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Methotrexate

I was on methotrexate for three years. Felt slightly better but they also tried various biological drugs. The majority of these left me very unwell and caused meningitis on one occasion. I thought I was going to die. Then I went for a mammogram and was diagnosed with breast cancer. All my RA drugs stopped as I needed surgery. Thankfully I caught it very early and didn’t require chemotherapy. I believe the medication contributed to my cancer. I will not be taking methotrexate or biological drugs again. I’m now on various supplements and follow a proper diet. Everyone can’t believe how well I look. I feel better but am still on a small dose of steroids. Investigate the diet and supplements and try to get off the medication. I really don’t think the doctors give a damn. They just keep hitting you with these very serious drugs which I believe could kill you.

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You're spot on , I've been on Methetrexate 3 years , Benepali 1 year in August and Sulfazalasine again and I'm still not controlled and just as bad as I was 3years ago when i started and last Monday night I had to call an ambulance out as I couldn't breathe with severe pain in my chest and every joint in my body, my heart was clear and they said it was down to my RA, so I've got my appointment on Monday and I'm coming off all the toxic drugs and doing what you are doing plus I'm starting cannabis oil and I think I will feel much better, also last year I got my Gallbladder out and had 8 perforated abscesses on it plus I had sepsis and an E. coli bug which nearly killed me and it was all down to the Methetrexate and as you rightly say they just throw drugs at you to get you out the door, well I'm ready for them and if I get any grief I will be asking for another rheumatologist, hope things keep going well for you xxx

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How do u know your gall bladder infections were due to MTX? Very interested as I'm supposed to take it.

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My Consultant that done the operation was 99% sure it was the Methetrexate that caused them and I tend to agree, I told the rheumatologist and she said he was probably right but said it's also a balancing act, it's a terrible disease to get under control as everybody's different

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Yes I Agee fully with you I'm on low dose steroid stopped ra drugs a while ago had infections all the time felt so ill on mtx and bio drugs not goin bk on them as I've felt fine just a few flairs and being fatigue I can cope and feel so much better what is goin on with these drugs ??????

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Great. So pleased your doing it too. These drugs are lethal. I’m sure there are people who can tolerate them but I’m convinced they caused my cancer but thank god my mammogram came at the right time and caught it 😊

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I guess everyone is different and we all react differently to the drugs offered. I've had reactions to several DMARD's, but Methotrexate has transformed my life. After being ill for over 14 months it has given me some quality of life, still a way to go yet, but not to have permenant, debilitating, extreme brain fog has been like been given a second chance. The joints are improving, but a way to go yet. We all need to use what is best for us as individuals.

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Very glad Mtx is suiting you so well.

I had an excellent quality of life for 7 years on Mtx. I have never seen any figures but if a large percentage of people who take it were as badly affected as Nsmith & popsmith it surely wouldn't still be the most prescribed Dmard for RA?

Unfortunately rheumatologists aren't psychic & apart from doing the tests available to judge how each of their patients will react to Mtx it's very much try-it-and-see........as it is with all other Dmards.

Hope you continue to to improve taking Mtx.

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There are risks to mtx but also serious risks to unchecked inflammation. I've been on mtx about 2 years and it made a big difference, about a year of feeling gradually better and then 6 months total remission. I started at a low dose, injecting instead of tablets and had zero side effects,.

Recently though I had to increase, I got the flu & my symptoms came back. I had terrible side effects from the larger dose (nausea, general bad feeling, depression) - We dropped the dose again maybe 15% and I within a week I'm OK again. So, dose matters!!!

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Yes it does, I'm so glad you are back on track.

Nothing dull about RD drugs is there?

And as I have found out today, if you are having any drug via an infusion the speed matters too.....I had an infusion dosed at faster than I could cope with & felt really odd for a couple of hours...until questioned the speed & it was reduced.

I usually feel absolutely fine on the evening of infusion day, & I am all calmed down now, but I have gone straight to bed this evening & I'm hoping a good nights sleep will result in me feeling fine tomorrow morning.

Fingers crossed!

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Your story is the reason I keep wanting to try MTX but I'm terrified.

