I have been on methotrexate for 1 month now. 2x 10mg and 2 x15mg with 10 mg folic acid 24 hrs before. I made contact with rheumy dept this week as has been having sharp chest pains and slight cough, muscular pains and headaches. Waiting to hear back from them . I also spoke to GP for advice. I’m to phone her again later as she wants to refer me for chest X-ray again as concerned about lungs. Mentioned something called pneumonitis.
Essentially, do I have to take the MTX if it’s making me feel lousy- much lousier than the GCA/PMR? I’d prefer to just manage it all with the Pred(on 27.5 mg). Any thoughts please?
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Cyclegirl54
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Did you have a Chest X-ray before you started the MXT? I would ask Rheumatology Team if you should hold off on this weeks dose until you have some answers.
I started methotrexate in December 2017 and haven't had the side effects you mentioned. At the time it was first prescribed, the doctor was going to send me for a chest x-ray, but then noticed that I'd had one only 6 weeks earlier and it was clear. I'm okay to take it, but it is a powerful drug and I'd say you should be thoroughly checked out before taking any more.
Always check with your doctor for your own unique medical history. It is my understanding that Methotrexate can just be stopped without tapering ( check) It is my understanding that the side effect that you are suffering would indicate that it is not for you ( check).
It is usually given to us when we experience difficulty in tapering down from our Prednisalone dose. Have you given it a good shot using the dead slow nearly stop method?
Thanks for advice. I was having difficulty tapering last summer but then had GCA diagnosed December. I went onto 40 mg for 1 month and have been slowly reducing every 4 weeks. I can talk to gp in the morning . It’s so confusing I find. Glad to have support and thoughts from this group 🌸
Jane, just for info ~ yes Methotrexate can be simply stopped for any reason ie if you have an infection you can just stop it & restart a week/fortnight later with no issues.
I stopped mtx after a month - for exactly the reasons you mention. I felt so ill it wasn't something I could face carrying on with.
One of the side effects of mtx can be lung problems and your GP is absolutely on the ball to want an x-ray. OTOH, if the cause of the chest symptoms is an infection you should not take the mtx until it is cleared. I've not heard to taking the folic acid BEFORE taking the mtx - mtx interferes with folic acid so it makes more sense to take it the day after taking the mtx.
They suggest anything from 1mg per day, over 5mg once a week up to 5mg every day you don't take the mtx. Crackers - though to be fair, I suppose everyone is different...
1 400 microgram tablet of folic acid per day. I did have some hair loss but my daughter, who trims my hair every few weeks, told me last week that it had thickened. The strangest thing is that since starting medication, I have curly hair for the first time in my life. I'm not sure if it's the pred or the MTX that did that.
Yes, that describes mine as well. The consensus seems to be that it's the pred, but my hair first curled about the time I started the MTX, so I tended to connect the two.
Yes I have slight curly hair now( which I straighten!! ) only because it goes a bit funny after a day and I don’t like washing it very often. This for me must be the Pred.
Hi,
I don’t know if I have misunderstood but are you taking 50 mg of Methotrexate ( 2x 10mg and 2 x 15 mg )? If so is this the right dose as it seems very high?
• in reply to
Hi Tynemouth
I think Cyclegirl meant 2xWeeks at 10mg then 2xWeeks at 15mg
Usual Dose is 15mg-20mg as a Steroid Sparer, using it as a DMARD up to 25mg per week.
When you start MXT it’s usually two weeks at 10mg, then two weeks at 15mg then either stay there or increase to 20mg which is the dose l was on.
This drug has black box warnings. These are the most serious warnings from the Food and Drug Administration (FDA). Black box warnings alert doctors and patients about drug effects that may be dangerous.
Liver problems warning: Methotrexate can cause end-stage liver disease (fibrosis and cirrhosis). Your risk increases the longer you take this drug.
Lung problems warning: Methotrexate can cause lung lesions (sores). This effect can occur at any time during your treatment and with any dosage. Stopping treatment may not cause the lesion to go away. Call your doctor right away if you have trouble breathing, shortness of breath, chest pain, or a dry cough while taking this drug.
Lymphoma warning: Methotrexate raises your risk of malignant lymphoma (a cancer of the immune system). This risk may or may not go away when you stop taking the drug.
Skin reactions warning: Methotrexate can cause skin reactions that could be fatal (cause death). They may or may not go away when you stop taking the drug. If you have certain symptoms while taking this drug, call your doctor or 911 right away. These symptoms include red, swollen, blistered, or peeling skin, rash, fever, red or irritated eyes, or sores in your mouth, throat, nose, or eyes.
Infections warning: Methotrexate can make your body less able to fight infection. People taking this drug are at increased risk of serious infections that could be life-threatening. People with an active infection should not start using methotrexate until the infection is treated.
Harmful buildup warning: Certain health problems can make your body clear this drug more slowly. This can cause the drug to build up in your body and raise your risk of side effects. If this occurs, your doctor may decrease your dose or stop your treatment. Before starting this drug, tell your doctor if you have kidney problems, ascites (fluid in your abdomen), or pleural effusion (fluid around your lungs).
Tumor lysis syndrome warning: If you have a rapidly growing tumor and take methotrexate, you’re at increased risk of tumor lysis syndrome. This condition can be fatal (cause death). Call your doctor right away if you have any symptoms of this syndrome. Symptoms include trouble passing urine, muscle weakness or cramps, upset stomach or no appetite, vomiting, loose stools, or feeling sluggish. They also include passing out, or having a fast heartbeat or a heartbeat that doesn’t feel normal.
Warning about treatments that increase side effects: Some medications and treatments can increase the side effects of methotrexate. These include radiation therapy, which raises your risk of bone or muscle damage. These also include use of nonsteroidal anti-inflammatory drugs (NSAIDs). These medications raise your risk of problems with your stomach, bowel, or bone marrow. These problems can be fatal (cause death). Examples of NSAIDs include ibuprofen and naproxen.
Pregnancy warning: Methotrexate can seriously harm or end a pregnancy. If you have psoriasis or rheumatoid arthritis and are pregnant, don’t use methotrexate at all. If you get pregnant while taking this drug, call your doctor right away. This drug can also affect sperm. Both men and women should use effective birth control during treatment.
Gastrointestinal tract warning: Methotrexate can cause severe diarrhea. It can also cause ulcerative stomatitis, an infectious disease of the mouth resulting in swollen, spongy gums, sores, and loose teeth. If these effects occur, your doctor may interrupt your treatment with this drug.
This article is relating to the side effects of methotrexate ...everyone should read it.
When I started on mtx pills, then injections I was told to take one folic acid tablet the day before and one the day after. As I was feeling so sick on it this was increased to 1 tablet every day except the day I took the mtx. When I was still getting headaches, temperature fluctuations and nausea I was told to try taking 2 the day before, 2 the day after and 1 each on 2 other days in the week so basically 6 a week but play around with when. The rheumy nurse did say they have to play around to find what works for each person but don’t know why.
I’ve just been taken off it as it seems to have stopped working and I’m feeling worse and worse on it, even though I tolerated it quite well at the start and certainly didn’t get a lot of side effects that others have had. I have been getting very out of breath though and that raised an instant red flag so your gp is right to check your chest as it can contraindicate mtx use.
Also as others have said If you have any kind of bug or infection you should talk to your doctor about whether you should hold off yur dose at the time. As it’s an immune suppressant anything can take hold much more than it would otherwise so a cold for someone else can develop rapidly for anyone on mtx so they are super careful on it.
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