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Concerned about Methotrexate

Good Morning,

My name is Geneen and I need to ask a few questions and I am really hoping for some guidance. I was just diagnosed with RA and have been prescribed Methotrexate. I am very hesitant in taking this medication for a few reasons. See my sister took this medication for her Scleroderma, combined with others for 20 years and she recently passed away. I believe in my heart the medications over time caused her to get Cancer. My heart is forever broken, and I am so afraid that now that I have been diagnosed, the same will happen to me. I know both of our illnesses are auto immune. They think the stress of losing my sister, mother, uncle and cousin has brought this on.

I am swollen, achy and burning sensation in both my legs. My fingers are sore but I believe I have ignored these symptoms for sometime. I was taking care of everyone else and just thought I was getting older and achy and tired.

So now that I have explained my fears... The doctor Prescribed me to take 4 pills 2.5mg each all in one day. Plus Folic acid once a day 1mg . I am not sure what day is a good day to start as I work Monday through Wednesday, 12 hours in a hospital. Do I take it all at once. I also am taking Diclofenac sodium DR 75mg, twice a day. I take my synthroid when I wake up ... just trying to figure out a routine because I get very nauseous with most medications.

Just super worried and have a high tolerance for pain if I should take it?? Please give me some guidance, I respect all opinions.

Thank you,

Geneen

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Hi Olmettig, welcome to Healthunlock. Like you, autoimmune disease has run rampant in my family. The MTX is a DMARD(disease modifying anti rheumatic drug. I also have a very high pain tolerance however, the drug is meant to reduce the damage done by disease. Remember that the damage cannot be undone. The goal is to slow down the progression. My Rheumy reminded me that not so long ago we would be institutionalize do and in a wheelchair.

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Thank you Damaged. I appreciate your advise. I was just trying to decide to take it on Sundays or Thursday's when I am not working, just in case I get any side effects. I guess I won't know if it works until, I try it.

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Hiya & welcome Geneen. I'm sorry you've been diagnosed & also you losing your dear sister. I think you could well be right, we're so busy looking after others it's only once things reach a head we sit & think then see our GP about what's ailing us.

Ok, to put your mind at rest, RD (Rheumatoid Disease) isn't that common, Scleroderma is less common still. Whilst there is incidence MTX can cause cancer it's really very, very rare relative to the patients who are treated with it. You may know it's usually the first line of treatment for RD so the majority of us will have been on it since being diagnosed. You may also know that it was originally developed as a chemotherapy med but was found a lower doses to have an effect on reducing the function of the cells which cause inflammation in the joint tissue, thus moderating our RD. So, in effect, we're taking a very low dose of a chemo med but in such low doses & taken far less frequently it's drug class is a DMARD.

I was diagnosed seropositive in 2008. I've been on MTX for 8 years, my second DMARD. It's truly the best med I've taken for RD & I now inject as I can take a lower dose than in tablets (17.5mg sub cut instead of 20mg tablets) because with that & some of my other meds it was too much for my liver to be comfortable. I take it you're not in the UK? I say this because we're prescribed 5mg folic acid not 1mg which I believe is more common in the US amongst other places. I take 5mg every day except the day I inject & have no side effects from the MTX except for being a little more tired & have less appetite the day after. I was advised by my Consultant to take my 15mg throughout the day with meals so 2 with breakfast, 2 with lunch & 2 with dinner &, again, had no side effects. Your Rheumy has started you on a comparatively low dose so hopefully that will be helpful in regard to possible side effects.

Whether you should take it, well you can only be guided by your Rheumy. He/she is the person who knows your particular type of RD (seropositive/seronegative), if you've already incurred damage to any joints & severity at diagnosis. I can say in all truthfulness it doesn't suit everybody but it does work for many. Do bear in mind though that sites like ours are more often than not used by those not doing well, or like yourself newky diagnosed so it's not representative of those on MTX & doning well & so getting in with their lives. Give it 12 weeks or so to work though you should notice subtle changes before then. We're here happy to answer any questions, or your Rheumy team of course.

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Thank you nomoreheels,

I appreciate your advise. I will have to give it a try.. just trying to decide if I should start today or wait until Thursday. Because I work Mon thru Wednesday. Because then if I get any side effects I can be home and not at work. Sounds like I need to see what works. I am glad I joined this site, it's helpful because the person I would be sharing my conversation with most, can only watch from above. You have been very helpful.

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You're welcome. I've just re-read your post & realised you can't be in the UK, it's evening here! If it was me I'd do as you're thinking of doing & for the same reason, wait til Thursday. I do hope you find it helpful being here, there's nothing like asking someone who has experience of something. We need to take advice from our Rheumy's but after all they don't live with a chronic disease do they? 🙂

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Hi Geneen ,

I am sorry to hear of your loss.

I too believe that stress was at least a trigger for my RA. I was working two jobs (night duty included) , multiple severe stresses plus then lost my dad to melanoma , and mum to sudden stroke.

Welcome to this site . I am new to site like you , and I am sure you will find lots of great advice and support from people on here , as I have.

I am seropositive , diagnosed just over 12 months ago . I am on Methotrexate , as well as other medications. I work wed and thurs , I find it easier and better to take mine on a Monday .....gives me two days before work . I don't really get a lot of nausea but I do get very tired and fatigued. I cannot be sure though if it's the methotrexate. I am leaning more to my RA being not controlled , causing this.

I just may add...

On my first visit to my Rheumatologist, he ordered methotrexate. I was very reluctant and hated the thought of it......so I needed two weeks to think about it .When I went back to see him , I asked him what did he think would happen if I didn't go on it there and then . He said I would be in a "very bad way " and he gave me three months before I would end up in a wheelchair.!

