Methotrexate: Hi all, I have just joined and... - LUPUS UK

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Methotrexate

Jasmine22
Jasmine22

Hi all,

I have just joined and thought I would introduce myself and also maybe gain some insight into the effects/effectiveness of Methotrexate please.

My rheumatologist believes that I have Lupus, although my ANA was not positive, so they are currently calling it Mixed Connective Tissue Disease. He gave me a course of steroids (Prednisilone) that were completely inneffective, apart from nasty side effects, including yellowing of the whites of my eyes.

He was going to prescribe Hydroxychloroquine, however, he decided that as my condition and mobility was deteriorating rapidly he would put me on Methotrexate. I was supposed to start it two days ago, however, I have a chest infection so have had to postpone it.

I am very sensitive to drugs and even painkillers such as cocodamol render me unable to function adequately. I understand how the drug works as I have a biology degree, however, to be honest, I am feeling quite anxious about taking it and any info on other people's experiences with it would be greatly appreciated.

Thank you,

Jasmine.

10 Replies
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Jasmine, welcome, I am sorry you have been given a diagnosis of MCTD. I have no real experience of Methotrexate, yet!, though I have a feeling we will soon become acquainted, as Mycophenolate Motefil which I have been on, appears not to be stopping active Lupus, on quite a decent dose. I like you, am ridiculously sensitive to drugs, but have to say, surprisingly tolerated Mycophenolate well, and prior to that Azathioprine.

Sadly at the end of the day how we react basically comes down to trying the drug prescribed, I go in expecting the worse, anything less I am pleasantly surprised All I can tell you, without immunosupression drugs, which are a godsend in sparing us steroids, they very much do have their place in treatment. With the two other drugs I mentioned, you do have choices so to speak, if the Methotrexate does not suit you.

I am sure another of well seasoned members here who do take Methotrexate will post their experiences.

Good luck, and Happy New Year.

Thank you Karen! I will start taking them as soon as I have shaken this infection.

A Happy New Year to you also.

Hi Jasmine

I can say I am fine on Hydrochloroquinine but I do know it can affect your eyes.I have to have a thorough check yearly to ensure the medication is not affecting my eyes.

Never been put on methotrexate.

Hi I have to say I thought methotrexate was poison when I was on the tabs but the injection form is much better 98% less side effects for me it’s taken 21/2 yrs but the dosage of my meds is bang on at the moment and the improvement in joint muscle pain and even the fatigue is better ,my daughter has started methotrexate and has minimal side effect from the tabs so it’s really an individual thing but it works for me now

I also have MCTD as i have positive ANA and anti U1-rnp. Could you please let us know how you got diagnosed w MCTD if no positive ANA? My understanding is that metotrexate comes only after plaquenil is ineffective. Plaquenil is way easier to tolerate compared to metotrexate. It helped enormously w my joint pain. It's even anticancerous. You have to take it after food. The eye issue is extremely rare and when it appears it's usually after 20+ years of use . Igot immunosuppressant (myfortic) after plaquenil only. No metotrexate thou. For MCTD usually myfortic is the immunosupressant of choice. Too bad you cant take steroids. I take them when i have a flare and they bring me back ti life at 10mg only...

Hi Jasmine, I briefly took methotrexate a few years ago. For me the side effects of severe, negative mood changes and confusion far outweighed any benefits. I'm on Plaquenil now, but it does take weeks or even months to start to be effective, which is probably why methotrexate has been suggested if your symptoms are worsening.

If you do go ahead I would strongly recommend making anyone in your support group aware of the possible side effects. I certainly wish my family had been more aware at the time of what was affecting my psychological health anyway.

Best of luck and improved health for 2019.

Hi ! I have been on methotrexate for several years now. I've recently moved house so have a new GP & due to see a new rheumatologist in a couple of weeks & am dreading it as I think he may take me off Metho , albeit just temporarily - it has been a godsend to me. Other medication did nothing for me but since I've been on the Metho my symptoms have been pretty much under control. Hope it works for you too.

I am curious also, about the MCTD diagnosis without a positive ANA and that the steroids were ineffective. Usually, steroids give a huge relief and are utilized to soften symptoms until other meds can kick in. I'm sorry they did not work for you! For me, when plaquenil was not helping alone, I was prescribed methotrexate. I had a terrible reaction to it. My hair fell out and my body died up-- inside and out. Folic acid did nothing to relieve those effects. I later found that I have the MTHFR gene mutation which is why I could not tolerate that med. Many people get good results from it. I hope you do as well! But know that there are other options if it doesn't work.

