Methotrexate- First Time Advice Needed

Hello All! I am a 33 year old female from Louisiana, who got diagnosed with RA & Polyarthritis along with Elevated Sed Rate approximately a year ago. We have tried multiple drugs with no progress or relief (Plaquenil -Affected Eye sight along with No relief; Predisone/Steroids - Worked wonderfully and gave relief but caused really bad mood swings/irritation- to where I couldn't stand myself, My Husband and coworkers could not stand to be around either due to mood, Sulfasalazine- Had really bad Allergic reaction- Whelps all over body, swelling, Had to go to the local ER a few times), also tried Mobic, Voltaren Gel, Toradol injections- Since then I had Nuclear Medicine Bone Scan done that showed progression in Disease (Especially in Wrist, Elbows, Knees and Feet) along with developing Radial Styloid Tenosynovitis in both wrist but worse in the Right wrist- I have been relying on Flexeril and Tramadol along with others medications and Wrist splints for 4-6 weeks for minimal relief. Was not able to take any stronger doses or DMARDS due to the fact of being in Child Bearing years and No Birth Control. Was recently put on Birth Control so could start DMARD treatments- I see my Rheumatologist Thursday with the plan to start MTX immediately- Had all necessary labs and CXR done last Hello All! I am a 33 year old female from Louisiana, who got diagnosed with RA & Polyarthritis along with Elevated Sed Rate approximately a year ago. We have tried multiple drugs with no progress or relief (Plaquenil -Affected Eye sight along with No relief; Predisone/Steroids - Worked wonderfully and gave relief but caused really bad mood swings/irritation- to where I couldn't stand myself, My Husband and coworkers could not stand to be around either due to mood, Sulfasalazine- Had really bad Allergic reaction- Whelps all over body, swelling, Had to go to the local ER a few times), also tried Mobic, Voltaren Gel, Toradol injections- Since then I had Nuclear Medicine Bone Scan done that showed progression in Disease (Especially in Wrist, Elbows, Knees and Feet) along with developing Radial Styloid Tenosynovitis in both wrist but worse in the Right wrist- I have been relying on Flexeril and Tramadol along with others medications and Wrist splints for 4-6 weeks for minimal relief. Was not able to take any stronger doses or DMARDS due to the fact of being in Child Bearing years and No Birth Control. Was recently put on Birth Control so could start DMARD treatments- I see my Rheumatologist Thursday with the plan to start MTX immediately- Had all necessary labs and CXR done last week to be able to start.I have researched and reviewed all post on here and other sites and am asking for any advice or tips regarding MTX. I am fatigue and nauseated already on a regular basis, which i haveweek to be able to start.I have researched and reviewed all post on here and other sites and am asking for any advice or tips regarding MTX. I am fatigue and nauseated already on a regular basis, which i have noticed is a common side effects. Thanks in Advance for all insight.

18 Replies

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  • Hello

    I am also on Methotrexate ( except that I'm off it at the moment because of a lung infection). Because of reduced immunity, one is more prone to infections. It is important to stop MTX immediately and contact your doctor if you do get an infection. You will probably be prescribed antibiotics. It's important to have an annual flu jab, and I believe also the one to protect against pneumonia, though that may be for older patients, such as myself.

    My rheumatologist introduced MTX gradually. I used to feel a bit nauseous. Those who suffer really bad side effects often take the drug by injection instead of orally. The drug reduces one's Folic Acid, so you will be prescribed that, though it is NOT to be taken on Methotrexate day ( that's just once a week).

    Methotrexate is regarded as the gold standard treatment for rheumatoid arthritis. I do hope it works well for you. Don't despair if it doesn't . There are alternatives, such as the Anti TNF Bioligics which a lot of people take, but one has to have failed on MTX and one other DMARD before being prescribed that.

    I hope that's helpful.

    Good Luck! Jora.

  • Jora, I think it applies to all those who are immunosuppressed. I've had two pneumonia jabs. One when in my fifties, and another last year aged 64. xx

  • Ah, thanks for that information. That doesn't surprise me; I just wasn't 100% certain as I was 69 when the best struck!

