 36 hours I was unable to move or think clearly. When I finally had the presence of mind to call Jerk to report my reaction, his brilliant advice was simply to not take it anymore. So, I dropped him like a hot rock, and self medicated for a while. One day at my primary care physician's office when I was there for the flu, I just broke down and sobbed uncontrollably. Within an hour I had an appt with the best RD in the city, and I've been seeing her for 10 years now. She believes, and has convinced me that treating RA very agressively EARLY is very crucial to our overall best outcome. This is because it is a progressive disease, and the damage it causes is permanent. When I first started with her, I was on naproxen 1500 mg a day, and the max dose of methotrexate. I tried the oral dose of mtx as well as the weekly injections...both of which made me sick and nearly unable to function for 1.5 days afterward. I went on and off mtx for a few years, and stayed pretty true to the naproxen, because it helped with the pain. The problem with that was, while I was masking the pain with naproxen, RA was doing it's dirty deed to my fingers and wrists. When my X-rays a year and a half ago showed progressive disease and permanent damage, she strongly recommended I try enbrel, which I agreed to. It has been my miracle! I'm now only taking one injection a week, and feel better than I have in many years.

My whole point is that to go off meds completely with this disease is not the answer. Finding a balance between your comfort and the most effective meds for you is. If your RD isn't willing to try different approaches, or treat your disease aggressively, find another RD. If one medication doesn't work for you after 3 months, request another approach. There are several different types of medications and they work differently for everyone.

Most of all...hang in there and don't allow RA to rule your life. Find ways to simplify your daily living, and take time to rest. You will find a lot of good advice here.

Best of luck to you!