Methotrexate

Posted , 8 users are following.

My Rheumatologist has recommended I start Methotrexate. 

In reading about it, it seems to be one scary medication. Stuff like, 'do not store your bottle of Methotrexate with other medications' or   'anyone other than the patient handling the med needs to wear protective gloves' and so on. Furthermore regular follow up (eg. fortnightly) of LFT's because of impact on the liver. 

It's all got me thinking, will the advantages of this treatment outweigh the disadvantages?

Thoughts anyone?

 

0 likes, 11 replies

11 Replies

  • Posted

    Hi Megheart,

    I have no personal experience of taking methotrexate, though I know many people who post on these boards have found it very helpful. I'm sure they'll all come in with their positive experiences.

    My only experience is that of a 60-year-old colleague who has been taking it for RA for nearly 10 years. During that time her health has deteriorated seriously, with 5-6 attacks of bronchitis per year these days. She never seems to recover fully from the previous attack before the next one begins. The recent flu bug (which admittedly has been a particularly bad one for many of us) resulted in her being hospitalised for two weeks with pneumonia.

    She also has moderate signs of liver toxicity.

    I'm not saying these endless lung problems are automatically due to the damping-down effect of methotrexate on her immune system. She is also quite severely obese, which never helps if one has a tendency to chest infections.

    She recently told me that she would like to reduce the dose, with a view to potentially stopping it altogether, but that her rheumatologist has forbidden her to do this, and she is afraid to oppose him. I gave her several links to articles on low-dose naltrexone - which a couple of posters on here have mentioned - but she said he became very angry when she attempted to discuss this with him. (I'd change rheumatologists if I were in her place, but I realise not all of us are able to make this kind of decision.)

    I can only reiterate that I know this is not everyone's experience, nor is it my own personal experience. I have, however, watched this courageous lady's health deteriorate steadily for the five years I have worked alongside her.

    I think we all have to do our own research and make our own decisions - which I know you are perfectly capable of.

    Good luck with whatever you decide to do.

    Lily

  • Posted

    Hi there-

    I have been taking taking prednisone for 3 years and last year, my Rheumatologist prescribed methotrexate as a steroid sparing agent, in order to reduce my prednisone dosage - i was taking 6 mg at the time.  In summary, the drug did not work for me.  I was very bothered by the side effects, especially on my stomach, despite taking the injection form of methotrexate as well as a "folic" acid supplement (leukovorin) ... both of which are supposed to reduce side effects.  In addition, it did not significantly reduce my pain & discomfort.  Therefore,  after 6 months of giving it a try, I stopped taking it.  However, I do know several of my friends for whom the drug worked very effectively, with few side effects.  Our bodies are all so different, its hard to tell what will work for some... I know that in most cases, our Doctors monitor the effects of these drugs, esp liver functioning - no drug is  without risk, that is certain.  But uncontrolled inflammation carries risk also, as all of here appreciate.  Knowing what I know about methotrexate, I am glad that I gave it a try for 6 months.  Good luck with your decision.

  • Posted

    People sometomes psych themselves out of drugs because literally 10 people out of 1,000 get a headache when using them, but ,,, Can't be stored with other meds and non-users must glove up to handle??? That is terrifying and would give me pause.

    Like Lily I know there are folks here who use it. I would have to give it a pass as all the acetaminophen I use keeps back & forth on the LFTs, and the ibuprofen doesn't help on those either.

    Whether it's this or something else, I hope there's something to help you.

  • Posted

    I was given this for my POLYMYOSITIS.  I was taking 50mg once a week I took it for 5 weeks then developed a hard time breathing. I was place in hospital  I had pneumococcal  pneumonia. It was a close one for me. I have a niece that takes it for yrs she has Dermatology Nothing with her So it is up to the person.   .
  • Posted

    I only took Methotrexate for a few weeks and then I stopped it at my doctor's recommendation and I was very happy to do that. It can cause sores in your mouth and I got them but more concerning was my liver enzymes were rising every time she tested me. Several months later I discovered through a CT-scan that I have a fatty liver. But I can't blame the methotrexate for ruining my liver entirely and that's because I had been taking Percocet for many years and that has Tylenol in it which can screw up your liver. Obviously I stop taking Percocet as well.

