Side effects of methotrexate

[Kailacobweb]

Has anyone been on methotrexate and stopped because of side effects, if so could I ask what your side effects were?

[Mota1]

My wife has been on methotrexate for several years (now on 12.5mg). She has increased bowel movements and nausea. These side effects have improved slightly since using weekly injections rather than tablets but she has not stopped using it alongside prednisolone.

[Hidden]

I was on methotrexate but after 6 weeks I discontinued it due to severe headaches and continuous stuffed up sinuses.

[Pat13]

I was taking methotrexate some time ago and felt extremely nauseous however when I saw the consultant routinely with blood test results the methotrexate was stopped immediately as my liver results were unacceptable

[PMRpro Ambassador]

Within days of the first dose my hair was coming out in small clumps and I was permanently hungry - which resulted in me gaining over a kilo in weight in the month I was on it and I struggled to lose it. By the second week I developed joint and muscle aches and felt generally bleugh, I was fatigued and that steadily got worse each week until I could barely walk into the village and back - by halfway I could barely put one foot in front of another. I felt as bad as I had with PMR and NO pred! The feeling was I had developed pred side effects that I had never had before on prednisolone and prednisone - but had with methyl prednisolone. It is warned that may happen - it not only increases the antiinflammatory effect, it can increase the adverse effects of pred.

I had agreed with the rheumy I would take a break to go to an international science meeting - I'd not have managed the travel if I hadn't. It took a couple of weeks to start to feel really better - but I haven't started it again. The rheumy is fine about it.

[Longtimer in reply to PMRpro]

I am in a quandary as to weather this is what is happening to me, but it has been affective for about 10 weeks, then the worst flare I have ever had....I can hardly walk round my house....really struggling (3 weeks now)....I am 5 days in now from going to 15mg from 12....suggested by my Rheumatologist.....no affect.....not sure how long to stay on 15mg.....or to have the MtX injection tomorrow....just wish I knew the cause, so can do something about it......I do know though that I am going to request some scans......any advice welcome, just to help me get out of the chair!...thank you....

[PMRpro Ambassador in reply to Longtimer]

If it were me, I would take at least a week off mtx and see if it improves at all. For me the fatigue was slightly better in days, the aches also improved slowly. The effect of mtx stays in the body for a few weeks but if you already have a major flare at least one of the reasons for being on mtx isn't working. And it is all about QOL - if you are ill, the QOL is a bit poor.

[Longtimer in reply to PMRpro]

Yes, I agree, just didn`t want to complicate things by doing the wrong thing if you know what I mean....... If Rheumie still wants me to discuss relapsesetc on zoom I will have plenty to say, if up to it!

[Devoid in reply to Longtimer]

Hi I have had a similar experience but it turned out to be the methotrexate, I was getting fatigued ++ and hardly able to mobilise as I didn’t experience nausea which I’d been advised about I didn’t put it down to the methotrexate but having had a break due to a dental infection I soon realised I was feeling better, I went back on it and within 3 weeks felt horrendous again. My rheumatologist was very reluctant for me to stop but I couldn’t bare the thought of going back to how I felt . I know it works wonders for some but I was definitely not one of them

[Longtimer in reply to Devoid]

Thanks for that, I am struggling to walk...mostly having to lie down.....this started 3 weeks ago, I stuck with the MTX, and now much worse but will not be doing tomorrow`s injection....we have to rule out to rule in I suppose.Have you been offered or tried any other sparer?.......

[Devoid in reply to Longtimer]

I was on methotrexate for about 4 months before they started tocilizumab, have never really understood why they were so desperate for me to keep the methotrexate other than they were concerned how I would be after the year of tocilizumab. The methotrexate never reduced the inflammation but just made me very ill, I think it seemed to have an accumulative effects on me

[Longtimer in reply to Devoid]

Sorry, I should have read your profile about Tocilizumab....my head is in a weird place today.....Strangely enough my inflammation markers have never been really high.....

[Kailacobweb in reply to PMRpro]

I’m struggling with fatigue, joint pain, headaches, sore eyes and weight gain. Having spoken to my doctor this morning she will contact the rheumatologist and see what he says. I think I would be better without MTX. I have been injecting for about ten weeks.

