Methotrexate and nausea.

[gaspajack]

I have been on methotrexate epi pen for a while now and need to tell you all they are marvellous! But need to know how many if yous suffer from nausea as a side effect I suffer really badly from it and thought it would wear off but it doesn't , I have skipped several injections now just to avoid the sickness which lasts for days not hours and feel normal again the nausea was taking over my life more so than the arthritis does anyone else suffer this bad and yes the pain is back!

[Jacki08]

Hi--- I suffer with nausea on mthx tablets-- told my gp who prescribed some anti sickness pills and they worked a treat. Its worth ringi g your gp Good luck x

[gaspajack in reply to Jacki08]

I have so many other pills too take I will rattle soon lol I hate that Monday feeling on injection day and I might see about anti sickness drug cyclazine just feeling fed up at the mo I hate the sickness more than the pain!

[Jacki08 in reply to gaspajack]

The pain is my biggest bug bear so will swallow anything to relieve it. It does get you down-- the whole RD thing does--- but I try to keep smiling x

[Hidden]

How much folic acid are you taking? Many people find increasing this helps. You can take it up to 6 days a week in agreement with your Rheumatologist of course. If it's so bad you're skipping doses you really need to let them know. x

[gaspajack]

I take 5mg of folic acid on a Friday however I have had a gastric byepass so take multi vitamins and minerals daily which includes 100% of my daily needs of folic acid I think I may be the odd one out here lol .

[nomoreheels in reply to gaspajack]

Just make sure that it's not daily amount for an otherwise healthy person, a person who doesn't need to take MTX. Since I changed from 5mg the day before & the day after injecting to every day except MTX day I've had no nausea. Your Rheumy nurse will be able to advise if your multivitamin has enough folic acid to replenish what's lost through MTX.

[gaspajack in reply to nomoreheels]

Yer it's down to rheumy nurse now!

[justlizz]

I have gone on to injections as I was vomiting up tabs I still have the sicky feeling but not as bad I find if I take it easy the day after it helped and rather than eating large meals I snack on toast and crisps helps

liz

[gaspajack]

Cheers liz but I have tried loads of different foods it is something I will have to put up with or just stop taking the meds and as the saying goes grow old gracefully.

[Hidden]

You really should speak to your rheumatology team and get some advice. If there's nothing they can do to help stop the nausea then maybe you need switching to a different drug. Do you have access to a specialist nurse helpline? It saves waiting until your next appointment x

[gaspajack]

Specialist nurse booked for end of the month let's see what happens

[helixhelix]

I inject just before I go to sleep (literally! Sometimes OH finds the used pen lying on his pillow) as if I go to sleep straight away then it's reasonably fine. If I don't do it that way then I do feel sick for a day.

[Chmbrln]

I know this is for tablets but have found taking the tablets with yoghurt helps. Altering the time of day can also help. There is I believe some research going on about the best time to take medication for it to work best. The only results I've heard are for blood pressure pills where more heart insidences happen early morning so many medics themselves take b p pills in the evening.

[gaspajack in reply to Chmbrln]

I take BP tablets at night and when I was on methotrexate tablets I took them at various times of the day with and without food and staggered them but the sickness got worse so switched to sub cut methotrexate still I have sickness to the extent of being sick it works for most but not all its trial and error.

[bencar]

I have been suffering very badly with nausea for 2 days after taking my 10mg MTX (I take folic acid on both these days). Added to that in the last week I have had headaches, they begin with visual disturbances when they go the headache arrives which after about 3 hours then subsides. This has happened 8 times in 7 days this part of last week and this week. Just keeping my fingers crossed it didn't happen yesterday. I was in touch with my Rheumy nurse and it was suggested I cut my tabs by 1 and see how I go on, or, if I like I could stop them for about 3 weeks to find out if they are causing these headaches. I'm in an absolute quandary to know what to do. It's very worrying when suddenly you start to get visual disturbances. I started on MTX in June after a long period (18 months) in denial and trying to resist taking such toxic medication. I am feeling that I'm out on a limb, having not seen my Rheumatologist since last Feb. ringing up and trying to get an appointment and being told there is one in the pipeline for November. We have now reached the middle of November and no letter with an appointment has arrived. Has anyone else suffered those type of headaches while on MTX?

[JamieRN in reply to bencar]

Hello are you on hydroxycloriquin ( Plaquenil) also? If so Plaquenil is KNOWN to hurt your eyes. You must see an eye M.D. EVERY 6 MONTHS to check for permanent eye damage. It's essential. I see a ophthalmologist who specializes in RA ONLY. BEST of luck

[bencar in reply to JamieRN]

No, just on 10mg MTX (4 tabs, now being reduced to 3) I'm hoping the reduction in my medication will help. I feel the side effects are actually worse than the symptoms of the disease.

