Seeking advice about methotrexate intolerance and biologics - How much is too much?!

[Katie6221]

Hello all!

My name is Katie and I was diagnosed with RA around 3 months ago, at the age of 22. My first (and ongoing) flare began around 8 months ago. While living in the US, I received a misdiagnosis of pseudo-gout and was subsequently treated for the wrong disease for around 5 months.

After moving to the Netherlands a few months back, I demanded a referral to a rheumatologist. I have now been taking methotrexate for 11 weeks (9 with pills and two injections) and so far it has been hell. Thus far I have only experienced relief from taking prednisone (with or w/o methotrexate, doesn't matter), which makes me an emotional loon. Each time I come off the pred, the symptoms come back with a vengeance.

I realize that I have only recently begun the injections, and am aware that I may need to continue them for a while longer to truly see whether methotrexate might have an effect, but I just wanted to know if anyone has shared/shares my experiences with this medicine and also experienced with my rheumatologists' unwillingness to hear me/express concern when I say that my symptoms are extreme.

Without too much detail, here are the symptoms I experience on a daily basis:

Complete loss of appetite/aversion to most food, stomach cramps, low body temperature (on average it is 1.5-2 degrees cooler than what is normal for me) insomnia, night sweats, tinnitus, muscle weakness, fatigue, acid reflux/indigestion, waves of nausea, severely uncomfortable bowel movements, weight loss, dizziness, aches and pains throughout joints.

Needless to say, my daily quality of life and physical, mental and emotional wellbeing are truly suffering because of these symptoms. I have expressed concern time and time again, with no reciprocation of concern from any rheum. How much is too much?? Does anyone else feel as though their rheumatologist cares only about numbers on blood work, with no regard for general health and wellbeing?

I am a very health conscious person, and have been since around the age of 16. I eat a primarily meatless diet, with lots of fish, veggies and fruits, and minimal grains and dairy. I am very conscious about exercise and do a million things during the day to mitigate stress. I am doing everything in my power to regain some balance and control in my life, but it seems nearly impossible when feeling so terrible each day.

I'm a strong person with a high pain tolerance and am more likely to grin and bear it than admit when enough is enough. Basically, I just want someone to tell me: am I crazy for feeling that my body is trying to tell me that this medicine is not right for me??

Also, if anyone has insight or experiences with biologics, any and all information would be appreciated! (Have read official info many times, so am interested more in personal experience, though I am aware each person is different!) Advice from anyone dealing with RA in the Netherlands/Europe is also welcome!

Thank you in advance and well wishes to all!

Katie

[Cynthialcj]

I had symptoms like that and found out I'm allergic to it. There's other meds. My pain was,relieved best with prednisone..but I was like you plus i gained weight and my fingernails were peeling off..I changed my rheumatologist. There are good ones out there..Im on my 5th ra med. They must not realize how much pain were in ..it's the worst pain..and nothing helps it but RA meds. Let me no who your doing. I hear you. I'm so tired of the pain. 3 + years

[Josm]

I have had a similar experience

I am 70 years old and only started with symptoms a year ago after my husband died unexpectantly

After being diagnosed with RA I was put on Methotrexate which worked for a short while then I had vicious flare ups which could only be controlled by cortisone

Was also then diagnosed with pseudo gout and was cynically enformed that my bloods were excellent so most of what I felt was in my head because of the loss of my husband

I changed specialist and what a difference!

Was told that often symptoms occur in spite of the blood levels being normal

Was put on a basket of drugs

Arava,Nivaquin, Methotrexate and Puricos ( which is for gout )

Also folic acid and Nexium and a Vitamin B and Calcium combination

Still have occasional mild flare ups which I control with short courses of cortisone but by and large am symptom free for longer periods

The new specialist reckons that I will have fewer and fewer flare ups into the future

I have regular blood work done to monitor side effects from the meds but am in a much better space

Also exercise and try to eat as healthily as possible

Hope this heips

[Leonwp]