[AdoptMeow in reply to Kailacobweb]

Hello Kailacobweb! I am wondering what your pred dose before starting MTX and how much you have taken over the ten weeks. My Dr dropped my dose from 12.5 to 10 when I started the sparer. Between the side effects and the drop, I felt horrible and had to stop working. Even without the MTX, she then would only prescribe 7.5. I have become worse each month, and have lost mobility and ability to function. Fatigue and muscle damage are overwhelming. Some doctors just don't think of the consequences of tapering before finding out if the sparer is tolerated and showing improvement.

[Kailacobweb in reply to AdoptMeow]

Hi , I’ve been very fortunate in that I seem to be in control pretty much of my amounts of pred. I ask for meds on my repeat prescription and that’s what I get. With that I can decide when I taper and by how much. I had been on mtx tablets and I’d managed to get down to 10mg then I got stuck so the rheumatologist decided I should try the injection. This was 25ml. I’d got down to 7.5mg pred and felt reasonably good so went down to 7 and it all went wrong. Add in the Covid jab and a UTI with antibiotics and I’ve gone downhill. Gone back to 8mg pred and awaiting help from the rheumatologist/doctor as to where I go now

[pomeranion]

After taking methotrexate I developed MGUS. You can research this disease. It did help with the rheumatoid arthritis but stopped because of hair loss. God was telling me something. I wish I could find something that helped with the pain and finger deformity that I continue to have. I am now suffering with new PMR symptoms and my rheumatologist is not helping to resolve this issue. Fighting her on prescribing Plaquenile until I feel some relief with the prednisone. The side effects of nausea and vomiting I don't think I could tolerate at this time. I'm in so much pain I just sit and cry sometimes. I'm thankful to have found this site. It is nice to know I am not alone. I have already learned so much. Thank you.

[195094]

I had severe diarrhea, nausea, and general not feeling well. I asked to be off it and refused the injections,

[tangocharlie]

I was only on it for a week or two. When I mentioned to the rheumatology nurse I had totally lost my appetite and a little bit of weight it was stopped immediately.

[Longtimer in reply to tangocharlie]

Yes, my family have noticed how little I`m eating.......have you tried any other sparers that have helped at all?....

[PMRpro Ambassador in reply to Longtimer]

I wish!!! I just wanted to eat without stopping! Most unusual ...

[Longtimer in reply to PMRpro]

Yes, I have read you have put that before, and no hair loss for me...that`s why I am confused about what is going on...but we aren`t all the same ........

[tangocharlie in reply to Longtimer]

Before that I was put on Azathioprine but it made me breathless so was also stopped. I'm due to start on Leflunamide next week but am still undecided tbh. I'm torn between 'you won't know unless you try it' vs thinking it is a stab in the dark, there are potential side effects and that it will take up to 6 months until it has any effect. Tricky decisions.

[Longtimer in reply to tangocharlie]

Oh yes, I tell myself I won't know till I try, and we are all different.....but then like you say....read the side effects and don't know what to do....and like you don't tolerate meds!......haven't felt this bad since first diagnosed......something is going on..😏

[tangocharlie in reply to Longtimer]

I'm convinced I have something going on with my mast cells, possibly mast Cell Activation Syndrome. The fact that since I have been taking Montelukast, a mast cell stabiliser my allergic reactions are more under control is further evidence. And when I look up symptoms for MCAS I tick so many boxes, from the allergies, histamine intolerance, rashes, swollen feet, etc etc. My rheumatologist thinks it is mast cells too, but then we draw a blank what to do next as Immunology aren't interested in that aspect of the immune system, just the Ig side, like nut allergies etc. I want them to rule out mastocytosis which is very rare but also a possibility. I'm happy to send you some links to MCAS info if that would be useful? Maybe I should do a post on it as there are quite a few of us suffering from allergies etc along with PMR.

[Longtimer in reply to tangocharlie]

All interesting.....like you, over the years I think the medics don't know what to do with us....I would like to read about MCAS, but it will be next week if I can stay awake!!