  • Posted

    Don't take it. Have you looked into people who have put all these conditions into remission by changing diet and lifestyle?

    There is evidence to suggest these are caused because our environment is toxic. The human body is not designed to run on pesticides, heavy metals, stress, caffiene etc.

    Have you google Serena Williams. Have you explored nutrition? 

    The whole drugs based industry is a biased scam. If there is no cure for auto immune diseases and they are genetic and the only thing they can do is toxify your body with drugs, then why are there countless people who have put this into remission through diet.

    My advice too as well, if you start eating really healthy, lots of greens etc, make sure they are organic, or you could make yourself worse with all the pesticides.

    I'm not some crazy alternative by the way, I'm an educated man, and it's only a matter of time before this nonsense collapses and the truth comes out.

    My mother and my grandmother are not in good places after taking those drugs. I really would look into natural solutions of healing. And heal your spirit too.

    Thanks.

    Nick

    • Posted

      Hi Nick,

      I'm inclined to agree with you on the topic of drugs - and I'm a former nurse! I think it's become far too much of a money-spinning industry.

      On the other hand, a healthy lifestyle won't cure everything, though it's certainly a useful way to manage chronic conditions. Some medication is essential though. Try treating meningococcal meningitis without antibiotics for example!

      I'm fortunate in that I haven't had to resort to heavy medication yet - just L-thyroxine to top up my underactive thyroid and a steroid inhaler to treat late-onset asthma which was starting to threaten my lungs. I eat very healthily - plenty of green vegetables, oily fish, no junk foods etc. - and, like you, I believe that this has been partly responsible for the fact that my Sjogren's hasn't advanced as quickly as it has in some people. However, a lot of that is due to the late age of onset too - about 50 in my case. People in whom it starts earlier are not going to be able to control the disease completely with healthy living.

      I don't seek out organic fruit and vegetables, mainly for cost reasons. I'm living on a very modest pension, eked out by a steady trickle from my life savings. If I were to switch to organic vegetables, wild salmon etc. I'd have to cut down drastically on the amounts of them I eat. Would that be a good idea? And yes, I know there are farmers' markets and so on and so forth. But they're all out in the countryside and I don't own a car. In any case, I'm quite amused by some of my environmentally-conscious friends who reckon they're somehow saving the planet by driving 50-odd miles around the countryside every Saturday so they can visit all the best "organic" markets.

      And how "organic" are organic foods anyway? A study was done on this in Belgium about 20 years ago. It turned out that a lot of the vegetables being sold as "organic" weren't anyway - which I know has been a problem in many other countries. Worse still, even those that had been grown in correct organic conditions turned out to contain pesticides, heavy metals etc., that had been picked up from the air and the soil they were grown in. The only difference was that they contained less of them than non-organic products.

      There's also the problem of GM contamination now as well. Seeds from genetically modified crops blow around or are carried by birds or insects to organic crops.

      I totally agree with you that diet and mental attitude are crucial in managing illness. However, we can no longer totally separate ourselves from the potentially toxic environment in which we live. That ship sailed a couple of hundred years ago, at the start of the Industrial Revolution.

    • Posted

      Hey lily,

      Hope I didn't invalidate you. It was a bit ranty that post. 

      Yes I completely agree. It is almost impossible and hugely expensive to shift to organic and get rid of these pollutants, almost but not impossible. 

      However, I believe it to be the cause, and yes, the industrial revolution I think may well to be to blame, and maybe there is a lesson in this for humanity. 

      In the meantime. what can we personally do? I think that is down to the individual. The rise of autoimmune conditions is increasing in correlation with the toxicity of our planet and our minds. 

      I'm hopefully not being immature here, my last post was a little annoyed as I've seen what the drugs can do, and I have a strong belief that this is down to environmental pollution, farming and stress. So to treat with drugs and say that's it's 100% genetic is ridiculous. Genetic illnesses tend to be rare and there are a history of them being so for many 100's of years. These are going through the roof in recent years so it makes you question why?