[gaspajack in reply to bencar]

My rheumy nurses appointments are normally easy to get however a good consultant isn't so easy to get and when you do find a good one as I have there appointments are far and few between . I take 20mg and was thinking of asking to have the dose reduced to see if it makes a difference

[Kathyfitz12 in reply to bencar]

Yes I hsd headaches & nausea.....I saw my Rheumy & hevtook me off Mtx...I had been on it very successfully for .6 years .......the headaches ,nausea .& eye disturbance have subsided.

I am now waiting (5 weeks) to see if I go back on Mtx or if I have to change meds.

Hope you get sorted..........Kathy

[JamieRN]

My MD recommended me to space my doses out. He 're prescribed in smaller mats and instead of a whopping dose in one day that made me nauseous for a week, he had me doing it 3 times a week in smaller dose. It made the nausea go away but eventually had to stop the MTX because my blood count dropped to 6.9 ( I'm a RN AND we transfusions patients when their hemoglobin is 6!) It also shut down my thyroid. I have been 100 lbs my entire adult life without trying to be and all the sudden I was up to 118. They checked my thyroid and it was shut down. So in was taken off the MTX. MTX is a chemo drug so you have to expect chemo type affects. Hope this helps

[nomoreheels in reply to JamieRN]

No, not really very helpful for newly diagnosed members starting on MTX JamieRN do you not think? Often the first contact we have from new members is when they're reaching out for help & advice, who are not only struggling coming to terms with being told they have a chronic disease but the likely need they'll have to take meds the rest of their life, seriously strong meds compared to maybe the odd paracetamol they may have needed previously. Because MTX is known as the go-to starting treament & as such their first introduction to disease modifying meds, particularly for the more aggressive forms of the disease, invariably there is a sense of fear in their questioning or even delaying of taking it. Low dose MTX has well proven effective qualities & after exhaustive trialling it was introduced for the treatment of RD because of it's presumed antiproliferative properties. That said it appears it's still unclear how inhibiting proliferation of the lymphocytes thought to be responsible for synovial inflammation in RD for one day a week gives effective suppression of disease activity. Nevertheless it does & has been a life saver for countless patients in very real need of suppression of an otherwise debilitating, not to mention life changing disease which also, if left uncontrolled, puts us at greater risk of heart attack or stroke. We are well monitored whilst taking it for good reason, I accept that, it is a cytotoxic drug after all, & excepting those who are unable to tolerate or are unfortunate enough to experience the rarer side effects, which let's face it can happen with the most ordinary of meds, it has the ability to allow people live near normal lives again with side effects often are tolerable if folate is replenished. Personally I'm prepared to have monthly blood tests to ensure all is well, it's certainly preferable to the me not taking it!

I'm sorry you couldn't continue on MTX but surely being that the thyroid affects around 1 in 20 people in the UK & that there are many different thyroid disorders, the most common being an autoimmune thyroid disease which is known to go hand in hand with RD so not too unusual, is it not beyond the realms of possibility that you may just have been diagnosed with hypothyroidism anyway, not necessarily due to MTX?

Here on our site we have often attempted through our experiences to reassure people who have naturally but maybe unwisely researched a drug they have been prescribed & happened upon less reputable sites. In the case of MTX possibly focussed on that it was first used in higher doses as a chemo drug & not that it was found that when used to treat their condition it becomes a different class of drugs, DMARDs. It's most unfortunate the connection is made & unless fully informed of this disparity I'm sure can be of great concern. The fact remains used at much lower doses for RD it can be very good at controlling us & certainly not everyone suffers the chemo type effects, even fewer generally if the lost folate is replenished accordingly.

I'm sorry if I've rambled on but we have to bear in mind we are all different & as such we each react differently to meds prescribed in an effort to control us & what suits one person doesn't necessarily suit another. MTX will always be a moot point but, & I think I speak for everyone on here who's benefited from it, it an excellent med for many more than the unfortunate one's who have needed it to be withdrawn, for whatever reason & really should exercise prudence if we've failed on a med or a med has failed us.