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My best friend from school days had RA like me. She had a laminated page of A4 with all the meds she was taking, she also had asthma like me too. I've always tried to take minimum meds, eat very healthily,exercise, have reflexology. I tried to persuade her re diet but she wasn't impressed. Sadly she died at 60 and the doctors actually said thst all the side effects of all the drugs had contributed to her lungs giving up.

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That’s what I thought would happen to me but I decided to act on it and I feel so much better. The ironic thing is that if I hadn’t had breast cancer and had to give up all my ra drugs I wouldn’t have realised what they were doing to me. Thankfully it was caught early. Hopefully I will keep well. I know they seem to give you your life back for some people but the side effects are lethal.

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Wishing you all the best. RA is challenging enough but then you have to do a lot of research to check what is best for you and that too is challenging when energy levels vary so much.

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Reason I don't want to take MTX. Sorry u lost your friend so young. I'm 60 and still feel 20 even with all joint pain.

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That's great! How do you manage that? I'm 65 but feel about late 40s most days, some days mid 70s! I taught an Egyptian dr in the 90s and he said he wouldn't put his mother or sister on MTX because it was so toxic and yet drs here always go for that before anyth else!

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Yes I'm terrified of MTX but also can't cope with joint pain anymore. What to do?

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I completely understand what your saying. I take cannabis oil as well. I take the organic CBD oil and it really help. The supplements are expensive and the diet etc. But it’s worth it just to feel human again. My husband said I looked grey and zombie like when I took it. I convinced that if I had kep on all those drugs I would have been dead. My body simply couldn’t handle it. I changed my consultant because the last one was very rude and cheeky with me when I ended up in A&E with a really bad flare up. Just say your going to try going without the drugs and see how it goes. I still need prednisolone 5 mg each day and recently had both knees drained and injected which really helped! Good luck

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The pharmaceutical companies don’t care and either does the health service because they are all making millions of thousands of pounds. The government don’t seem to care that these drugs are costing so much because they all must be making more money from it. It scares me to think of what we are given with no real explanation on what it is. I’ve never had any rheumatologist sit down and really discuss my condition because they don’t have time. I’ve had to educate myself and it’s all trial and error 😩

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Exactly the way I feel.

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Thankyou yes it is difficult and it's what suits you it's your life your body , I just think it's such a shock when you get diagnosis for ra and you will try anything for the symptoms nobody really can take it all in an it just seems such a rush all these drugs are very leathal and I think you should be told instead of being sent on your way with a couple of leaflets and it's so expensive you just think wow it's got to be good stuff 🙀😤😩

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Same story with me! I was very ill on methotrexate quite shortly after got stage 3 colon cancer which I believe the Methotrexate caused.

I do IV vitamin C weekly now amongst a whole load of other natural stuff and like you am doing quite well.

Best wishes

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Are you not on chemo for your stage colon cancer?

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Hi, thanks for your question.

I had half my large bowel removed, a left hemicolectomy. The Cancer had not spread to other organs, but I had lymphovascular invasion and was lymph node positive.

I refused adjuvant chemotherapy as I was terrified after my bad experience with methotrexate.

That was 2 years ago I continue to have precancerous polyps in regular colonoscopies but these are removed.

So far the weekly IV vitamin C is making me feel good and there is no evidence of metastasic cancer on scans.

Hope that answers your question, best wishes to you.

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I'm afraid I cannot agree with the tone of this thread. Everyone is entitled to their own way of tackling this wreched disease, but to imply that rheumatologist and doctors deliberately give us drugs that will cause us damage without caring about our long-term welfare is horrifying.

Some people mercifully can have RD which " burns out" quite quickly. But the majority of us are faced with a disease that untreated will inevitably lead to crippling deformities, uncontrolled pain and life shortening secondary health issues.

Nowadays we are incredibly lucky to have access to an increasingly effective range of drugs that prevent the worst effects, so no rheumatology wards full of people with twisted deformed limbs. Of course these drugs can have side effects.....read the patient leaflet fo the common paracetamol. If we are well monitored, well informed, and aware of our own bodies, there is every chance that our condition will improve eventually, but probably after a few wrong turns!

