Some people just don't "get it" : Apologies for this... - NRAS

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Some people just don't "get it"

Marionfromhappydays
Marionfromhappydays

Apologies for this post but along with the heat and my out of control joints I'm grumpy.

I heard back from the rheumatology nurses today about my new plan as I can't tolerate sulfasalazine, new plan of attack is methotrexate.

I know ideally no one would really want to take this drug but needs must and all, well in conversation I spoke to my mum about it she asked about side effects etc and she got really angry at me for wanting to take it. I am 46 so way past being told what to do 😁

She made me feel really crappy, no i don't want my hair to fall out (already have little bit of hair loss due to thyroid issue), no I don't want to get liver damage, no I don't want any of this but the need to be able to actually live my life without pain is greater.

I understand how she feels if any of my 2 daughters said to me they had to take this i would be sad but I wouldn't blame them which I felt my mum was doing to me.

I also had a chat to my 2 oldest friends last night and they just don't understand how much this affects my life; They think I can pop a pill and be ok. We were talking about getting older and one friend joked saying she would be needing a walking stick soon and i had a total sense of humour failure as I could probably do with one now.

I know i am in a dip right now, in between medications and desperate to find some relief, the sulfasalazine worked for a few days and now my pain and stiffness is returning and I am upset and angry about it.

I don't know if I need to see the consultant again before they can prescribe MTX, the leaflet said i would need a lung x-ray ?

Just taking 1 tablet a week instead of 1 per day has me worried about if I don't get on with it will I feel sick for the whole week?

Sorry I've just had a total brain fart here! I just had to get it out !

Thanks for listening x

78 Replies
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Methotrexate is my best friend. It gave me my life back and I would punch anyone who tried to take it away from me.

So don’t believe all you read! Paracetamol can kill you from liver damage too, and people take them like smarties.

My hair thinned slightly when I started but is fine now. I did feel slightly sick for the first couple of months but that’s fine now too. These days I just need an extra hour in bed the day after I take it.

Concentrate on the good things it can give you, not the bad things it might cause.

(And it{s more like 6 or 8 tablets, not one. Sorry,)

Thank you, you've talked me down from worrying 😁

6 to 8 tablets when i thought it was 1 🤣

They are tiny tablets. Not much bigger than pred. I took them from a spoon to speed the process

Oh good, was imagining ones like sulfasalazine 🤣

No. No more depth charges for you

Yeee haw

Sorry to hear that Sulfasalazine hasn't worked out for you but Methotrexate is a good drug (often called the gold standard) and the side effects aren't likely to last longer just because it's a weekly dose. You usually take folic acid to help with any side effects and that can be taken 6 days a week (not on Methotrexate day) if necessary. Hopefully you'll get on fine with it.

You'll find that you actually take several small tablets and they'll probably start you on a lower dose at the beginning. I did have a chest X-ray before starting it.

Sorry to hear that your mum and friends don't "get it" - if I had a fiver for every time people ask "isn't it better now it's warm" and "have you tried turmeric?" 😂

Personally I'm very happy to try any drugs my rheumy suggests - count my blessings that they're available 😉

Yes I need to switch my perspective to being glad there is something I can take to help. 🤞

Thank you x

This is my take on medication. Without I only exist with it I have a life no not perfect and days when life passes me by and others on here when they get the right medication they have relatively normal lives . This is my aim . Yes I got some hair thinning but it settled down with the help of marine collagen powder ( this worked for me) yes we need monitoring so that reduces any potential problems or stops them in their tracks. My father is like your mother. He said once your always having bloods or collecting medication. Explained why. His reply was just stop taking them if they are poison 🤬 my reply was then I can’t move or drive and won’t be able to visit oh I might die earlier what will you do then. He soon shut up. Not everyone has bad side effects on this medication . I didn’t have any issues for 3 1/2 years until I started my Biologic and suddenly my mtx would knock me out for days . Took a break restarted on a lower dose no side effects. Give it ago . If it doesn’t work you have nothing to loose but if it does work 😁two fingers to your mother 😂😂hope you don’t mind me saying.

I havent got my head around having to take methotrexate yet and I spoke to my mum way too early! We have very different views on life so I'm not surprised she said this i just don't want to hear it right now.

