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desperate 6 weeks in on methotrexate worse than ever been R/A
Enbrel is the only reason why I live a completely independent life as an adult, have a promising, successful career ahead of me, am financially self-sufficient, and can work harder and longer than most "normal" healthy people.It is nothing less than a CRIME that some people in rich countries do not have access to this God-given miracle (FYI, I'm a researcher at an ivy-league school, so don't give me crap about this) simply because they cannot afford it.
I have a very aggressiveness form of RA and went from a very fit person to someone who couldn't shower herself or cut up food. Was on sulfazaladene, methotrexate, steroid injections etc. nothing worked, couldn't stand pain. Very, very lucky because I qualified for anti-TNF, Humira, which gave me my life back. I can do most things although both hands have drifted and I have pain in both shoulders but I can walk which is the best thing ever. I am sorry that Humira has not the same affect for everyone because after six years I have had no side effects.
Having got progressively worse on methotrexate, voltarol, lefluminide, sulpha....... i was finally admitted to hospital for a week unable to walk and having lost 4 stone through muscle loss (bizarely still 30% body fat even though I didn't have the body energy to eat). Couldn't walk unaided, couldn't get up or off bed in less than 10 minutes, pretty grim. My mum was a guinea pig for humira and it got her out of a wheelchair and on to a cruise. she lived for two years and it gave her the will to live again. Unfortunately all the other drugs had damaged her heart and arteries and various other organs. She died of a heart attack and then organ failure after a test to see how her heart was doing..not well.However, the suggestion of going on HUMIRA was to put me on this. I wouldn't agree until i was finally hospitalised and quite frankly I had nothing to lose. That was two years ago. it took a while to get my muscles back to anything approaching normality but this year I have been skiing (for three hours over a week - but hey I finally tried skiing), From being a keen tennis and squash player twenty years ago before the RA started I have not had the strength nor the inclination to cope with the pain of playing, but yesterday I played 8 games. Amazing. Tabletennis is my favourite now as itis low impact but i have to move. I can walk nearly five miles (shattered after mind you), have worn two inch heels!!!!!! love it, have run for fifty yards on the beach barefoot and been on a horse (core body muscles have not come back too well yet). Also have had salsa lessons.I cannot believe any of this is true and am terrified of going back to what I was like three years ago and am now terrified of losing the right to this medication.In the past I tried acupuncture (made symptoms worse), bowen and massage (helped hugely but not cured), diet (makes a difference even now), fasting (always better if i eat nothing but not recommended for long periods), chinese herbs (I found a great doctor and there were some improvements - but not as much improvement as I have now), malaria tablets for overseas travel always seemed to agree with me and gave me extra energy and ability to move (but I had always had a huge downer on return to cold UK when I stopped taking the tablets). I do have a little dry skin and exzema problem which may be the preservative in the two weekly injection liquid but it is not a huge problem. Otherwise I have energy and the ability to move. There is still some RA going on as my knuckles and joints in my fingers can get swollen and there is a small sollen area in my left ankle but in the great scheme of things - I am now going in the right direction. I am sure that some vitamin, mineral or trace element might help (but I have tried many in my search for a cure) and there are difinitely now food/ food combinations that cause me to block and feel leaden but I am still investigating. Hang on in everyone - there will be a cure eventually, we just need to keep going.
My doctor wanted me to take Methotrexate, but I had great resistance for these kind of medicine. I only accepted one injection of Prednisone in one of my wrists since this was the worst joint. For overall treatment I wanted to try alternative methods first, so the past year I've tried acupuncture and feet reflex therapy. Besides that I changed my diet, no more preservatives, additions, etc. Very little alcohol and meat. Now I'm one year further and my doctor stated the RA is in remission without the use of medication. Just wanted to let you know that it is possible, change some things in your life and keep the fait in your body and mind!
Will not use immunosuppressants again. Have done much research on Minocycline, low dose naltrexone and high power laser therapy. Have just started using naltrexone and laser. Hopefully have found doc who will prescribe Doxyclycline (Minocycline causes skin problems) according to Roadback Foundation website www.roadback.org. So disappointing that rheumatologists are in bed with Big Pharma and are NOT AT ALL open to treatments that REALLY have the potential for long term improvements with very limited side effects
I have on MTX cimzia. It has not worked. I just recieved LDN. MY BIG QUESTION IS HOW MUCH SHOULD i START OUT ON. i HAVE HAD PEOPLE TELL ME 1.5 TO 4.5.i HAVE BEEN UNUABLE TO DO ANYTHINY FOR OVER A MONTH. i PRAY THIS WILL BE THE DRUG FOR ME....IF Anyone has any advice it would be great.Kym H
AlbertoI have just started LDN. It would be great to hear more about other's experience with LDN. How long to notice a difference? side effects? Etc.I took my first dose (4.5mg) yesterday (12/2/11). It was incredible. There were times the pain was so low that I though I was cured! I could not sleep at all (maybe anxiety!). My RA is very aggressive. I am on MTX and Humira. The pain is manageable (say a 4 on a 10 scale). Hopefully LDN will do the final trick..