Hi Katie, im so sorry this hateful disease has hit you at 22 in an almost identical way as it hit me just after 50. Every single one of the symptoms you describe i can tick box 100%. In the end i started showing very poor liver enzyme levels and was taken off MTX. I was then tried on 2 bio therapies Cymcia and then Etanercept, with both i was fine after first 2 doses with mild irritations and side effects but nothing serious, then within a few hours of the 3rd dose i went rapidly into anaphalaxis and/or adrenaline criscis and both times woke up in hospital recussitation having been jabbed with adrenalin and anti histamines. The Rgeumy discussed with me Ritoximub but having read up on it given my previous reactions i declined. I now get by with Predisolone and Hydroxychloroquin, but i am in a constant state of flare and take tramadol and Targinact (oxycodiene) to at least reduce the pain. I am hoping the Netherlands studies on electronic implanted neuro blockers is as successful as it appears i think that holds the best hope for those of us with fast onset acute and chronic RA. But i do envy you bring in Netherlands and being able to get cannabis without a problem as in UK we still cant even get it on script and im sure it would reduce my opiate intake anf cause me less harm. I hope you get more help soon. Blessings.

[Katie6221 in reply to Leonwp]

Thank you so much for your kind words of support. Indeed, I do feel incredibly lucky that I live in a place where cannabis is so easily accessible to me. I can say without a doubt that the only reason I have managed to tough it out despite these symtoms for so long is because of my new best friend, Tangerine Dream. Each person responds to/processes CBD and THC differently, so this strain is not for everyone, but after doing my fair share of research and sampling, I have learned that this strain - along with others that fall within the upper limits of THC/CBD content - can truly help ease the side effects of the medicine, the day to day stresses of the disease and in a mild way, also the pain and inflammation.

Have you ever looked into CBD oil? I am still searching for an organic variety here, so I do not yet have personal experience with it, but this should be something that could be found relatively easily in the UK (correct me if I'm wrong).

Some people experience relief after using the oil (tincture, capsules or topical oil) for a period of time, and some people do not, though I have not yet heard of any adverse effects- so I can't help but wonder, why not try it?

[Leonwp in reply to Katie6221]

Thank you for your reply Katie, i will hunt down Tangerine Dream if im able at some point. The even more ridiculous situation is that someone from Holland took the UK government to Brussels court and one because he was Dutch and staying temporarily in the UK and had been prescribed cannabis in Holland, he basically argued inder the shengren 75 agreemrnt he had the right to bring cannabis to UK and smoke it. Well he won! So he can do that as long as he doesnt stay in UK more than 30 days. But there is no right to do it if you are s UK citizen. How ridiculous is that?. Unfortunately i am so disabled from the disease that i now have a flat in a care facility, which is very good BUT one of the rules is no drugs, so if i was caught they could evict me andas it is purpose made for a wheelchair user it would be a disaster. If i lived anywhere else i would not hesitate to break the pathetic laws here and just use the cannabis anyway. I have tried cannabis oil vaping but i guess maybe too much is taken out because it did nothing but taste foul unfortunately. Thank you again.Blessings. Leon.

[Beaches2]

Hi Katie and welcome to the site

It is very early days for you with the meds. It took almost a year and and adding in different drugs to get my sudden onset RA under control.

I hated taking mtx at the start, it made me feel awful and wiped out 2 days of the week I was so sick with it......all that eased over a few months and now it's ok. My rheumy upped my folic acid to 6 days a week and that seemed to help.

It's difficult to know how much to put up with re side effects. I was desperate to get things controlled as it was so bad I was really scared, so I stuck with it, we quickly added leflunomide ( not so many side effects for me) and then because I was still a mess, biologics were added so triple therapy.

Even then, my first biologic didn't work ...... I was needing steroids regularly. Then we tried abatacept and bingo, it worked and is still working 2 years later.

You need to feel confidant that your rheumy team is working with you. Ask for a treatment plan so you know what else you might try and how long you will be expected to give each drug to know if it's working or if you can tolerate it.

It does get better once you are settled on the drugs, but it does take time.

Good luck on your journey.

[Keana]

I took methotrexate for about 2 weeks and then stopped for most of the reasons that you had. I have had Rh A for over 40 years so I know whether my condition is improved or not so I told the Consultant this and he said that no one else had reported such side effects! I told my wonderful GP what had happened and he spoke personally to the consultant and backed me up as to my feelings. The consultant immediately changed my medication and I haven't had any problems, except that, after 5 years he wants to take me off again. He said to cut the dosage in half so I did for a few weeks and my Rh A was worse. Consultants may be experts in Rh A but they don't know your body as well as you do. Good luck

[Katie6221 in reply to Keana]

My rheumatologists also tell me that no one has reported many of the side effects that I am reporting... Unfortunately, because of this fact, they refuse to acknowledge any correlation between the way I feel daily and the methotrexate.