  • I meant "when the beast struck" not "the best". It's certainly not that! J

  • Hi Jora: thanks for the advise. I didn't even think about the flu shot.

  • Drink LOTS of water.

    I find the nausea is easily managed with one 5mg prochlorperazine tablet taken about an hour before my weekly dose of methotrexate.

    Start at a low dose (mine was 7.5mg) and step up slowly, 2.5mg at a time. If the side effects get worse with an increase, step back to the lower dose, give it another few weeks & then try the increase again.

    We are all different, but I have not found that methotrexate makes me tired - the thing that does that is the disease.

    Hope it works for you & you start feeling better. It was a fantastic drug for me for several years & I still take it, but now in combination with other DMARDs.

  • You will probably read a lot about methotrexate, but remember that most people who post are the ones who are having problems. Lots of people are maintained on methotrexate and with minimal side effects. Some of us, however, have just not coped with it, or it has not been effective alone, and have had to be changed to other medication.

    Choose a day when you have least to do to take it, increase your folic acid to six days a week (not taking it on the same day as the MTX) and hope that the nausea diminishes with time. The injections (easy to do yourself) do cut down the side effects and you can have a lower dose for the same effectiveness.

    there is factual information on the NRAS site too.

  • Good point. I am going to talk with my doctor about getting MTX in an injectable form.

  • Hiya Angel11505 & welcome. It does sound as though you're not at all well controlled if you're fatigued but the nausea is another thing. Has it been determined what's causing it? Trouble is as you know MTX can cause that too, particularly so in the early weeks so it might an idea to determine what's causing it before starting it. With MTX it's due to a reduction in folate levels (it being a folate antagonist) & why we're prescribed folic acid to take (not on the same day though). Now, this is where our two countries differ, here in the UK we're prescribed 5mg daily (Rheumy's have their preferred amount per week but I take 5mg every day except the day i inject) as recommended by NICE but I believe in the US the FDA recommends only 2mg. It is possible for your Rheumy to prescribe folinic acid (Leucovorin) so do please let your Rheumy know how nauseous you are now before commencing MTX.

    You don't say whether you'll be started on oral or subcut. It's normal here to start on tablets but many don't tolerate them too well & so are switched to subcutaneous injections. They're generally better tolerated & more efficient by dose as it goes directly into the bloodstream, bypassing the stomach so often less or no nausea is experienced. I've been taking MTX 6 years now. I started on tablets & did have nausea & some other unwanted side effects so was switched to injections which I've done much better on. Choose a day convenient for you, when the day after you can take it easy just in case you do have side effects, you'll cope better if you know you've not a lot on the following day!

    I hope you do as well as I have on this med, it can be a very good one for many. :)

  • Hi Angel I have very aggressive RA and have been on Methotrexate for 6 years now with no problems I take 6x 2.5 tablets once a week and it seems to control my RA well though I do get what is called flair up every now and then. It did take about 7 weeks before the MTX started to work but I do take one day at a time cos it does depend on how I am feeling I think one of the worst things about RA is when you feel that you can do what you used to do but your body just says NO. I have found that I cant do about 80-90% of what I used to do but I just say !!! they can stop me from walking but the one thing they cant do is stop me smiling!!!!

  • Hi Angel11505,

    Further to oldtimer's post above, just to give you the link to the article on Methotrexate on the NRAS website: nras.org.uk/methotrexate-in...

    If you have any other questions, although we are in the UK, our Helpline team may be able to assist. You can email them on helpline@nras.org.uk or do consider getting in touch with the Arthritis Fondation as they also have a lot of information about medications used to treat RA e.g. arthritis.org/living-with-a...

    With kind regards

    EmmaS-NRAS

  • Hello, I was very alarmed to see your email, you've been really suffering. I started taking methotrexate when I got tendonitis along with the RA. 2013 I spent in a lot of pain. My hair fell out, I was itchy and tired and I was only taking 7 tabs per week.