Thanks for your reply, I really appreciate everyone's help. Knee jerk reaction is to ask you guys 😁

Hope you get your medications tailored to your needs over the coming weeks x

I took methotrexate 12.5mg (5 tablets) for psoriasis. I never had any problems apart from the odd few days I felt very slightly sick and a bit tired but that could be because I have a physical job so tiredness could be that some weeks. I took folic and if you keep well hydrated you probably won't have any problems.

Thank you 👍

Hi Marion I started mtx about 18 weeks ago , I was dreading it to be honest but I can honestly say that it has only caused minor side effects (fingers crossed it stays this way) , I drink lots of water for couple days after taking it and I never touch the tablets with my hands , but like everyone says it’s better to take these meds than to let the disease get out of control , I just take the tablets on a Saturday night and then forget about them until the following week I guess it’s just trying to get the right mindset x

oh good you can take them at night 👍

Thanks so much for your reply, yes I just got to get my head in right mindset. You've helped alot x

Well I actually take them with my tea about 6pm and wash them down with lots water but of course it's up to the individual as to what ever suits you best x

chunkypie
chunkypie in reply to patsymay13

I was told to take them with at least one pint of water 🙂

👍

If you dont know already the x-ray is just to check you dont have TB👍

Ah OK, did not know that. They could probably ask me to do alot things and I would to get some help 🤣

Thanks x

Sorry to hear the reactions you have faced

Guess your mum is worried and of course friends don’t get it -we are all so used to getting health fixed immediately and the hardest thing for me to come to terms with this is for life

I was prescribed methotrexate and felt exhausted and nauseous when taking tablet - switched to injection and that all disappeared i am new to RA but methotrexate and a biologic have turned my life around.

I have also previously suffered from total alopecia and lost all my hair including eyebrows and eyelashes thankfully they grew back so I was terrified of methotrexate. Alopecia was devastating but loss of mobility is the same so I decided to give it a go and I am glad I did.

Unless you are faced with the kind of decisions regarding medications we all have to face others won’t understand and that is why this forum is so great

Good luck

Thats so uplifting to hear its made such a big difference to your life.

I am very touchy about my hair as its thinning anyway, it must have been hard when you lost all of yours, so glad its grown back. For something that's totally superficial hair is more than that !

Its so much to take in but no one I know to talk to.

Really appreciate your reply, thank you

GinnyE
GinnyE in reply to Piwacket

Hi. I have had alopecia for 40 years on head only. I thought the methotrexate might mean I’d loose the rest of my hair so they said take folic acid 6 times a week to help combat side effects. Incidentally, my dermatologist pointed out that methotrexate is being used as a treatment now for alopecia! Strangely enough I have grown a bit of fuzz recently. As the Americans would say, “Go figure”...

I take 20 mgs methotrexate by injection pen, I started on 10, still flaring, then 15 and now 20. Since January been ok. 🤞

Piwacket
Piwacket in reply to GinnyE

Alopecia is very horrible but my dermatologist told me it is an autoimmune disease and I had steroid injections - in my scalp and eyebrows - very painful but I am sure helped it grow back. I had no knowledge of RA then but could have been the steroids used in RA

I am so pleased you have some fuzz appearing - it started on my legs first and then it started to grow back everywhere. Just no colour - pure white with massive black streak at the back - I was a redhead so ‘go figure ‘🤣

Sadly some people don’t get it and some never do despite you trying but you do learn to not take any notice of what people tell you to do ie their friend was cured or their opinions. It’s your body, your life and your RA. I’m afraid I don’t talk to people about my meds really and I read about side effects once and then forget about it. Chances are you will get none like alot of people here. I’ll just add I’ve been on mtx for 20+ years and apart from a bit of nausea to start with ( not the whole week) I’ve been fine, no hair thinning. Good luck and let us know how you go. Here’s hoping mtx is life changing for you 🤗

Thanks Kitty

Really hope it is.

X

Totally understand what you're saying about people not getting how pants RA can be...I've given up trying to explain to some family and friends that it's an autoimmune condition....they just hear the word arthritis. But this site is sooo helpful and supportive, it's been a real blessing for me.