I kind of thought he was exaggerating a bit ...... but I went onto the Meds.

12 months down the track, and knowing what I know now, he was right.

I still don't have disease control , hopefully I will , but I am so glad that I Did take his advice then.

Take care

Karen

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Hi Karen,

Thank you so much for sharing your information. Listening to all of you, and sharing how important it is, I have decided to start it on Wednesday night after I get home from work. Because then I am off Thursday and Friday and it will give me some time to see how I do. I have developed a real bad chest cold over this past weekend, sounds like bronchitis and I am hoping it clears by then as well. Do you take Folic acid as well?? I can definitely feel how stiff, sore and achy I am.

Thank you again,

Geneen

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Hi Geneen,

So sorry to hear of your losses. You have certainly been through a tough and stressful time.

I've been on methotrexate now for about 13 years and thankfully I tolerate it well and it seems to work for me. My Rheumy gets me to take 5mg 6 days a week - the 7th being the day I take the MTX.

I will still have a glass of wine every so often even though I'm on MTX, so I've timed taking it as being on a Tuesday as I'd normally not be out on a Tuesday night!

Normally if I end up on an antibiotic, the pharmacist advises that I skip my MTX until I'm finished the antibiotic and then start again.

As noted above, MTX was originally developed as an anti cancer drug, so it's unlikely therefore to cause it. Try not to worry and give it about 3 months and see how you get on.

For some people it causes nausea, so make sure to take it with food - with my porridge works for me.

Best of luck,

Maeve

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Thank you Maeve,

With everyone's advise, I am going to try it. I will start this Thursday as I am not working on Thursday or Friday and it will give me some time to feel ok. Definitely I will try it with some food. It's nice to get the answers I am seeking for.

Thank you for being so nice and replying.

Geneen

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Hi Geneen,

If you've any other questions, make sure and ask them. This site and the people on it are full of helpful information and very willing to share.

Best of luck,

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Thank you, I will. Everyone has been extremely nice and replying to my concerns.

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Hi Geneen ,

No problem at all . Sounds like a good plan to me . Just remember that you do need to be well hydrated when taking your methotrexate.....can you manage to drink heaps at work ? (Plus you don't want to be visiting loo all night if you are drinking lots after work) I take mine at around 6pm .i do take the 5mg folic acid on the wed and sat (with evening meal) .

Sorry to hear your feeling stiff sore and aching......and with bad chest as well . Make sure you get the go ahead from dr though before you start your meds.(if your still unwell)

I have come down with horrible head cold this past weekend ! I wasn't sure if I should take my methotrexate or not. ( .ive been on Humira as well ) Lovely people on this site gave advice , which I took on board . Phoned my Rheumatologist......gave the ok to take it ..... although I rang the Enbrel helpline ( as I'm switching to Enbrel ).....they said decision up to the prescribing dr ......but they suggested to wait till cold symptoms gone . ,!!

Take care

Karen x

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Good Morning,

I was diagnosed in April with RA. I was prescribed 4 pills 2.5mg each once a week (I was told that's the normal dosage when starting) along with 10mg prednisone & 1mg folic acid. I too was scared to begin but I knew I had to. My X-rays don't show any damage right now & I would like that to maintain for as long as possible. I went to doctor today & they increased my methotrexate to 6 pills a week & lowered my prednisone. I make sure to eat before I take any of my medications & I have not had any problems. I do feel a little fatigue when I take the methotrexate but that's about it. I take it when I'm working just to keep my mind off of it. Good Luck with everything

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I just came from my PCP and he has advised me to have a few more tests done before I start the Methotrexate. My RH factor was 259 and some of my other tests showed negative. My primary doctor said they should run another panel, x rays and bone scan. The Rheumatoid Arthritis came back positive. I just want to make sure everything is definite before taking the Methotrexate.

Did you have several tests??

Thank you for sharing,

Geneen

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Hi everyone,

Did many of you have several tests before diagnosed with Rheumatoid Arthritis. My doctor only ran an Auto Immune Panel. Which showed my RA Factor High. My Lupus Anticoagulant Eval was elevated and wants me to repeat the test in 12 weeks. The ESR was 20 and the ANA Comprehensive was Negative. These are the only test I have had. The doctor did an exam and then gave me a prescription for Methotrexate, Folic Acid and Voltarin.

Should I have X-rays and a Bone Scan?? The doctor I am currently seeing says she does not do these tests until 12 months after medication.

What do you think? All of your advice has been so helpful thus far.

Thank you,

Geneen

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My RH was 382 & I had originally went to a neurologist (my PCP thought my symptoms may have been a pinched nerve) who when she saw my results sent me to a rheumatologist. They ran the blood work again & confirmed rheumatoid arthritis. I have had X-rays done of my hands, neck & arms (they don't see any damage right now). I also have a hematologist I go see due to my anemia. It feels like I'm getting blood work done at least once a month. They changed my methotrexate today from 4 to 6 pills 2.5mg & lowered my prednisone to 7.5mg from 10mg. I should be off prednisone by end of august. They also took blood & urine.

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Thank you SassyRa,

I called my rheumatologist today and asked if they would run another panel, and X-rays. They said they would 2 weeks after I start Methotrexate and X-rays will be done at a later date. I

Am so sore today, feel like I am trapped in an elderly body. Because I have bronchitis I will have to wait a few days before starting my Methotrexate. Thank you for writing back. Hope you are feeling well soon!

Geneen

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