I'm so sorry to hear that you had such a horrible reaction. My hair is long enough to sit on and that's one of the potential side-effects that I'm scared about. I haven't been able to start the Methotrexate yet as I currently have tonsillitis and a chest infection.

Happy New Year!

Hey Jasmine - welcome to the site.

I am on methotrexate 15mg a week, or 10mg if my neutriphils go lower than 1.5 - you have to have fortnightly blood tests for quite a while to keep an eye on how the drug is affecting your liver etc.. and for the WBC of course. I was on Hydroxy chloroquine for quite a few months when diagnosed originally some years back with Undifferentiated Connective Tissue Disease - but had to stop taking it as it really made me very unwell - bad diarrhea, severe migraines with aura -it became a daily event and I just couldnt function at all. Like you, I am very sensitive to drugs but amazingly Ive had no bad side effects to the Metho Im glad to say... well not that Ive noticed. Its been 9mths now. I saw Shareasmile stated it dried her up inside and out which I can totally relate to(!) - but this has been happening for me for many years pre taking the metho so cant put it down to that. Im just wondering if it has got worse though and I guess it may have a little.. but, positively, I find the metho helps keep the lesions on my hands at bay, and my hair has got thicker after really thinning out which was quite upsetting although it still falls out quite a lot- and my eyelashes have grown back which is great. Im sure its helping with the joint pain quite a lot too (although it has a lot to contend with like you!).. and definitely the (non aura) migraines - but hasnt helped much with the fatigue, but I think this is due to my still working which is extremely intensive and Ive really been struggling for years now/am very worn down. Taking it easy and not over doing anything is essential in managing this disease, whilst trying to keep active and fit (a tricky balance obviously!). Ive just remembered I did have an increase in mouth sores on taking the Metho - and my tongue has been in a terrible way, so my rheumy increased my Folic Acid to daily (apart from day I take the Metho) to offset this, and has helped a little. I too had a month on prednislone (in Feb 2018) at a point where I was very symptomatic as hadnt been on anything but Nefedipine for my Raynauds and Colchicine for the mouth/nose sores for months, plus Vit D3 25uis a day (are you on the latter? Quite important). I was already feeling quite unwell and the steroids made me feel extremely spaced out/odd - I dont think it helped my heart (have AF and leaky aortic vavle) and was just falling asleep on the sofa all the time... or wanting to nod off wherever i was... not what the Registrar expected at my Rheumatology dept either........... But no one reacts the same and some are quite different from the majority... I am seronegative ANA too. However the Consultant Rheumatologist who finally diagnosed me with moderate SLE Lupus in Feb last year, and prescribed the Metho noted this stating he thought Id had the condition since birth (Im nearly 56 now), and am quote significantly hypocomplementemic unquote (ie my complement C3 and C4 are always very low) plus constant leukopenia and present with a ton of very SLE symptoms, with photo evidence through the years. I have also read recently a quote in a new paper by Dr Wallace MD, author of The Lupus Book (I recommend as an extremely thorough read), who states quote SLE patients who have longstanding disease may lose ANA reactivity and become seronegative over time unquote. I recently found a photo of myself at 2.5/3 yrs old with a very obvious/text book malar rash and of course have memories of being covered in awful rashes when very young - which have come and gone in a lesser versions in my latter years but I just ignored/stayed out of the sun as I noted it made them worse. My father was totally anti orthodox medicine (ie no trips to GP so was quite tough for me as a little un I remember) so I was brought up on wheatgerm/freshly cracked nuts/fruit/veg and fish and juicing (very 1960s USA - Dad had a juicer sent over here plus a water purifier plugged into the mains) plus a ton of high quality vitamins which altogether really seemed to kick the symptoms in the doodas. Ive stayed very health conscious ever since and really feel this has a huge impact on any dis-ease activity. Obviously Ive deteriorated quite a lot since my youth and really needed orthodox medication for some years now, as has been quite a struggle, but the results of some of my bloods tests in past 6 yrs due to exhaustion etc just werent being noted by my old GP. Im very grateful to a new GP referring me to Rheumatology and ultimately for the methotrexate and would definitely give it a try if I were you - as I said previously, youll be closely monitored bloods-wise to manage any risk to your liver etc.

Anyway, in the end much of the meds given to treat people with autoimmune conditions are the same- and its whether they work or not (if you can tolerate them) which is the important thing - its just confusing with question marks on your diagnosis from others (professionals or not) hanging over your head, I find anyway.

Let us know how you get on, and I find everyone on here is very happy to help with any further questions etc.

Hope that helps, all the best for an improvement in your health etc in 2019, D

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