Alternatives to methotrexate?: Who takes other drugs... - NRAS

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Alternatives to methotrexate?

Georgie11 profile image
18 Replies

Who takes other drugs? My dad is on mxt but keeps having to come off cause of chest infections. What alternatives work for people? Dr never seems to suggest anything else!?

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Georgie11
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18 Replies
nomoreheels profile image
nomoreheels

Hiya Georgie. Sorry to hear your dad's still struggling, it does sound as though his Rheumy is deferring trying another DMARD for some reason if he's requested changing to a different one, unless he's not being proactive enough & waiting for his Rheumy to offer something else.

It's not really an easy question to answer. Ask one person & they'll say such&such DMARD has been wonderful for them but another person will say the complete opposite, we each respond differently, you see I do well on MTX, no chest problems unlike your dad. The only way to know is for him to try but of course as is the case with most DMARDs you're back to square 1 & waiting for it to be effective though it does sound as though his Rheumy needs to listen to him a bit better. Has he offered any investigations, to see just what's going on?

Maybe a look through the list of DMARDs from NRAS will inform him of the options available ready for his next Rheumy visit nras.org.uk/getting-establi...

I hope he's listened to, or if anyone goes with him to his appointments they can stress how difficult it is for him, sometimes someone else's viewpoint can make a difference.

medway-lady profile image
medway-lady

I think that it is an impossible question and perhaps you might go with him to his doctor and ask him. Lots of medications are contraindicated for lots of reason their is no ideal medication and it might depend on severity of the disease, other medical conditions say Asthma or heart etc, etc. MTX is widely used though although I don't take it so if I were you I'd look up NRAS website have a good read and write down a list of questions to take with you at his txt appointment. Good luck and it also might be the same infection has not really ever gone ask about that too.

Keana profile image
Keana

I was very allergic to MTX and refused to take it. My Rh Consultant told me that it was impossible as he hadn't heard of any one feeling like I did from the drug. I went to my GP and explained how I felt and he said that, no matter how clever and qualified a consultant is, neither he or anyone else will ever know my body better than I do. I was put on a different drug straight away and have had no side effects. Push for what is best for you.

andyswarbs profile image
andyswarbs

I can only say that diet works as a major starting point for helping yourself. It's not an easy choice, but after six months I am in almost no pain, almost no inflammation, and almost no drugs.

rooney2011 profile image
rooney2011 in reply to andyswarbs

Can you describe your diet for us? Thanks

andyswarbs profile image
andyswarbs in reply to rooney2011

Essentially whole-food plant-based diet. I exclude meat fish dairy gluten and the nightshade plants. I have extremely little oil & sugar. Every day I have turmeric. I started the process with a two day cleanse of cucumber and celery juice, and follow that through by taking that juice at least four days a week to start each day.

Recently I found that bananas cause inflammation in my body so they are out for a while. Otherwise most fruits are great - as fruits, but not as juice. I do not drink fruit juice - the sugar rush can cause inflammation. Great fruits are blueberries, cherries and pineapple, since they all can reduce inflammation.

The diet I follow is called the Paddison Program paddisonprogram.com, and being in the program has such educational benefits of seeing others go through the same pains and finding new tricks (often non-dietary) to help improve the body.

I also run my own blog at foodandarthritis.blogspot.c...

rooney2011 profile image
rooney2011 in reply to andyswarbs

Thanks. That was a great read...and I appreciate all the ideas I have gathered! I am going to watch my diet much more!!

And of course Minocycline might be an answer as well...

Em13 profile image
Em13

I agree with andyswarbs on this, but you could look into Low Dose Naltrexone as well.

Simba1992 profile image
Simba1992

The AIP diet works for me and many others. This diet has the most scientific evidence for working in AI diseases. Really an idea to look it up. Well explained why and how it works by many doctors.

andyswarbs profile image
andyswarbs in reply to Simba1992

There is much to be praised in paleo diet in the sense of encouraging people to consider dietary approach, and especially considering the quality of foods. It tends to work to begin with but there is increasing evidence of it being less effective in the long term. I followed one paleo blog where sadly the writer was returning to MTX, and also I find inside the paddison program forum a number of ex-paleo dieters. (I wonder if there are some people who go in the other direction?)