      I seek to share info not dictate. I really wish you well. There are ways of going organic. you can bulk buy. There are detox protocols. New Zealand lamb for instance is not registered organic but is pretty safe due to how it is farmed. You can bulk buy beans and seeds. And if you have a garden you can grow enough leafy greens for smoothies. It is a huge lifestyle shift. It is really difficult. I struggle too. 

      You're right, it's finding a balance, you don't want to cause yourself anxiety. It's a bizarre age to be alive. it's going to take time to sort it all out. But we're all in this together! 

      I think good food and health is a birth right. I want to see it for all.

      Can I just add that if you do decide to go on a detox protocol, to eat lots of lambs liver.. organic or newzealand as you'll have to replace a lot of minerals.

    • Posted

      With apologies to Megheart, who asked for specific input.

      Nick, how is it that you know that genetic illnesses were rare until recently? Genetics has come into its own as a science in Lily's & my lifetime. Cro-magnons & Neanderthals, right on up thru scientist-slaughtering popes had access to DNA, RNA & gene-splicing? Tho Sjogren's was only "discovered" 90 yrs ago in the West, the ancient Chinese knew about it long before the industrial revolution. Lily is right about the evils flowing from the IR, else we wouldn't now be in climate change.

      One of the things that is often overlooked by everyone, and especially when talking about diseases that affect primarily or only women, is how many women over time died due to complications from childbirth before age 35. To look at US birth-death records in the 1800s and see how many men had 3-5 wives is shocking. They weren't divorcing those women. The women died. If it wasn't during or right after childbirth, in the western US a fair number were worked to death. ALL food was organic, 100%, and away from the eastern cities the water was clean, mostly right up into the 1960s. Plenty of people had AI diseases: can you say arthritis? Rheumatism? If endometriosis is an AI, it was there, too.

      Diagnosis, however, was almost non-existent, even in the few doctors that were around. Treatment? I laugh. People didn't even know what germs were, much less genetics.

      Another thing skewing comparisons are childhood diseases and things like flu, typhus, cholera, etc., that wiped out huge swaths of people of all ages. There were plenty of people living to age 75-100, but they had the toughest makeup combined with good luck. When society achieved the means of saving children from congenital issues & measles, etc., no one looked around and said "Let's think about this. If their constitution isn't sufficient for them to live past age 5 without a million dollars being poured into them in surgeries, what will it do to the gene pool to force them to live and then let them breed defective hearts, etc., into the population?" So of course genetic diseases are on the rise: we know how to diagnose them AND we work hard to propagate them by saving kids who should've been allowed to die naturally. Treating cancer in children is nuts unless you do not mind the long-term consequences, i.e., the costs of both treatment resources and perpetuating possible genetic defects in the pool. If you haven't guessed, why yes, I am the daughter of a farmer/rancher and quite capable of recognizing bad breeding stock. (Given my congenital & other issues, am thankful that I repeatedly & always made the choice not to pass on my genes.)

      I sometimes splurge for certain fruits if organic & they're on sale. I'm thrilled that money is no object for you tho I even if i were a billionaire I'd have some qualms about having lamb come all the way around the world just for me. I know NZ lamb is great, I eat enough of it when I visit Canada. It is also more apt to be lamb than a lot of "lamb" in the US. But liver??? I always hoot when someone suggests any kind of liver as a detox since the liver is what collects & retains more toxins than most other animal parts we eat. Brain might be worse but most Americans refuse to touch brains from any critter, and I am with them.

      Lily's right about the organic label. Here we have some certification methods, some of which are reliable. I refuse to trust Mexican produce as organic & try not to eat any fruit/veg from there unless I am in country. Spent a lot of time there while growing up and never saw a speck of indoor plumbing outside of good-sized towns. Too much of the country still uses privies & farmers use wildly unsafe pesticides (as opposed, lol, to those used by American Big Agro) for me to buy their produce while living in Texas.