I am still struggling with the worst flare for years.......and I'm hoping to be able to go on zoom on Tuesday with my Rheumato logist involving OMERACT as a patient partner 😱.....I want to do all I can to help us comp licated longtimers!.........well that's how I see myself anyway....

Thank you.....

[tangocharlie in reply to Longtimer]

I've been in a flare/relapse for about 6 months now so can empathise. there are days I love doing research and feel great and other days my brain is so foggy I can't remember what I went into the kitchen for. Brain fog and confusion are also MCAS symptoms ...

[Longtimer in reply to tangocharlie]

I was struggling to walk yesterday......h ad to lie down most of the day.....woke up about 3 weeks ago with it full on....but my family keep saying how bad I have been this last year......

[tangocharlie in reply to Longtimer]

My feet ankles and lower legs are too swollen to walk far these days. As I said to my rheumie I'm getting worse not better. Things really started to go badly wrong when I was forced to reduce the dose of the steroid injections in April, things have just spiralled out of control since then. Yet we are constantly being told the doctors know best .....

[Longtimer in reply to tangocharlie]

Doesn't Dr Mackie back you up to be on the right dose?......Is she your Rheumatologist?.......

[tangocharlie in reply to Longtimer]

Yes she does but I had to go back up to 40 in Dec and am struggling to get below 20, so we are both concerned. To think 5 years ago I was stuck on 5 .... should have left well alone!

[Longtimer in reply to tangocharlie]

OH dear, I am struggling with blurred vision and balance at 15mg.....I have always said I will hold a party when I get to 5mg!....It`s amazing really how the body can take all these ups and downs of pred.......not good....we battle on....

[tangocharlie in reply to Longtimer]

I've got blurred vision too, am hoping to go get my eyes tested in a few weeks when I've had the jab. No other signs of GCA so I'm not worried as it is listed as a common side effect of Pred.

[Longtimer in reply to tangocharlie]

Had blurred vision from day one with pred......it has been one of the main reasons making me housebound, obviously not being able to drive....balance problems too.....

[tangocharlie in reply to Longtimer]

Oh dear, sorry to hear that. I didn't have it first time round but then I as on max 10 Pred and this time much higher. I have always had balance problems, but no one connected them with PMR, I presumed it was my complicated eyesight problems

[tangocharlie in reply to Longtimer]

PS I sat in on one OMERACT zoom but it was way beyond my comprehension so will leave it to the likes of you and PMRPro! Are you under Dr Mackie too?

[Longtimer in reply to tangocharlie]

Now you have worried me!!......I will just listen hopefully, did you partake at all? The subject seems to be Remission and Relapse.....I'm expert on relapse, but remission, only remember that 1 month after going on steroids 10 years ago!.....not any more.......No, not under Dr Mackie, but Dr Max Yates.......she is listed with the others....

[tangocharlie in reply to Longtimer]

Not being scientifically trained it was all gobbledegook to me. I can only deal with Plain English, but there is nothing wrong with that, Eistein supposedly said that you don't fully understand something unless you could explain it to your grandmother. And I suspect many people involved in PMR research don't actually understand what it is like to have PMR or GCA, hence trying to get us patients involved. I wish they woudl research what WE think is important rather than what they think is important.

[PMRpro Ambassador in reply to tangocharlie]

I've just asked a friend on the lupus forum if she knows of MCAS experts - she is also under consideration for it. She gave me a name in London and thinks there is one oop north ...

[tangocharlie in reply to PMRpro]

That'd be great, thanks. There is a Dr Croom in Leicestr and Dr Peers somewhere, both fully booked for the next decade as they are flooded with people suffering with long-Covid, which enlightened doctors think is connected with mast cells

[PMRpro Ambassador in reply to tangocharlie]

I suspect that may well be a major problem - as with anything that is suddenly trendy. OTOH - it may become more popular!

[tangocharlie in reply to PMRpro]

They are charging £250 an hour so suspect that will attract new entrants. But also, finally, the NHS is setting up clinics for long Covid which should help others with things like CFS, post-viral fatigue, after effects of Lyme etc - all possibly linked to MCAS. Who knows, maybe PMR fatigue will finally be taken seriously too

[PMRpro Ambassador in reply to tangocharlie]

Hope springs eternal ...