Often they ask me if it could be possible that I have experienced these symptoms previously, but didn't notice them as much before (indicating that they were onset as a result of the RA and not the meds), but due to my delayed *true* diagnosis, I was able to live happily and healthily with manageable pain, very little fatigue and no other symptoms for the first five months of my flare up.

You're absolutely right - no one knows my body better than I do, and I need to work harder to be more assertive and vocal when I truly feel that enough is enough.

[Joy_1 in reply to Katie6221]

Hi Katie,

I started taking MTX in Nov 2015 when my first immunosuppresant, Azathioprine failed to work.

I like you and many others had various side effects. Here's how I 'control' the key ones that effect me:

1 - for nausea - 5 mg folic acid every day except MTX day (it took about 2 weeks to become effective)

2 - feeling wiped out the day after MTX day with an almighty thumping headache - drink 8 glasses of water on MTX day (I usually drink 6 glasses a day)

3 - horrid bulbous mouth ulcers - bath mouth in saline (warm salty water) about 5 times a day for 48 hrs

By doing the above I have not just reduced the above but wiped them out.

Wishing you all the best.

Joy

[Janclebro in reply to Katie6221]

Hi Katie, I too was on methotrexate, though I gave up after seven weeks. I begged my rheumatologist to put me on injections to bypass my stomach, but he was deaf to my concerns. My reaction to the drug, plus others I was taking, was so severe that my life was no longer worth living. The severe symptoms started immediately on the day I first took it. In spite of daily folic acid, I was eventually nauseous seven days a week, but this was nothing compared with the other symptoms, including suicidal thoughts. I decided I would rather live with severe pain and insomnia than the hell that my life had become, and I stopped taking it after only seven weeks. I have since realised that many of the symptoms were caused by several new food intolerances that I didn't have prior to taking the drugs. I believe that methotrexate has attacked my gut lining and caused the decline in my health. While taking it I had my first ever outbreak of psoriasis, and have had another since. Nearly two years later I have still not regained the health I had prior to methotrexate. Taking it is the biggest regret of my life. I'm keeping symptoms under control with a really strict diet and have regained some of my quality of life. I hope by now your issues are well on their way to being resolved.

[helixhelix]

11 weeks is not long, but those side effects sound pretty extreme. I had many of them but to a lesser degree than you from your description. And after about week 9 i could feel them slowly fading. Generally in the U.K. the docs like you to try things for three months, so I reckon you've given it a good go. Time to start pushing for an alternative.

There's a member on here Bassiefromholland (all one word) who's very helpful but may not see your post. You could send him a private message perhaps?

[Katie6221 in reply to helixhelix]

Here in the NL, doctors also push for a full 12 weeks of trying each treatment, which is why I have chosen to stick it out for this long despite my misery. I agree with you, though, it is definitely time to start pushing for an alternative. Thank you so much for your support.

And thank you for connecting me with bassiefromholland!

[Hidden]

I was on methotrexate between the ages of 17-21 and it was the worst. The side effects were so bad that I decided to wean myself off this nasty drug and chose being in constant pain instead. I'm now on humira which has been a revelation! I'm not saying the same drug works for everyone but you know your own body and if it is affecting your life so much you have a right to try something else.

[Hidden]

You poor lass!

I think most folks on here can empathise whole heartedly with you. Sorry this stupid diesease has hit you so early in life.

I had all of the symptoms you describe before meds. Interesting what you say about low body temp. Mine has been low since disease hit, but no one seems interested!

Things actually got 100 percent worse for me on sulfasalazine. It was hell. Again, I was not listened to, I think there is a certain amount of cognitive dissonance amongst doctors with regards to side effects! In the end things got so bad on the sulfasalazine that I took myself off Hey presto! Racing thumping heart, seriously high blood pressure, tremor and psychotic depression from hell stopped. This drug is now marked in my notes as an allergen.

It does take a while to find the right drug. We all react in different ways to drugs, and what works for one causes someone else misery. I won't take methotrexate because of the mood side effects. There will be a drug, or combination of drugs that works for you. It's hellish trying to find them, but I'm sure you will.

In the mean time you have come to the right place for support.