      Pesticides do travel across fields. Lily is right about this also. They travel a long way. There's a town northeast of here, traditionally a farming community. As of 10 yrs ago, at least 25% of folks over 50 had cancer whether they grew up in the town or on the farms. The pesticides yes kill us, but they also cross into backyard organic farms. In the States, you can't claim that much food is uncontaminated no matter what the labels say. We now know that ALL rice grown anywhere in the US, organic and other, is so contaminated with mercury that it shouldn't be eaten more than twice a week. Let that soak in: all organic rice grown in the US is full of mercury. It was on network news years ago and nothing has changed.

      So please do not lecture us about organics. I concede that berries, apples & stone fruit are some of the biggest pesticide collectors which is why if organics are cheap enough in those, I buy them. Right now we're all avoiding what we call Romaine lettuce. Organic & otherwise, it's tainted w/e. coli. We are told to eat it only if we grew it.

      I am no longer capable of growing things in the ground. I still usually grow tomatoes in pots and I always have herbs growing in pots, including tons of parsley for particular caterpillars which munch away happily as I type. Even those are contaminated by pollution. And other people's sprays: last year I had an 8 week period without any bees, butterflies, etc., because the ninnies next door hired a commercial sprayer for mosquitoes. Mosquitoes were back immediately because the idiots still grow a huge stand of non-native bamboo, but every yard around them, at least 8, was contaminated with some dangerous spray.

      Bottom line? Do what works for you and try not to worry about the rest. And recognize that most medicines arise from life on this planet, directly from plants and funguses.

      If anyone wants to talk more about this please start your own thread.

      Thank you, Megheart, for your patience.

  • Posted

    Thank you Lily, Connie, Aitarg, Diane, Amkoffee and Nick for each of your responses.

    Regarding the heightened risk of infection, that does concern me, Lily. My Bronchiectasis is stable most of the time but when I get a chest infection that becomes seriously scary. I would need to be very vigilant about impending signs of infection.

    Connie, that is interesting what you said about the effect on your stomach despite having an injectable form of Methotrexate. My stomach is already a source of angst with nausea and epigastric fullness from Gastroparesis. My Rheumatologist did assure me that she would stop it at any time that my LFT's were rising and that I could stop it should I get any symptoms that i was not happy with.

    ?Aitarg. For come reason I generally have very few side effects from medications but one never knows when it will happen.

    Diane, 50 mgs of Mtx seems like a high dose for AI conditions, although I'm obviously no expert as to optimal dosing - lol. One directive I read seems to suggest that up to 25 mgs Mtx weekly is standard for AI conditions. Sorry to hear though that you became so ill so soon after starting it. That was awful!

    Amkoffee. Mouth sores are something I have never had so if I developed them while on Mtx it would be very much a case of cause and effect for me.

    Nick. I am interested too as to why people BECOME sick when they are on a very good diet...and it does happen, albeit more rarely. In the same vein, I have noticed a seemingly disproportionate number of cases of marathon runners who get Addison's Disease.....and this was before the current 'energy drink' craze.

    Water quality too is possibly as important as food. Most of the water we drink is 'dead' water. None of the minerals and other good things in it that used to come in drinking water from a fresh mountain stream or subterranean spring.

    Unfortunately I do have a genetic condition (on chromosone 6) which has required me to be dependant on corticosteroids and mineralocorticoids all my life.......and no it is not a de novo mutation but an autosomal recessive mutation, one mutated gene passed down by each parent, both of whom were themselves conceived when food was organic and lifestyles were less stressful. 

    So for me, I am one of those people whom Aitarg refers to, who would have died young if not for modern medicine - like a lot of us!

    Again thank you for your responses.

  • Posted

    See if you need this drug take it  Of course your Dr needs to know all you history. Just be aware of what to look for You are a well educated person so you know what you need to do. I hope everything goes well. I just got a diagnosis with Sjogren's Syndrome I have to fight till I got 4 out of 7 Dr's they said yes SS Don't like the diagnosis I am still feeling it all but I knew something wrong my Rheumo kept saying no no. So anyway just fight you know your body more than anyone

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