Starting methotrexate question: Me again.... apologies... - NRAS

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Starting methotrexate question

girli1969
girli1969
35 Replies

Me again.... apologies for so many questions!

I'm soon to start methotrexate, prescription being released once my chest X-ray and bloods have been checked, (after 13 years just on hydroxychloroquine). I'm currently trying to recover from quite a bad flare. I'm due to go abroad on holiday on 5th August for nearly two weeks, If you were me, would you start the methotrexate asap to start getting the benefits (I'm aware this can take a good few weeks) or would you postpone until after the holiday so as to avoid potential side effects whilst away. I work in a school so after Tuesday I'll be off work for 5 weeks and would so love to get myself back on an even keel! Feeling pretty bad with this flare at the moment. Thankd

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Ali_H

I personally would get started because it's going to take 6 to 12 weeks to show any benefits it has to offer you which already takes you well into the autumn term. To help minimise the side effects split your dose half in the morning and half at night - remember a split dose must be taken in the same day. If your taking naproxen do not take it on MTX day if you can help it the same for your gastro protector ( I.e. Lansoprazole) as these inhibit the kidneys ability to process the MTX so increase the risk of side effects (only slightly but as your on holiday I'd take the extra care). Remember to drink loads of water and also be aware that the MTX will make you more likely to get sunburnt so extra care needed there also.

Lastly enjoy your hols! 😎

Ali

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Eiram50
Eiram50
in reply to Ali_H

Hi

I too would start it as a matter of priority. I would say on the day you take it, drink lots and lots of water and think about having a lazy day, the day after ( lucky to be on holiday!)

Ali, in all the time I've taken Mtx, I've never been advised not to take any other prescribed meds ( naproxen, omeprazole)- only not to take the folic acid on same day as Mtx.

I think unless this has been stated by medical team, best to carry on with meds prescribed?

Marie

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Swanky
Swanky
in reply to Ali_H

Sorry but that is incorrect naproxen is fine to take with met just not the folic acid on a met day ! Take met soon as you can do gets to work and starts helping you out x also best advise I can give is don't split it up take 6 in morning plenty of water hope this helps x be lucky good luck Ali.

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meanoldtomcat
meanoldtomcat
in reply to Ali_H

Wow. I've learned so much bout methotrexate that I didn't no & haven't been told even tho I'm on my 6thwk of it. Ty for some very valuable information. If u have any more lil tidbits of info cud u please send them my way? I'm new here by 1wk but this site is so informative

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Simba1992

Depends on your situation. How aggressive the inflammation. Is your RA erosive? You say you've managed on hydro only for 13 years, has the situation changed? From what I have understood, starting with mtx is for the majority not very easy. If your condition does require fast action I would wait and enjoy my vacation and get as destressed as possible ( actually has a big effect on inflammation😊)

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girli1969
girli1969
in reply to Simba1992

Yes, the situation has changed quite dramatically. As far as I know my RA is not erosive, I did have an MRI of my hips and hand done in Feb. I've had a very stressful few months with an urgent investigation of suspected ovarian cancer, I'm now without my ovaries so dealing with a surgical menopause and have no doubt that that has all impacted on my RA. I have constant fatigue, and have had for a very long time, but now also considerable joint pain. I work full time during term time and am on my feet all day, got very distressed recently because I love my job but feel that I can't go on as I am doing

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Simba1992
Simba1992
in reply to girli1969

Since your RA is not erosive it really gives you an opportunity to look into other dysfunctions in your body and try to fix these first before starting hard meds. Your hormonal balance is probably off because of the removal of ovaries and in fact you have probably had an imbalance of estrogen-progesterone with estrogen dominance way before your operation. Estrogen dominance is an inflammatory state which is often found in cancer and other AI diseases. Estrogen also interferes with thyroid function very often leading to hypothyroidism that in turn interferes with glucose metabolism that in turn interferes with normal adrenalin function and leads to adrenal fatigue.

