Choosing not to take medication

Big Brother !! 

You must have said something really good!

 

Pepper - here's the bad news doctors don't like to tell you because they don't want to scare you to death. Left untreated, RA is a fatal disease. Any damage it is doing to you right now cannot be undone. It does not stop with your joints. It will go after your heart and lungs quite happily and in rare cases, will go for the eyes, liver and brain. Heart/lung damage is what killed RA patients prior to 1988 when Methotrexate first became available. Until then, RA was a death sentence. Even today, RA patients are still at higher risk of heart attacks because constant bouts of inflammation 'furs up' the arteries, making it easier for plaque to build up inside them. Yes, the drugs are powerful and they have nasty side effects. But the side effect of untreated RA is a wooden box at the bottom of a six foot hole. It has no respect for heroes. Those who take the pain and 'soldier on' are the ones it cuts down first. Do not mess with this thing!!!

Hi, I do feel Its Imp ti take treatment medicatikn, but will not take methotrexate due to my experiences with this, and a high number of other testimonies.

Interesting comments about methotrexate. I can't take it either, played merry hell with my kidneys. I'm on leflunamide and Humira.

Methotrexate is the 'go to' drug for doctors though because it works well for a high proportion of RA patients, its cheap and they are familiar with managing it. Some of my RA mates are in remission with Methotrexate. One is in her 90s and has been taking it for 30 years!!!

It all comes down to what works for you. If something is NOT working, get back to your doctor asap.

I'm in New Zealand. Here, all medical care is government funded. Before a patient can be put onto an expensive drug, the doctor has to show that the less expensive ones haven't worked. Almost everyone starts on Methotrexate usually in combination with prednisone. Next up are the anti-malerial drugs, sulphursalazine and hydroxychlorquine. Then its leflunamide, perhaps combined with Humira. Finally there's something that cost $1000 a shot but thats for fairly extreme cases.

When I was put onto Humira at $450 a shot I felt a bit guilty being such a cost to the dear old tax payer. The nurse told me that there were 248 other patients in my area on this drug.

NZ population is about 4 000 000. There's about 40 000 with RA. The population in this part of the country is about 400 000, so 4000 locally with RA. (nice easy maths!) If just 248 of us are on the second most expensive stuff then most of the others are on some combination of the cheaper drugs. My personal experience bares this out. Amongst my friends and aquaintances there are 6 of us with rheumatic conditions - 1 lupus, 1 ankylosing spondilitis, 4 RA. Of those, 4 are sucessfully taking methotrexate, alone or in combination, and have been for some time, up to 30 years in one case.

I have noticed in comments from some overseas people, that they are given a 'loading dose' to get the blood levels up quickly. This isn't done here. I got the maintenance dose from the start, (15mg) with prednisone holding the fort until the methotrexate began to work. I was also given folic acid as methotrexate hinders its absorbtion. Again, I haven't heard much mention of overseas patients being given this supplement. I wonder if these issues are part of the probelm for people taking this drug.

I had blood tests every two weeks. I felt well and the RA went into remission but after a year, my kidneys had the symptoms of stage 3 kidneys disease, so I started moving up the drugs ladder. The anti-malerials did absolutely nothing, leflunamide helped and now I'm on a combination of leflunamide and Humira.

Another possible issue is the acid forming western diet. An acidic body does not handle the breakdown products of methotrexate as well as an alkaline one does. This is probably why my kidneys got clogged up. I didn't discover this until later but its well worth mentioning here.

 

I am patient with RA ...i feel pain in hands and uper spinal cord between shoulder and in chest..i used al medicines but till yet suffering aged 30...please suggest me ...tabs starcox ..HCQ and anti RA tabs ...

Hello, l decided five days ago to stop my RA medication. I have been taking Xaljanz but do not like the reviews on this relatively new medication.  I was diagnosed about five years ago and have tried about 9 different RA meds.

Hi, I was diagnosed with RA.  I too felt that I shouldn't take the medications I was prescribed and I didn't. Fast forward, I am symptom free. I would recommend you see a functional medicine doctor.  They are MD.s but with training in extensive diagnostic assessment of underlying problems.  I would also recommend you subscribe to Dr. Mark Hyman's e-subscription to House Call to get weekly information on medical care, diet and other things that may help you get to the root of you medical problem. Rheumatologist  and other specialist are quick to prescribe these quick and harmful answers.   

Hi,

I'm in a remission since one and a half year on "a non conventional treatment" as my rheumy calls it.

I still have RA of course.

http://mybluepillbox.com/rheumatoid-arthritis-journey

Before that, after one year taking Methotrexate and Prednisone I stopped all medication for a period of about 2 months. The conclusion in my case, is no management means I have to stay in bed with a lot of pain and fatigue. This is an old post, I hope you are doing alright now and that you have found your way in the difficulties of coping with a chronic condition. All best !

Hi, I only just came across this informative forum.

i have been diagnosed with RA for many years now, since in my 30’s, now in my 50’s,  taking a concoction of meds, including Methotrexate, ( I give myself a weekly injection, it’s seems to be causing less nausea that way.) Hydrocloraquine, and Remicade, a six weekly IV infusion.(biologic). With these I have to take Lequavorin and folic acid I hate taking so many immune suppressors but it has been helping. I think I am finally (I hope) in remission. I came across this forum when looking for advice regarding stopping my medicines. Being in the medical profession I know I shouldn’t but it’s so tempting. I know RA continues to do its dirty deed even when you are feeling good. 

My labs are always normal, thank goodness and i am a little afraid of having a flare up if I come off the meds. (My rheumatologist advises against it, so I probably won’t).

i do want to say though that as was mentioned in an earlier post, the ramifications of RA isn’t just about joints, (although I have had five joint replacements) it does affect major organs. My father who suffered his entire adult life with RA died from complications of the disease. Myocarditis. Inflammation of the heart. 

I have never really looked into special diets or alternative medicines as I am very skeptical. Having said that I don’t knock anything that helps people with RA

It doesn’t need to be a death sentence like it used to be, for that I am truly thankful. I live in the USA so luckily with my insurance I am able to get the medications I need paying only a fraction of the cost.  

I hope everyone is feeling well and able to live life as fully as possible. I think having the support from others who understand what’s going on, is invaluable.