Take care

[Katie6221 in reply to Hidden]

I am so interested to find another person who experiences a reduced body temp! My rheumatologist is convinced that mine is caused by my own anxiety and claims that it will go likely away after I express my concerns to a GP. Do you experience any negative side effects as a result of the low body temp? I often wake in the night in a full sweat, then get up to find that I have chills and usually then have to bundle up in thick clothes wrap myself in blankets to fight the chills. I have read that a low body temp can produce effects in the body that are similar to flu symptoms, though I cannot say whether my symptoms come from meds or body temp specifically.

[Hidden in reply to Katie6221]

Yup!! Exactly the same thing. I wake in the night pouring with sweat, think I might have a high temp, and its low at 35.2.

A low temp actually makes me feel terrible. In fact any time I feel really awful my body temp is invariably low. It's always very low in the morning, but gets higher by the afternoon.

The low body temp became long before I ever took meds. I suspect it's something weird to do with inflammatory process. It will be interesting to see if body temp improves when the right meds kick in, and I'm no longer symptomatic.

[Katie6221 in reply to Hidden]

How odd, that describes how I feel exactly! For me, it also only ever happens in the night, normally between 3 and 6 am. During the day (naturally, the only time I am ever able to see a doctor) my temperature is completely normal.

Have you ever heard of wilsons temperature syndrome? I have done my fair share of research since my symptoms have been ignored, and I have a hunch that it could have been caused (in my case, at least) by stress and the shock of the onset of the disease.

[Hidden in reply to Katie6221]

Yes I've heard of it.

May I ask what your mood is like in the morning? I get a crushing depression, which wears off as the day goes on.

[Katie6221 in reply to Hidden]

I would say that I feel pretty similar to what you are describing. My mood is also thrown off currently due to prednisone, but I'd say even without the pred, I experience much of the same.

For whatever reason, when I cannot sleep during the early hours of the morning, I am usually quite content and in an oddly okay mood, despite not being able to sleep. If I'm able to fall asleep again, it's never for very long, so after that period, I'm quite grumpy and usually have no inspiration to do much of anything throughout the day.

To be quite honest, there are a lot of mornings that I feel like doing nothing and seeing no one. One thing that has helped me immensely has been one particular strain of cannabis. I have also observed that for myself in particular, using the cannabis helps to raise my temperature slightly and ease the chills so I can get back to sleep successfully.

[Hidden in reply to Katie6221]

That's interesting. I feel OK if I wake up at four or five. I feel crap when I wake at seven!

Also interesting, that I have had some really nasty colon inflammation. Have had diarrhoea for over a year. I developed diverticula disease despite eating a plant based diet! Recently I started eating more fermented foods; such as kimchi, soy bean curd, live yogurt...andso on.

My gut feels better, and this morning I woke and felt fine (though that may be a fluke!). Having said that, the gut and the brain are pretty much linked. My temp is still low though. Who knows??

[Hidden in reply to Hidden]

I also went of loads of different foods. Can't even look st meat anymor. Can't eat bread either. Weird!!

[Katie6221 in reply to Hidden]

Hmm. I am also starting to up my intake of fermented foods. Good luck to you! I hope it provides some relief. CurrentlyI am testing the waters to determine whether I am negatively impacted by nightshade vegetables. I also take krill oil, astaxanthine and vitamin D supplements.

[Hidden in reply to Katie6221]

Thank you. Sorry I got off track somewhat. I wish you wellness too.

I do think in my case all my health issues have been caused by some pretty awful life stresses a sick son, four deaths of loved ones in a short space of time. And then redundancy!

[Katie6221 in reply to Hidden]

Have you ever tried using essentialoils to influence your mood? It seems like a drop in the ocean (pun intended), but I have found particular scents -for me, peppermint and Swiss pine- to be extremely helpful in lifting my mood and setting me off on a positive note in the morning and evening. Comforting teas can also have the same effect of you prefer!

[Cynthialcj in reply to Katie6221]

I hope we can use cannabis soon

[Cynthialcj in reply to Hidden]

I have 3 hours of depression, lazy feeling and can't move well., my hands fumble . If I may butt in here ..good reading for me also

[Cynthialcj in reply to Katie6221]

That's me I can awaking in a full sweat then right after calls like I'm ice..I haven't taken my body temperature..but I often felt flu like when I was on methotrexate..

[Eiram50 in reply to Hidden]

That's interesting - does methotrexate cause mood swings/ low mood? I e been feeling inexplicably low in mood the past week or so ( so very unlike me) and wondered if it was just fatigue? My methotrexate was doubled a couple of weeks ago?!