[tangocharlie in reply to PMRpro]

Now that it's men and younger people struggling too rather than just 'old women' things will start to happen.

[PMRpro Ambassador in reply to tangocharlie]

Mmm - but will they extend it to existing a/i disorders?

[tangocharlie in reply to PMRpro]

It won't happen overnight but it's a start, I think more people with CFS will be putting their hands up and saying what about me? They already are on social media platforms

[AdoptMeow in reply to tangocharlie]

Hi tangocharlie. I started Leflunomide on Feb 1. My Dr said it starts working in three months and reaches full effect in six. The problem is she thinks the pred should continue to taper now, even though I'm the worst I have been since starting May 2018.I just begged to go back to 10 mg this week. As others have written, maybe if we could just taper according to how we feel, we could get down to a maintenance dose without the "sparers". One month of MTX last year was a disaster for me and caused me to lose my part-time job. The prednisone was decreased too soon, and I could barely get up or walk to tend to my hospice patient.

[PMRpro Ambassador in reply to AdoptMeow]

One problem is that they aren't aware of the fact that not everyone can just take a long period of sick leave. And since they have never had PMR/GCA, have never taken pred and nver had to balance work/chronic illness/medication and living they don't see it in the same way we do.

[tangocharlie in reply to AdoptMeow]

Thanks for the info on LEF. My gut instinct says that as the main problem I have now is controlling over-active mast cells that Lef will do nothing for me, but I still have nagging doubts that I don't know unless I try. I aksed for other people's experiences a few months ago and a few people said it had helped them,but othrs said it hadn't.

Totally agree with you re tapering. I was in my early 50s when I got PMR and really struggled to work and as I was self-employed it was a nightmare. I finally admitted defeat 3 years ago and was forced to go on benefits, but that process was so complicated and took 2 years to get. I had to admit to myself that I was just not capable of working anymore though, I had a debilitating chronic illness. Keeping calm and carrying on was not an option.

I'm convinced that the majority of problems for people with PMR are caused by reducing Pred too soon or too quickly, whether that is on orders from misguided doctors or our own impatience because we all want off steroids asap, or a mix of the two. What we need is a proper clinical trial comparing say the Quick and Kirwan method to standard guidelines to establish the facts. If I won the lottery I'd fund it.

[tangocharlie]

Great news that TCZ is helping. Unfortunately we can't get it in the UK, not for 'just' PMR anyway, only on designated one-year trials for GCA or LVV. That might change as it is now being used for serious Covid patients

[springeramber]

Hi AllI am feeling worse than I have for the past 2 years - was diagnosed with GCA but had none of the correct symptoms and headaches stopped as soon as I was put on pred -I have no flares apart from ESR going up. All I have had are the side effects of pred ie ruptured tendon, fat face, thin skin, fungal toenails and curly hair! I have felt fine (until I got anemia) I got down to 10mg and was put on 15mg of methotrexate in September - fine until last 2 months when I have felt increasingly fatigued and nauseous one or two days after the methotrexate, nasty dose of the runs the other day!! Contacted rheumy nurse who has put my folic acid up but missed the call from the consultant and I am concerned about my GGT which has gone up so I am going to call my GP on Monday

[sherib1]

I have been on Methotrexate for three months. I have also been taking Prednisone for the past five years. My doctor has been decreasing my Prednisone for the past two months until I finally am able to stop it altogether. The beginning Methotrexate dose was 12.5 and it made me very sick to my stomach, so tired, and no appetite. It has been decreased to 7.5 and all of the side effects are gone. I am anxious about having my next labs because there were changes that my Rheumatologist did not like last month.

[sherib1]

I have been on Methotrexate for a while and still taking it. I am tired, sick to my stomach, and loss of appetite. It is affecting my ability to keep my blood sugar down because I am also a diabetic. I have other problems that are autoimmune related.

[PMRpro Ambassador in reply to sherib1]

Time to say no - there are no guarantees it will make a significant difference to your PMR and the recommendations say it should be used in individual cases afer discussion and agreement with the patient. It isn't worth it in PMR if it makes you feel worse or impinges on other medical conditions.