Often this is a long journey, and there can be a lot of trial and error, everyone has their own particular variety of disease......it's not a case of one coat fits all. We can help the process by learning as much as we can about the condition, including using this site!, so that the treatment process can become a more equal partnership.

I also get angry, but it's the condition that I'm angry about, not the treatment, or the people trying to help me. I am extremely fortunate to have a fantastic rheumatology unit behind me, and I know other people aren't as lucky. In that situation knowledge is power. RD is the enemy, not the drugs.

For anyone that is newly diagnosed, please remember that on a site like this, people having problems are most likely to be posting, to get support and help, as opposed to the majority, who have found the best treatment for themselves and are just getting on with their lives.

I haven't found my best treatment yet, but I am ready to try another option. RD is my enemy, not my medication, even when it turns out to be the wrong one.

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Hatshepsut, absolutely agree with your comments, no one wants to take unnecessary drugs of any type, but for some of us there is little option. Or the options are extreme illness and being bedridden or give the drugs a go and get some quality if life. That's an individual choice, I've made mine and it is to give the drugs a go.

The side effects of the drugs can be awful, but trying different drugs usually results in a better quality of life for many. I read somewhere that MTX helps 60 % of people with RD who take it, with minimal side effects.

To attribute other common ailments to MTX without evidence is not only rediculous but dangerous.

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I agree Methotrexate works for a lot of people, however I was told in my case by the colorectal surgeon that the methotrexate that caused me to vomit blood and subsequently would have contributed to the fast growth of a 4.5 centimetre tumor, it is on my chart I am never to take methotrexate again. I agree I was extremely unlucky and know lots of people who are doing well on Methotrexate.

Best wishes

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Goodness what a time you are having on top of having RD.

I hope you find some respite soon.

Strange that your surgeon suggest MTX may have exacerbated your colorectal cancer as MTX is used as a treatment for colorectal cancer. Several more recent trials have been commissioned in the US and Cancer research UK with promising success rates. There are issues with bowel toxicity, not cancer, when MTX is taken in very high doses eg 200mgs, but this is around 10 times the dose people with RD take.

Take care.

Marie

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Yes I agree with you that it is horrifying to think that pharmaceutical companies, the health service and the government were providing us with drugs that may make us worse or in some cases like mine cause cancer. But this is what’s been happening and continuing to happen for a long time. Why? Money! It’s all down to money. And it’s not just horrifying but totally unthinkable that it’s happening. But it is. The medical profession are taught a certain way to do things and to be fair to them they are doing what they think is right. In some cases it works but from what I’ve read in my extreme self education on RA most people are suffering from several different conditions. I’ve never met a consultant rheumatologist yet who has mentioned what I should eat or alternative remedies I should try. Never. They had you a prescription or a leaflet and your out the door.

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That is because they are medical doctors and not homeopaths and dieticians. They assume u know what to eat and can do your own research re herbs etc.

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Well said hapsehepsut......it takes most of us years to get the right "recipe" to control our RD's.

I also think those unfortunate people who seem to take a very long time to find a drug regime that suits them, often have other health problems that mean they can't tolerate a lot of RD drugs.

I know a lot of rheumatologists may seem to be short & sharp, but their workload is crippling, & when they are trying to help by prescribing what they genuinely think will be the best way forward for someone, only to be met with resistance, I think it would take a saint not to get frustrated.

I am just grateful we still have the NHS, & have access to the drug our rheumatologist thinks will help us.. I have friends in the US who can only afford one or two of the drugs they really need to take & the stress of that must be dreadful.

So as you say, to everyone one newly diagnosed.....take heart from those of us who have had a degree of success onDmards &,Biologics......& don't convince yourself beforehand that every pill you take will make you feel dreadful..most won't!

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What u say makes sense. I'm terrified to take MTX due to all the scare mongering.

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Try not to listen to the scaremongering and make the best choices for you. Your rheumatologist will guide you. Yes some drugs make people feel unwell for a while, but they subside usually quickly and the benifits can be immense.

Also remember once you start taking meds, you can change your mind for whatever reason ! You can stop !