[JamieRN in reply to nomoreheels]

Nomoreheels

I believe u certainly misinterpreted wat I was conveying. I'm a Registered Nurse in the USA so I'm sure the tx are different. MTX is not the go to drug here , it's used if Plaquenil isn't working or u develop eye problems from the plaquenil or if UR RA is highly advanced when DX'd. By no means was I lumping everyone into my group of mtx pt who can not take mtx. I was on the lowest dose. And NO I would have never been "dx'd " with hypothyroidism anyway" I can't gain weight for the life of me and have been that way my entire life. If I miss a meal I lose 5 lbs. So if anything since birth thru starting mtx if I missed a meal I would lose 5 lbs. I'm 99 lbs and eat all I can even drink nutritional drinks I between to keep weight on. U made an assumption that I needed to be monitored monthly on MTX. I AM and always have been. It was last Novembers lab results which showed my hgb at 6.9 and my thyroid inactive. Another assumption u made was a DMARD WHICH I stated I was on plaquenil a DMARD. I WAS answering the questions posed to me re: menopause and the relation to mtx. And there is a correlation. You lectured me on my response which I did not notice MD behind your name. If this forum is not to tell the truth to someone posing a question and you may be experiencing the same issues as the person who posed the question then what is this forum about? Everyone reacts different to meds but you would be surprised how many ppl do not know mtx is a chemo drug and even in small dose can cause the same blood disorders , hair thinning or falling out, malaise etc as a cancer pt receiving a large amt. Here in the US if you see a good rheumatologist, he will not only check your CBC , liver enzymes , CMP , he will also check your thyroid. It is not protocol but a good rheumatologist will. Thank you for blasting me for answering the question of mtx and menopause correlation You sound intellectual but you also are very condescending and made assumptions

[nomoreheels in reply to JamieRN]

You've misunderstood the context of my reply. My reaction was predominantly due to your last sentence about MTX. The written word can be so easily misunderstood as no eye contact is made & intonations can't be heard. I merely wished to point out that MTX when our Rheumys prescribe it is a DMARD & the side effects for the majority of patients who their Rheumy wishes to start their treatment with are fewer & less severe on the whole than when it is used in much higher doses for chemo.

Although NRAS is a UK based site we very much welcome members from anywhere in the world but the majority of members when first diagnosed are prescribed MTX as their first DMARD. I have experience of the ACR guidelines being diagnosed & treated for the first 5 years in a country which uses the same guidelines including the use of HCQ as first DMARD treatment & so understand the treatment varies as does the health system. Here Rheumys are under the constraints of the NHS & often pushed to their limits, pressured to keep within strict budgets & the time they can afford to spend with each patient. It's not unusual for a Rheumy here to not have explained just how effective it is as a DMARD or simply be afforded the time to go through every detail so obviously search online for info & when they read it is also used as a chemo drug it can frighten people. That's why this site is a Godsend to many & runs so well as we all understand one another's problems & someone on here will have been there before & been reassured so doing the same for someone else. Then it's all undone when the opposite is stated! When someone is concerned I try to put myself in their position & answer how I would prefer it to be explained, in fact how my kindly Consultant explained to me. I read it as blunt, matter of fact & that you can expect to have the side effects people who are unfortunate to need chemo can have which isn't the case at all when MTX is used as a DMARD. Maybe that's your way but I would have thought having worked in a caring profession it could have been worded differently. We're all recommended to read patient info leaflets so there's little we don't know about but sometimes panic of everything we "could" experience overrides commonsense & that's where we can help with our knowledge of a med, good or bad but there are ways of saying if we've had a bad experience, less matter of fact ways to be told. I've been on the other end when I was concerned about taking a med that can cause a cancer that my dad died of but I received sensible advice & weighed up the chances of it causing the same cancer against the risk to me in the future not taking it & with the help of members on here I decided to take it & had no problems except the med was changed to a more effective one with the same possible side effect.

Obviously I don't know if you read the Community Guidelines or Users Terms & Conditions but if you revisit them may help you understand why we have to be careful when when a member contributes on the site because giving personal experience & medical knowledge are quite different I'm sure you agree. I'm aware you were a nurse & there are a few other retired nurses & clinicians who are members, the difference being it's not obvious that they were unless you know or it happens to come up in conversation.

l'm on the skinny side too being 130 of your US lbs! I'm monitored monthly on MTX so not so unusual & certainly preferred as any issues can be quickly dealt with as you know but I'm unaware I assumed anything you didn't state yourself. I questioned maybe your unfortunate thyroid issue could have occurred but the figures don't lie, it's possible & I did say you may have been diagnosed anyway, as any of us with autoimmune problems could.

I hope this clears things up & you understand why I responded as I did. There's little point chewing over it, that get us nowhere. We all have our views & worries & know they be can written down here safely & people in the same boat understand & appreciate that. That's great as long as it remains on a helpful & friendly basis. I care about people living with this disease, feel for those who are apprehensive & wish to allay those fears if, as in this instance, I know the drug when used in RD is a DMARD. I hope you read this reply as it's intended.

