Methotrexate risks versus inflammation risks

Posted by cptrayes @cptrayes, Sep 17 11:28am

Rheumatology want to put me on methotrexate but I want to make a rational decision about it. I feel well and have none of my RA/vasculitis symptoms, likely due to a raft of supplements I'm taking. But my CRP is 17 when it should be nothing, and is classed as high in the UK
Nobody in rheumatology wants to talk to me about the risks of continuing with a raised CRP versus the risks of both methotrexate itself (mostly kidney and liver) and the risk of lowering my immune system and catching bugs.

Can anyone help? Thanks!

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I have nothing to contribute but am following. I have similar circumstances so want more info on this particular choice of drug (edited). Following. Thank you for the post. Hope you find relief soon!

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I spoke to a fabulous NHS pharmacist this morning who had been told to put me on MTX, and asked her this question. She couldn't answer it but she did agree that it seemed unwise to take methotrexate when I'm symptom free. So she has referred me back to the Rheumatologist for ultrasound investigation of whether i do or don't have active inflammation going on in my joints and so I can ask the question of a Rheumatologist. That'll probably take 2 months to happen, which will give the supplements more time to work. I've bought the test kit already to take another blood sample to get a third CRP reading which will tell me if the CRP is going up, down, or stable. Up, I'll take MTX, down I'll stick with the supplements, level, I'll do what the Rheumatologist tells me to do.

Apparently there are 1 million people in the UK on methotrexate but there's no doubt it's a nasty drug. Taking it for cancer to save your life is one thing. Having blood tests every 3 months for the rest of your life to take it when you don't have any symptoms, only blood markers, is quite another!

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Good research in your self interest. The decision relates to the type of
vasculitis that has been diagnosed as some variants are more subtly aggressive
than others as far as your cardiovascular risks. What treatment are you using
for symptoms control with your RA?
With systemic inflammation our risk factors for atherosclerosis are increased.
My US cardiologist started me on statin for psoriatic arthritis with my CRP
being normal. There is some data suggesting biologics may mitigate that risk as well. Supplements that I found likely to help are vitamin D, turmeric,
melatonin and CoQ10. Consider Mediterranean diet.
Your pharmacist has appropriate suggestions to discuss with your rheumatologist.
I paid out of pocket to have an Interleukin- 6 level lab drawn which is
the major active inflammatory component of our CRP. After observing
my progress over time my rheumatologist is more concerned with symptoms
than repeating lab. Good to be well informed.

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I'm running my own bloods through a local hospital, the NHS is trying to prescribe MTX on, in my opinion, too little data.

No rheumatologist will diagnose my vasculitis, I have no idea why. I suspect it's because they would have to refer me to a vascular expert and they don't want to. My GP said I had it on the basis of bruising, purple skin, white fingers, spontaneous blood spots under my skin, skin so thin I drew blood if I sctrached an itch, all over skin itching, extreme tiredness, tinnitus, collapsing dark blue veins across my wrist when raised above heart height. But one rheumatologist even said that my daily capillary nosebleeds weren't a symptom when even the NHS website says it is!

There is literally no-one here I can trust but myself. I'm completely symptom free right now, except for a slight tinnitus which is still reducing, taking MSM, liquorice root, curcumin and cats claw. All those have been tested as anti-inflammatory agents and are of proven effectiveness.

I've got really good heart function at the moment, we have a home ECG because of my husband's heart condition and I test with that. I'm certainly prepared to give the supplements longer to work to bring down the CRP before I go on MTX.

Thanks for your input.

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Profile picture for cptrayes @cptrayes

I'm running my own bloods through a local hospital, the NHS is trying to prescribe MTX on, in my opinion, too little data.

No rheumatologist will diagnose my vasculitis, I have no idea why. I suspect it's because they would have to refer me to a vascular expert and they don't want to. My GP said I had it on the basis of bruising, purple skin, white fingers, spontaneous blood spots under my skin, skin so thin I drew blood if I sctrached an itch, all over skin itching, extreme tiredness, tinnitus, collapsing dark blue veins across my wrist when raised above heart height. But one rheumatologist even said that my daily capillary nosebleeds weren't a symptom when even the NHS website says it is!

There is literally no-one here I can trust but myself. I'm completely symptom free right now, except for a slight tinnitus which is still reducing, taking MSM, liquorice root, curcumin and cats claw. All those have been tested as anti-inflammatory agents and are of proven effectiveness.

I've got really good heart function at the moment, we have a home ECG because of my husband's heart condition and I test with that. I'm certainly prepared to give the supplements longer to work to bring down the CRP before I go on MTX.

Thanks for your input.

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You really are not symptom free if you have a CRP of 17. Blood contains symptoms thus the 17 reading. Please remember that red swollen joints are not the ONLY symptoms. When you have a high CRP, RA could be attacking your heart or lungs with the continue inflamation.