If I were you I would have a compleate thyroid panel done as well as check my eastrogen- progesterone balance. These dysfunctions can easily be corrected without toxic meds and it is also a fact that these dysfunctions give symptoms very similar to RA. Good luck. Hope to hear how it goes😊

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helixhelix

My rheumy was very firm with me that there's no such thing as a permanently non-erosive RA. When first diagnosed my first letter listed me as non-erosive sero-positive RA. Several years later when I flared badly (trying to taper off drugs) and suffered a small erosion I asked her why she had me down as non-erosive. Her answer was that was merely describing the state of my RA at that time, and I should never have considered that my RA would always be non-erosive.

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Simba1992

However, girlie1969 has been on hydroxy only, for 13 years without erosion, that does tell you something about her individual situation and her illness. As I have noticed following this forum it is very hard to make assumptions about someone elses illness judging from your own experience, so many factors at play.

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helixhelix

Absolutely - so was merely talking in general to remind that you can never be sure (of anything) with this pesky disease.

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Simba1992

So very true...

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Simba1992

Found some info on non- erosive RA. Seems to be very rare. This study talks about 2%.The non-erosive patients were also seronegative with low inflammation markers. Adding to this group the 2 % that spontaneously go into remission and perhaps others we yet need to find out about.This makes you wonder about the statistics on efficacy of meds and the real need for early aggressive medication for everyone. If more and more patients are treated early with immunosupressive meds, is there a group that in fact is over medicated, and that in fact gives false possitive results?

ncbi.nlm.nih.gov/pubmed/254...

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girli1969
girli1969
in reply to Simba1992

I'm not seronegative, and don't know whether my RA is erosive, I have some erosions, but this may be a bit of osteoarthritis thrown into the mix. I'm happy to medicate on the ad price of my consultant, that wasn't my question. I have tried to manage with minimal drugs and looking after my diet etc, but it's not enough for me now.

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Simba1992
Simba1992
in reply to girli1969

Sorry, my response was actually meant for HH who raised the point of non-erosive RA.😊

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girli1969
girli1969
in reply to Simba1992

Not at all, and sorry if my response came across a bit abrupt, that wasn't my intention.

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helixhelix

Sorry to hijack your post girli, but us RA nerds tend to get carried away by curiosity...

40 patients over 5 years? Wonder what outcome would be after longer or without the drugs?

I too worry about over-medication. But I guess that's the difference between operating at a societal level, when a few over-medicated patients is a a small price to pay for many, many fewer with damage. And at an individual level where over-medication is a real evil. Since moving to France I am horrified by the amount of drugs my GP wants to throw at me, and she looks so disappointed when I refuse!

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Simba1992

Yes, you are so right that's why I have a hard time really taking them seriously 😉

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Simba1992
Simba1992
in reply to Simba1992

Are you seronegative or positive? 13 years without erosions perhaps indication of seronegative? The fact is also that around 30% of RA is aggressive with early deformities. Evidently you are not in this group. If you are seronegative research has shown that dmards that help are harder to find. It has also been shown in research that an underlying thyroid dysfunction, even on a subclinical level makes it harder to find meds that work. Thyroid dysfunction in RA patients are very common and newest recommendations to doctors are to routinely check thyroid panal to obtain better results with meds. I wonder how many on this forum really have been checked thoroughly by their doctors on this important player in RA?

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girli1969
girli1969
in reply to Simba1992

I am positive for rheumatoid factor and negative for ccp (think that's right - long time ago!)