JlJack is on LDN since April 2009. How long did he take it before it began to work. I have taken it for about 3 weeks.
Re: Limbrel — no side effects and comes from plant material. helping reduce hand stiffness and pain in the morning so far. haven't been on it very long.
dedeRe: Prednisone — I was crippled with joint pain, diagnosed as "palindromic rheumatism" - finally put on 10mg of prednisone, which provided a miracle of relief. I felt almost normal again after 3 mos of debilitating agony. now I'm down to 7 mg and can't seem to get any lower. when I go to 6.5 I start to hurt all over again. my next hope is to try LDN, low dose naltroxen - I;ve heard it's wonderful for immune disorders.
jljackRe: Joint pain — Started in my feet, now in most major joints and in my hands. Nearly constant pain, mostly relieved by ibuprophen. Swelling occurs about 50% of the time. Also some relief from soaking in warm water.
Re: Low Dose Naltrexone (LDN) — I now have no RA symptoms having started low dose naltrexone in April 2009
BettydRe: Methotrexate (Rheumatrex, Trexall) — After one dose, my hands and legs were remarkably worse. I was unable to go to work or tie my shoes.
BettydRe: Enbrel (Etanercept) — I developed a severe itchy rash that kept coming back.
buzzy12345Re: Methotrexate (Rheumatrex, Trexall) — This medication can trigger something in your brain to turn on a vomit response. Once you hit that point, you cannot take this drug any longer. The trick is to keep the lowest possible dosage that works for your body.
Source: a rheumatologist at the National Juvenile Arthritis Conference 2009 - Houston, TX
shimoyakeRe: Prednisone — worked but very severe side-effects.
vargaRe: Leflunomide (Arava) — Do not think that this did much for my joints, made me loose a little weight.
vargaRe: Cortisol — Gave me more pain after the injection, but helped calm the swelling down substantially for a while.
vargaRe: Minocycline (Dynacin, Minocin) — Did show some improvement, but not enough. Also cleared up acne and gave me a mild sun activated rash.
vargaRe: Enbrel (Etanercept) — Did show some improvement, but not enough.
vargaRe: Adalimumab (Humira) — Could tell it was doing something, because a few days before I took it my symptoms would get a little worse. Did not prevent flares or do much overall. Also gave me tingling in my arms, legs, hands and feet- which has been going away after I stopped taking it.
vargaRe: Removal of the joint lining (Synovectomy) — Knee was a lot better after surgery, but eventually the joint swelled up again.
kristenRe: Cortisol — Though claimed for its wonderfulness, the injection didn't help the pain of my flare up at all.
kristenRe: Exercise — Along with my healthy diet, I was also exercised vigorously about 4 times a week. Since my problem area is my wrists, I could easily avoid using them for cardio activity. However, when my full body flare occurred, I had a hard enough time walking down stairs or even sitting up for awhile. So I was incapable of performing any type of exercise due to the pain. This flare up occurred after I had been exercising regularly for 6 months so I feel that the exercising in no way prevented (or caused) the flareup. For me, exercising seems coincidental for helping my RA symptoms.
kristenRe: Enbrel (Etanercept) — I love Enbrel. Though better than iv infusions, the weekly shots are difficult for me, and I have yet been capable of administering them myself. I have taken MANY nsaids over the years, which never seemed to help at all. I'm also on methotrexate, which helped more than nsaids, but I still endured minor pain with simple tasks (ex. turning ignition of car, writing, using a mouse). Within one week of using Enbrel I was capable of performing simple tasks with ease, and within a couple of weeks, I was able to preform even more difficult straining tasks without wrist pain. I have been living pain free and "normal" for 4 months now.
kristenRe: Protect joints — I wore wrists splints for several months. While wearing the splints kept me from moving my wrists to cause pain, the immobility would cause painful stiffness. However, if avoiding painful activities (i.e. jar opening, heavy lifting) is considered protecting my joints, then yes, that obviously helps.
kristenRe: Heat — may not always relieve pain, but heat temporarily makes my wrists feel better
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