[JamieRN in reply to nomoreheels]

Don't think I read it as u meant it. U continue to berate me for using the word chemo. Her in the US we do not lie to our patients. We do take time to educate them and what a Rheumy is I'll never now. I'm assuming it's a RA MD , but we respect our Dr instead of giving them childish and condescending names the other point I'd like to address with u is here in the US we do not coddle our patients either. We must meet critical paths of care before a patient may be discharged or started on a new med. With that said, few if none of them " freak out " when they are told how mtx is a chemo drug used in small small amts as a DMARD or for RA. THEY leave the hospital knowing they don't have cancer but that mtx is a chemo drug used in tiny amounts to treat RA. JUST AS If u had just received a biopsy from the lab confirming a patients diagnosis, u just don't go assuming the patient understood everything the md said, u EDUCATE. ALSO WE are no longer able to use the word " terminal" EVER. WE are to say its bad but ther

But it's possibly curable. So between the US AND THE UK THERE seems to be a vast black hole in what our patients are told. The vast majority of this forum on RA are from ppl who are quite nauseous and on mtx and don't know y they are so nauseous??? U would agree the majority do not get proper education or they would already know why the are nauseous, MTX! I'm not here to fight with anyone. I give advice my way u give it UR way. I'm not sure y you are asking me to read the terms and conditions again?? Is this UR site? Because if it is , false info is given out. And if it's not your site are u a RN, ARNP OR A MD? I see none of that behind your name Hope you have a "jolly ole day"

[gaspajack in reply to JamieRN]

Hi in the UK most of the Doctors are just Docs or if they are a professor or a specialist they are sometimes known as Mr but the Rheumy usually means a Rheumatologist Nurse or Nurse specialist it's just shortened for ease on most Web sights and most "rheumy " nurses will use it themselves it's in no means derogatory to them or there profession. And I agree I tell my friends that methotrexate is used as a chemotherapy drug in large quantities and small quantities for arthritis I think all patients should be told what this drug is for and it's side affects.

[nomoreheels in reply to JamieRN]

I'm losing the will here! I'm not berating you, I would never do that, rather I questioned if it was helpful informing people "MTX is a chemo drug so you have to expect chemo type affects". I would also dispute your sweeping comment "few if none of them freak out", as I have replied to concerned members from the US so, as can happen here, not all Rheumys have taken the time to fully explain the meds they prescribe.

Whether anyone has letters after their name or not makes no odds. We are asked not to give medical advice & we respect that. If anyone does the administrators have the option to intervene if necessary. We help, support & advise, often from experience but never in a professional capacity. We don't know people's medical history other than what is divulged so it would be foolish & irresponsible to do so whether medically trained or not. This isn't a site for medical professionals & if we have anything to share, as long as it's truthful & reliable there's no need to say whether we haven't haven't. We support one another from a fellow suffers shoes & not a medical perspective. That's what's so great about it, we all know how it feels, the struggles & benefits as no Rheumy, nurse or GP can.

This is an extract copied from a page on the NRAS website entitled "Methotrexate in Rheumatoid Arthritis" which I trust will settle the matter.

"How does it work?

Methotrexate has numerous effects on processes in the body which could be relevant in RA and it is not possible to pin-point a single effect which explains its effectiveness. At the doses used in RA, i.e. generally between 7.5 and 20mg weekly, it does not have a significant anti-cancer or immunosuppressive effect, but it does modify the abnormal immune processes which cause RA.

It is clear that genetic factors influence both the response to MTX and the risk of side-effects. Although progress is being made in identifying these factors, there is at present no reliable way of predicting who will respond well, and who is at increased risk of side-effects."

If you care to read the rest of the page you'll find it here nras.org.uk/methotrexate-in...

I will not be further drawn into a mud slinging match of words so there's little point in replying to the rest, it's unnecessary. I don't wish to be misunderstood again & be forced to defend my words & your interpretation of them.

[lfu2]

I also had nauseous side effects possibly from methotrexate or some combination with it. It was always on that day. My GP prescribed 'metoclopramide'.... an anti nausea tablet, to take when required. It works wonders.

[Katheryn13]

I changed from pills to injection 3 weeks ago. And it's only really this week I've felt awful with sickness. Not actually being sick,mind. Which is good,but the feeling is worse IMO. sometimes i can burp but instead of a relief, it makes me feel worse. Ugh. I'm only on 15mg but idunno...gonna have to look for anti sickness meds of some kind. I can't keep feeling like this. Whole reason I switched was because I'd started not being ableto accept the pills properly with side effects making it hard to swallow. Weird I know. Lol. Also the nausea then puts me off eating which then makes it hard to tell whether my feeling is hunger or side effects related. weird thing is, when I first started the methotrexate pills months ago, I went a few months with no problem. Then they added sulphasalazine to the mix and I had crazy sickness. so they took me off it but since then I've had nothing but issues with just mtx. it's really getting me down. I'm still young in their opinion and my inflammation level is high so kinda need to keep taking it.