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Ali_H

I'm not advocating not taking meds as prescribed - my naproxen is as required and I make sure that it's not required on MTX day come hell or high water because of the interaction re kidney clearance. Just because a person hasn't been advised about something doesn't mean it's not a risk. I was born with a bilateral renal reflux which meant my kidneys took a hammering for the first 8years of my life and then the corrective surgery sorted it - and eventually ended the nonstop E. coli infections thankfully. Even with all the precautions I take my kidney bloods are up and down like a yoyo which was commented on when when I saw a new rheumy nurse last week but she was 'please' with my results when I explained- we had a good chat about alsorts re my RA and my treatment as I need the MTX to work for me and I need me to work to pay the mortgage off (3yrs left) so steadily I go. And I unequivocally advise anybody else starting out on this RA/DMARD journey to "Go steady!" Your body has taken a hammering over the past few years/months that has been hard enough to have you finally diagnosed and prescribed some bloody serious meds. So now the real work begins. Do all you can to support yourself physically and emotionally in these early days. Rest, pace yourself to avoid triggering more fatigue, drink loads of water, eat healthy but don't make your life misserible by denying yourself that treat of sharing an ice-cream with a loved one (unless ice-cream will have your RA screaming at you tomorrow then discover another treat and soon cos you need treats - not prescribed by any doctor but an essential of a good Wellbeing Plan! My treat when out for a meal is a proper cheese board with a side salad for my main and real coffee as these two are my favourite foods). Take the appropriate support when and where you can, go on holiday, laugh, enjoy those quiet reflective moments like watching the birds in the garden, have a stretch at a yoga class or a warm swim/walk in your local pool and then laugh some more - if you've laughed so much that you can't tell if your rib ache is due to RA or from the laughing then you've cracked it! Find someone professional to speak to about all your fears, grief etc as this can be a tremendous load off you (ask your GP and they can refer you or you may have a self referral service - ours is called 'Let's Talk' and even three years in I still speak to my counsellor once every 6 weeks or so to keep me emotionally supported beyond family and friends).

All the best

Ali

Well Eiram your response definitely triggered something in me - mmm I had better have another coffee in the garden and sit with this for a while as it appears to be something important to me. In the meantime know that this reply is not personal to you and somewhere along the line you have done me the service of nudging me onto another learning curve or into a deeper level of awareness - Thank you 😎

And Girlie do enjoy your holiday as it's one of the best things you can do right now. 😎😎

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Eiram50
Eiram50
in reply to Ali_H

Hi Ali

I don't take anything personally- it's all a learning curve.

Enjoy your coffee

Marie

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nomoreheels

I'd also start it as soon as possible given it takes a while to be effective. I would think you'd prefer to get established on it in the summer hols rather than whilst working. I agree with Marie, don't change the timing of any existing meds unless otherwise advised by your Rheumy. I've been co-prescribed various NSAIDs with each of my 4 DMARDs & always taken them on MTX day, they work better if taken on a regular basis & if they affect your kidneys or liver it'll show in your drug monitoring bloods.

Don't forget to take your folic acid. There's no guarantee you'll have side effects but if you do they're intended to ease any. Drink plenty of water too, especially important whilst abroad, you need to replenish what you lose whilst, erm, glowing! You can also help dismiss side effects by taking the tablets with meals. I started off on 15mg & took two tablets with breakfast, lunch & dinner.

Please ignore any advice suggesting you defer starting your new meds... you wouldn't have been prescribed them if they weren't needed & remember your Rheumy knows your history, is the one who's looked after you a long while & is recommending alternatives for good reason.

Something you've probably thought of but it doesn't harm reminding you if you haven't, don't forget to book your drug monitoring bloods, you may forget with going on your hols.

Enjoy your hols but do be aware MTX can make you sun sensitive so take plenty of natural fabric clothes just in case you need to cover up at the hottest time of the day. Have someone check you periodically too just to make sure you're not catching anywhere, we don't always notice ourselves til it's too late. HCQ can also cause sun sensitivity & it was also my first DMARD. I was living in a sunny country at the time & also when I started MTX & I was fine so if you've also not reacted previously odds on you may not with MTX either but still be aware just in case.

Most of all once you arrive, relax! Where are you off to? 😊

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helixhelix

I too would start now. Many people have no side effects at all, and you could well be one of them. Drink water, and then try to forget about it. To me the distraction of a holiday is probably perfect as you won't have time to focus on worrying about the meds.

It is always a good idea to check out your hormone and vitamin levels, and to see whether you can improve your lifestyle to help cope with the disease. But you can do that in parallel with using conventional medicine, and if all goes swimmingly then slowly reduce drugs in discussion with your medical team.

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Martinilady

I understand all the advice on here. I was eager to start mtx and had my 1st & 2nd injection at home. Went on hol to Crete my 3rd injection was due the day we arrived - I didnt even unpack I thought I'd get the 'deed' done & out of the way then enjoy the nxt week relaxing. I was ill the nxt 4 days in bed vomiting & diahorria. Slept on & off could only drink sips of water (I had the same reaction when I tried Mxt pills) I tbought the injection would be better as bypassing stomach.