    I have spent the last 6 months following the Clint Paddison diet, it's been very long and very hard and you have to really be determined to get well in order to follow it, but it does work because after 15 years of this illness my inflammatory marker is down to normal and I can do normal things again. I will be stiff for a while but I am not in pain now, I've told other people about this diet, some believe me, some don't and some can't be bothered or do not have the will power, but it does work and I try to tell anyone about whether they believe me or not.

    This is the first video I saw which introduced me to the diet.

    You don't have download his diet plan, you can get books on a plant diet etc. Basically you have no stomach lining left, due to anti biotics or an overgrowth of candida. I 're-built' mine and I can't believe I am well again. Good luck, and good luck to anyone else who reads this and believes me and perseveres.

  • Thanks HungryPeg for the information and insight.I have been referred to see an Orthopedic Surgeron regarding the Tendonits as the Injections into the wrist have Not helped. I really do appreciate your information and advice, In regards to the Clint Paddison diet- I am going to look more into this and possibly try it because my stomach is a whole other issue - Within this past year, I became very sickly and have started seeing a Gastroenterologist -which they did a colonoscopy and upper GI which results showed I have Gastritis, Esophagitis, Hiatal Hernia, Severe Heartburn and Acid reflux, which a biopsy confirmed that I have "BARRETTS ESOPHAGUS" as well. Antibiotics and some medicines have caused major tummy flare up issues. I am hoping that MTX will not cause issues as well.

  • Well you're clever enough to know that these drugs are not going to make things better, they'll just mask the problems and I found that the pain killers and anti-inflammatories just destroyed my stomach. If you do embark on this diet, you'll feel worse for a couple of weeks but don't give up, after about 3 months of really sticking to it you'll start to feel better, and you'll think it's a miracle. It's really hard though I warn you, you have to get people to help, you have to be really strict with yourself and you cannot touch sugar, it's poison..... Watch the 'That sugar film', it's brilliant for putting you off sugar....

  • Hello Angel,

    so sorry you are having such problems. I have been taking Methotrexate for 15 years now, apart from a two year break whilst I had chemotherapy for breast cancer. Started on tablets but was nauseous and had blackouts as the dose was increased from 7.5mg to 15mg and then up to 20mg. Started on injections, which stopped all the horrid side effects. I was on 25 ml with 10 mg Leflunomide (Arava) but recently my liver enzyme results have been elevated, so now been reduced to 20ml. I have had problems with a very painful mouth, but added B6 and B12 as well as the usual folic acid, and that appears to have resolved the problem. I'm also on Prednisolone for vasculitis. Hope Methotrexate works for you, and that you don't have too many side effects. Take care. xx

  • I started MTX about four month's now. For inflammation and RA. It has slowed down the attack on my joints and my feet and skin. I still feel it in my fingers joints and elbows and wrists. I have some day of being really tired, some nausea. Not everyday though. I have lost some hair but not a lot. I am so lucky to have been put on the MTX when I did because this autoimmune disease hit me like a ton of bricks and I am sure that if I wasn't put on this medicine I would be so much worse of. So it has helped. I have weighed the pros and cons and I would rather deal with some nausea and or tired then unable to move my joints. and the pain and skin reactions. That is just me. I was very scared too at first. but don't smoke or drink alcohol, watch your diet and drink lots of water. don't fight being tired at times. IT could be both your med and disease. be strong. remember there are people in worse shape or in a worse position then you. Keep positive.

  • Hi, I tried MTX some years ago but couldn't tolerate it. Now my doctor has me on leflunomide, a DMARD in the same family as MTX, and I tolerate it just fine. She had to start me slowly, gradually increasing the dose. It helps a lot with pain and swelling. She has also prescribed Tramadol for pain control. I agree with the others who indicate that watching one's diet can be a significant help. It might take some investigation and experimentation to see what dietary changes could work best for you. For myself, avoiding processed foods and consistently including fresh greens helps me with GI tract troubles and fatigue. My heart goes out to you. I sure hope you find some things to help you soon.

  • Hi: I was experiencing severe intestinal issues when I started methotrexate. My doctor doubled my folic acid and my digestive issues are now bearable.

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