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Profile picture for mjq @mjq

You really are not symptom free if you have a CRP of 17. Blood contains symptoms thus the 17 reading. Please remember that red swollen joints are not the ONLY symptoms. When you have a high CRP, RA could be attacking your heart or lungs with the continue inflamation.

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That was the reason I started this thread? The CRP is my ONLY symptom currently. My ESR is normal and my anti CCP is now outside the range for an RA diagnosis in the UK.

I need to know what the relative risk is of continuing with a CRP of 17 versus the very nasty and sometimes fatal, if rare, side effects of MTX on liver and kidneys, and the common side effects that it not only makes many people feel unwell but leaves them open to every infection going, which can also lead to septicaemia.

It's not a benign drug and I mix with a lot of groups of people in confined spaces and have no intention of wearing a filter mask every time I do.

Can you quantify the CRP risks for me, I can't find anyone who can?

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Good afternoon,
I have EGPA and have been on Prenizone, Cyclophosphamide,Gabapentine , and two other drugs for bone and infection risk. I have reached remission after four months of treatment and have moved to Methotrexate 20 mg a week starting yesterday. I compare the risk of my previous regime to the Methotrexate and am willing to accept the risk since a loss of remission would be devastating. It seems that balance is always the better of two evils associated with these challenging autoimmune diseases. I can understand your frustration and pray that you find answers.

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Profile picture for georox @georox

Good afternoon,
I have EGPA and have been on Prenizone, Cyclophosphamide,Gabapentine , and two other drugs for bone and infection risk. I have reached remission after four months of treatment and have moved to Methotrexate 20 mg a week starting yesterday. I compare the risk of my previous regime to the Methotrexate and am willing to accept the risk since a loss of remission would be devastating. It seems that balance is always the better of two evils associated with these challenging autoimmune diseases. I can understand your frustration and pray that you find answers.

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Thankfully, I don't have your history. I had only the mildest joint problems that always go after 48 hours, it's called palindromic. In took hydroxychloroquine for 12 weeks until side effects started in my eyes but I've not taken any other drugs.

I've looked up as far as I can go about risks. My risk of a heart attack or a stroke is 2 or 3 times. But 2 or 3 times tiny is still tiny. There's no history of either in my family, I'm fit, tall and slim, exercise 5-6 days a week and eat a low UPF diet with plenty of fruit and veg.

I'm hoping to goodness that my next test shows my CRP dropping again.

I hope methotrexate works for you, it's a very effective drug if you need to take it.

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Profile picture for georox @georox

Good afternoon,
I have EGPA and have been on Prenizone, Cyclophosphamide,Gabapentine , and two other drugs for bone and infection risk. I have reached remission after four months of treatment and have moved to Methotrexate 20 mg a week starting yesterday. I compare the risk of my previous regime to the Methotrexate and am willing to accept the risk since a loss of remission would be devastating. It seems that balance is always the better of two evils associated with these challenging autoimmune diseases. I can understand your frustration and pray that you find answers.

Jump to this post

Have any of you explored the EGPA biologic drug Nucala to control your symptoms? I have been on it for 18 months and am doing well, off prednisone, and very grateful. At close to 80 years old. I have very little side effects and , so far, reduced immunity has not been a problem.
God bless your journeys.
MTH13

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Profile picture for cptrayes @cptrayes

I spoke to a fabulous NHS pharmacist this morning who had been told to put me on MTX, and asked her this question. She couldn't answer it but she did agree that it seemed unwise to take methotrexate when I'm symptom free. So she has referred me back to the Rheumatologist for ultrasound investigation of whether i do or don't have active inflammation going on in my joints and so I can ask the question of a Rheumatologist. That'll probably take 2 months to happen, which will give the supplements more time to work. I've bought the test kit already to take another blood sample to get a third CRP reading which will tell me if the CRP is going up, down, or stable. Up, I'll take MTX, down I'll stick with the supplements, level, I'll do what the Rheumatologist tells me to do.

Apparently there are 1 million people in the UK on methotrexate but there's no doubt it's a nasty drug. Taking it for cancer to save your life is one thing. Having blood tests every 3 months for the rest of your life to take it when you don't have any symptoms, only blood markers, is quite another!

Jump to this post

@cptrayes i have been diagnosed with RA since 2012. I initially began on Humira auto pen with methotrexate… the belief being there was a synergistic effect of the two drugs being more effective together than either was alone. But the MTX jacked up my liver enzymes. They kept decreasing the Mtx dosage and i developed antibodies to the Humira. So he switched me to Enbrel + MTX. That worked pretty well until the liver enzymes started to rise again. I went initially to injection of MTX rather than oral and that held things at bay - until it didn’t. So in 2020 I changed docs and started on Remicade infusions. No MTX. And still am on that program today.

so hang in and be willing to make changes…

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