I would wait if I were you my holiday was ruined & had to wait a whole year for another - luckily my family were with me - my daughter looked after me. I felt awful coz I was sharing a room with the other mother-in-law (I hogged the bathroom).

Enjoy your holiday - concerntrate o meds when you get home.😊

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girli1969

EEEk! Good point! Such a dilemma!

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JCSWAG

Oh I am so sorry to hear this. I have just recently experienced my first ever 'FLARE' whilst I was on holiday last week. It is so painful. I am at the stage where I have been given a script for Metho but I am in a quandary whether to take the wretched drug or not? I would not take this drug before your hols. Hope you have a wonderful, pain-free holiday. jcswag.

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girli1969
girli1969
in reply to JCSWAG

Thank you. Had phone call today to say my prescription/script is ready to collect, so it's up to me now... still unsure what I'm going to do

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Lizzy-m

Personally. I would have your holiday, enjoy every moment and start the methotrexate on your return. I am speaking purely on my own experience. The best advice will come from your own doctor. Have a wonderful holiday remembering to pace yourself x

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Suzy-P

I am taking mtx and lefumonide for my RA and was very anxious about taking either to begin with. I started on the mtx first and my rheumy was careful to explain that I needed to take a a lower dose for the first few weeks gradually building up to 25mgs per week - this was combined with folic acid 6 days a week and very regular blood tests (fortnightly). Therefore I am assuming your rheumy is doing something similar and all the time you are away you will be on a fairly low dose so should be easier for you to tolerate. Drugs are a very personal thing and we all react in different ways - I have not had any problems with mtx as far as nausea/stomach problems/tiredness but was unable to tolerate high doses due to liver function (probably due to combination with leflumonide). Hence I couldn't say to do one thing or the other - it also depends on your pain level - if you feel you can enjoy your holiday as you are then wait til you get back but bear in mind it does take quite a while for mtx to start making a difference. Have you been offered steroids as a short term solution to get you through the flare up so you can enjoy the holiday and then take mtx on your return? I have either had a steroid injection or oral steroids if i am going away or had something important I had to go to like a wedding etc. But then I am lucky with my consultant. Good luck and happy hols

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girli1969
girli1969
in reply to Suzy-P

hmmm, good point, I WAS offered steroid injection, but turned it down. my flare is improving, but i'm definitely not feeling good at the moment. Last day at school for me tomorrow, so I can then start focussing on myself and decide what to do.

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Entero
Entero
in reply to girli1969

The steroid injection is a good suggestion and offers a potentially good solution to your quandary. I would echo what others have said in going with the advice of your Dr but if s/he has offered you the injection then do you have a reason not to try it? My first one was like having an epidural in the midst of heavy labour!

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girli1969
girli1969
in reply to Entero

My only reason is that my body has been through considerable trauma in recent months and I'm trying to let hormones etc settle down and find out what my 'norm' now is.

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Entero
Entero
in reply to girli1969

I so sympathise with that position and only you can fully know your situation and what's right for you. Having previously had IV steroids I swore I'd never touch them again, but when in so much pain at my first consultation my Rheumatologist came at me with a needle I didn't even ask him what was in it! I didn't get any of the (emotional) side effects I had previously and felt hugely better within days. Only my experience of course, but I really hear you need a break. One final point which not everyone on here will agree with, but my personal philosophy when in doubt is to trust the advice of my consultant. That isn't abdication its acknowledgement of my limitations of knowing and trusting in someone who's made this field their life's work. Best of luck and enjoy your break x

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Elswick

It’s really difficult to say as I have not been to bad m on methotrexate yet it’s different with each individual I see nurse wed she wants to put me on injection methotrexate I go on holiday next day I don’t no if I should wait till I get back injection they say helps nausea ?????

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girli1969
girli1969
in reply to Elswick

Hi, you’ve replied to my post which is nearly a year old. I’d say go for it if changing from tablets to injection. I found tablets made me quite nauseous, but much less so on injection. The folic acid seems to be key for me, as well as staying well hydrated. I have some weeks where I feel really ropey day after injection, but mostly fine

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