[Hidden in reply to Eiram50]

I believe it does cause issues with mood. My rheumatologist hasn't given it to me for that reason. However, I'm bipolar anyway. Life sets me off!!

That said, sulfasalazine is well know for causing mood problems. It sent me bat shit ( as my son lovingly calls it!).

[Eiram50 in reply to Hidden]

Batshit? Haha- as good a description as any I guess??

I've felt pretty batshit over the past weeks so may talk to rheumy about it.

Thank you, marie

[Hidden in reply to Eiram50]

Do, and don't let them gob you off!

[Rafrancie]

Hello Katie, sorry to hear of your experience with methotrexate. Being that I also have a chronic liver condition I was limited to hydroxychloroqine for years. Still getting flares regularly, but also had prednisone on hand for this.

Finally, last year started Methotrexate. I was given folic acid at that time. Moved onto injection once a week, very tolerable for me and did help with flares and swelling in joints was much better. Last week after injection I got very ill. Much like you I had no appetite, nausea and vomiting. This other symptoms were like having flu. It dawned on me I had been out of the folic acid about week before injection.

I believe that is what caused the awful reaction. I didn't see you mention folic acid, if not part of regimen, this could be causing the problems you are experiencing...

[Katie6221 in reply to Rafrancie]

That is entirely my fault for failing to mention- I do take a single, weekly dosage of folic acid. I have read that adjusting the folic acid dosage to a daily amount can help with nausea and other GI tract issues, so I mentioned this as a concern to my rheumatologist, and instead of upping my folic acid, she chose to prescribe me an anti-nausea medication (taken once, one hour before methotrexate). Needless to say, this single dose of medicine did nothing to help me in the long run, as my symtoms persist daily and are not concentrated around my medicine days.

[popsmith1874]

hi i think the majority off us have all these symptoms you have and ive had this since 2014 and have worked my way through the Dmards and am currently on a Bisomar[Benepali] 50mgs and methetrexate 20mgsplus various other meds and have been doing well the first 3 months but im starting to get problems again was at specialist nurse just before Christmas and she wants to give the Benepali another 3 months to see if it kicks in but i know my body as we all do and im going to get a steroid injection in both hands to tide me over as i can hardly straighten them.Your right about the rheumy consultants in not believing people about their symptoms i was quite reserved at first when i went to consultations but ive learned now to stick up for myself more when i go and if i dont agree with something i say my piece. Hope you get meds sorted and are a bit more pain free xxx

[Eiram50]

Hi

I am sorry to hear about your difficulties. It

Can sometimes feel that the meds they give us cause more

Pain and complications than the initial condition!

I have been on methotrexate 20 mg for about 12-16 weeks

Now and whilst it does Make me sick, headachy and generally lifeless

The biggest difficulty is it is offering nothing positive in terms of

Pain or impact on the disease .

I am also on weekly enbrel ( biologic) injections . This is my second

Biologic and again, is doing nothing to slow

Progression of disease or significantly reduce flare ups.

However, it can take longer for some to see the benefit so I will

Stick with it in the absence of anything else at the minute!

I wish you luck on your journey

Marie

[Hidden]

Hi again

I just think I've found a clue to my low body temp. I reckon it might be the amitryptiline I take. I'm pretty sure the problem coincides with starting this for pain. Do you take it?

[Katie6221 in reply to Hidden]

Hello again!

That's interesting- no, I do not take that. But hey, you never know! What causes my issues is likely different than what is causing yours, so that could be it.

[Hidden in reply to Katie6221]

Apparently many drugs can cause a low body temp. You never know!

I've cut down the supposed offending drug to see what happens.

Good luck with your treatment.

[Katie6221 in reply to Hidden]

Good luck to you, as well. Hope you find something that helps, soon!

[RichardG]

For me methotraxate worked after about 3 months but I still had flare ups and 2 days of nausea after tacking the methotraxate. At high doses (25mg) methotraxate gave me a very painful tongue so Plaquinal was added which worked OK and life was bearable but not great for about 2 years. After having sight problems Sulphazalzine was added but the stomach cramps were so bad I stopped taking this. The real breakthough for me was the biologic Humiria which has given me a pain free, back to normal life for over 3 years now. I felt much better after only 3 weeks of Humiria (injected every 2 weeks)

Hope you can find a treatment that works for you.

[RichardG in reply to RichardG]

I should clarify I stopped plaquinal when I started sulphazalazine