I just love this video on paleo-poop

nutritionfacts.org/video/pa...

and I am sure you will as well.

Simba1992 profile image
Simba1992 in reply to andyswarbs

Paleo diet is not the same as AIP, far from it actually. AIP really is more restricted with the goal to not only heal the gut but also elimminate the foods that trigger inflammation.It is not an easy task and should be followed up by a doctor. I think there are many who find it too hard to follow the diet long term and usually do not have enough support for this line of treatment. True that mtx help with the symptoms of RA for around 50% and may retard progression but I cannot understand why there is so much resistance and almost animocity among RA sufferers against something you can combine with med treatment and that you can only have bennefit from, no toxic effects.

The Paddison diet, I am sure really makes a difference for many just like the AIP. I am also sure that people respond differently to these diets and we do not know as of yet what in the metabolism are the ruling factors when choosing a diet with good fats and animal protiens, or a diet where these are seen as culprits.

andyswarbs profile image
andyswarbs in reply to Simba1992

My apologies for confusion. AIP when googled comes up with auto-immune paleo as well as protocol.

nomoreheels profile image
nomoreheels in reply to Simba1992

I don't know for sure obviously but patients may be being dissuaded/influenced from trying such diets by their Rheumys for two reasons you mention, namely doctors following up & support for them as the NICE guidelines state:

1.7 Diet and complementary therapies

1.7.1.1 Inform people with RA who wish to experiment with their diet that there is no strong evidence that their arthritis will benefit. However, they could be encouraged to follow the principles of a Mediterranean diet (more bread, fruit, vegetables and fish; less meat; and replace butter and cheese with products based on vegetable and plant oils). [2009]

1.7.1.2 Inform people with RA who wish to try complementary therapies that although some may provide short-term symptomatic benefit, there is little or no evidence for their long-term efficacy. [2009]

1.7.1.3 If a person with RA decides to try complementary therapies, advise them:

these approaches should not replace conventional treatment

this should not prejudice the attitudes of members of the multidisciplinary team, or affect the care offered. [2009]

It would be interesting to know however how many Rheumys don't follow the guideline to the letter?

Simba1992 profile image
Simba1992 in reply to nomoreheels

Interesting nomoreheals! The reason for the reluctance of encouraging alternative treatments alongside meds to RA patients, may very well be the lack of knowledge and understanding but also the lack of time that a more holistic treatment strategy would require.

1.7.1.1(?) There is abundant scientific evidence of gluten sensitivity and of the risk factors in developing a leaky gut that triggers autoimmunity. Bread is not something that should thus be recommended for RA patients.☹️

Yes and what about the prejudice.....

nomoreheels profile image
nomoreheels in reply to Simba1992

Lack of time to develop a mainstream holistic treatment strategy possibly, particularly with the state the NHS is in. My Rheumy for one advocates the Med diet & my GP doesn't entertain alternatives (even including Chiropractic which I've seen work!) & I trust her medically more than any doctor I've had so I'd be on a hiding to nothing from the get go. Rheumatology is strapped for cash & one of the most overworked departments certainly.

I'm not a believer in no gluten unless there's really good reason, i.e. are coeliac or it's known to cause you inflammation. Bread doesn't affect me, neither does rice & slightly off subject neither do tomatoes or fruit (I eat 2 satsumas a day plus & rightly or wrongly I attribute that part to having not had a cold for the past few years) plus other fruit, I'm sure I'm not unique. Maybe the gluten sensitivity/leaky gut scientific evidence is too 'functional' for main stream medics just yet?

rooney2011 profile image
rooney2011 in reply to Simba1992

Thanks to all of you on this thread. Sorry for the delay in responding but we in the US were electing a president. I should be apologizing for it to all. It certainly caused a flare after working so hard for CLINTON. Onward! Much personal research time ahead!

melissa6140 profile image
melissa6140

metotrexate was affecting my liver so the doctor gave me areva and I was allergic to that big time. I have been on xeljanz for a week now but it takes time to kick in. Had a really bad flare so when I saw the doctor two days ago she, gave me the steroid injection and I still have to take prednisone till it totally kicks in. Hopefully it works and the xeljanz people are suppose to look into helping me with cost. Its really expensive and even if you have insurance you still need their help help in paying for the co-pay. I can't take to many of the medications because I also have high blood pressure.

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