Living healithy, good diet and exercise of course helps but will not contol RD alone

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Ask you doctor to start at the lowest dose and also if you can take an injection rather than tablets - it's a little more expensive but is more effective and has less side effects.

I was terrified and thought I would feel worse on mtx but I didn't feel any side effects until recently when we upped the dose quite sharply - once it came down again I felt better almost immediately.

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Well said Hatshepsut. Dangerous to start attributing a causal link between meds and illnesses. Plenty of people - sadly - fall ill without being on RA drugs. As humans we feel things very strongly, but emotional responses as powerful as they are, can result in dramatic oversimplification of extraordinarily complex processes.

Bon

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Hi

Mtx & enbrel brought about remission for me. I have about 80% of my energy levels back, which meant I have had to modify my life.

I hate mtx (see previous post), however I can’t do without. It works and My liver clears it well. Been on mtx, for nearly 7 yrs.

Because you get cancer does not mean it was caused by mtx. In fact their is evidence that taking mtx, reduces the risk of getting certain cancers like breast cancer. If those peeps with ra, can manage their ra, without biologicals and other dmards I applauded you and wish you the best of luck. Most of us can’t though and it’s wrong to blame dmards for various complaints including cancer. Yes the drugs can cause cancer, but in order to develop cancer you must have at least 5 cancer markers present. Dmards only account for maybe 1 or 2 markers.

None of us would take the drugs, if we didn’t have to. We take them because when the combination is right, the outcomes outways the effects. So it’s always a balancing act and trade off at times. I personally hate steroids- just as much as mtx. But they too have a role to play. Long term use even at 5mg is not good. But it’s your choice!

Untreated ra is frightening, I have no deformities, no joint replacements, still working and living life to the max. I’ve had ra 7 yrs, have it moderately and my ra has been treated aggressively from the strart. I would say I’m a success story as I’ve been in remission for at least 5.5 yrs. plus there are many like me!

Each one journey is individual, one has to make it on their own, so try everything until you find what works for you, even if it means self management 😉

Joanne

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I am in total agreement with two posts above. Without the drugs I would be in a wheelchair. Transformed my life totally. I have been on Enbrel for 15 years or so. So do not knock the drugs or Consultants or NHS. Our makeup is totally different between individuals. Mtx is a anti cancer drug if you look into it's past.

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Really pleased for all you guys who have had their life back due to methotrexate and biological drugs. I know it does work for some people and I’m sure the health service will continue to use these drugs. I’ll stick to supplements and diet. I’m really too scared to go back on these drugs again. We all have to do what suits our bodies. Good luck everyone 😃

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Methotrexate is also used in cancer treatments , I was told this when I started taking it over 18 years now been on different doses though ,but I’m glad you found the cancer early good look with any new tabs they give you 💕

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That is exactly why I am so terrified of taking methotrexate. My drugs have been in my drawer for 6 months and I've been dealing with the pain and stiffness with the usual like icing exercise etc. I keep thinking there must be some other way. Hope u go from strength to strength and I believe u r on the right track. Although some swear by them calling them a miracle drug I'm still very reluctant to put them in my body after almost dying from a burst bleeding stomach ulcer. LooKing for better way which must be out there.

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Trust me I couldn’t get out of bed most mornings. I had to use a wheelchair for a while and mobility scooter to shop etc. Methotrexate did help but then now I’ve stopped I feel much better overall. My skin is brighter, I’m less fatigued and I feel alive again. I still have to take supplements and steroids but one step at a time.

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Hi my name is VeronicaF, I was sent home with 3 leafets one methotrexate, sulfasalazine, hydroxychloroquine to read and decide before going back, and reading all this has scared me even more, I thought coming on here would help me, but its just made me feel worse

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Exactly the same as me. Im terrified of taking these harsh drugs

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Yes i believe that too. My friend took everything they suggested with no changes to her diet, exercise or anyth alternative and the drs said all the side affects impacted on her lungs and that killed her. I can't remember if I said I take cider vinegar with money and warm water before breakfast and if I can last thing at night. I feel so much better too.

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