I was on Methotrexate for about 5 years and it was brill for my joints...yes, there are side effects but you will have monthly bloods to monitor you and regular chest xrays - you'll have a booklet that you keep, which gets updated by the gp surgery each time you have a blood test and you'll be given contact details for your rheumatology team, so you can get advice. But your rheumy nurse will explain all this in your next consult. I'm trying out biologic meds at the mo coz Methotrexate stopped helping me as much.

You vent as much as you want....we all completely understand :)

....you should see the side effects to me from all the shortbread I've been eating since lockdown and being furloughed!!!! Tee blooming hee!!

aww thanks so much.

Shortbread with a cup of tea is hard to say no to ! I need to loose the timber something terrible but at the moment I can't be parted from the crisp !

Thank you x

Sheila_G
Sheila_G in reply to Cookiecrumb

Hi. I am interested in what you say about chest trays with mxt. I have taken it for 18 years and never been offered a chest xray. x

Families, eh? 😂 I have a mother that tells other members of our family that I’m ‘looking for problems’. She seems to think that if I just stopped looking, then mine and my life-limited daughter’s multiple health problems will just somehow magically cease to actually exist or require treatment. To really paint the picture though, you then need to know that she actively and wilfully ignored her own angina and cardiac symptoms for 15 years prior to having a heart attack last year. She got off very lightly given I was told it was a miracle she hadn’t just collapsed and died. She’d been repeatedly told she needed to go to the doctor, even by a medic when she was taking part in some research and an ecg they did came back abnormal, and even now will ask my opinion on medical issues before completely ignoring the suggestion she needs to see a doctor. I sometimes wonder if her real issue is that I don’t just completely ignore medical problems until they nearly kill us the way she does 🤔 Anyway, she’s my mum and I love her, but that doesn’t mean I particularly like or agree with her, or don’t think she needs a serious reality check. I know you say you can understand how your mum feels, but feeling sad for your child is not the same as berating them for following the best medical advice currently available, or otherwise invalidating their experience of chronic, painful health problems. It’s something that is hard to get your head round properly, though, if you’ve not experienced a chronic or serious issue yourself. Friends and family in reasonably good health are part of the reason forums like this exist, I think!

As for mtx...as a man closer to 40 than 30, I was already losing my hair a bit. There’s no denying that has got considerably worse, but I suspect in my case it’s just accelerating what was going to happen in time. I had no real issues with side effects at my starting dose beyond some tiredness and feeling a bit achey for the first couple of days after dose day (15mg), and that all eased within a month. I did struggle quite badly with headaches and a general very hungover feeling when upped to 20mg, but again, that eventually passed within a few weeks. I’ve fairly recently gone up to 25mg and had no side effects at all. Occasionally I find I’m more tired the day after my dose, and have done since the start, but I’ll take that over not being able to cut my own food up or easily turn over in bed as was the situation last xmas. My liver has been fine so far, even with pre-existing non-alcoholic fatty liver disease, although the advice in my neck of the woods is no alcohol at all on mtx, so I don’t drink now which obviously avoids any unnecessary strain. I don’t particularly miss it.

It’s taking time to get relief, which is frustrating, but after 20 years of untreated pain and discomfort, I am finally getting there, and really that’s all that counts for most of us, I think. If that means taking ‘poison’? Well, so be it. I’d rather have a slightly shorter life filled with a decent degree of quality, joy and meaning than a longer one filled with what is - for most people - avoidable misery, pain and suffering 🤷‍♂️

I'm really glad MTX has helped you, I feel quite hopeful now. I always thought I was a glass half full person so its time I returned to form and thought of the positives.

Your mum sounds like a handful 😁

As you said love them but they don't always provide a comforting shoulder to cry on.

20 years, you must be so relieved to have found something to help, I've been in full blown out of control since May and could easily hot my head against the wall some days.

Really apprecaite your reply, thank you

Hi Marion

I would totally agree with the other replies, and KittyJ makes some good points. I've been on MTX now for 30 years. I only have 4 tablets a week because I have to take 4 other DMARD'S too so it's a very fine balance and being very prone to rheumatoid nodules, for me, the MTX encouraged more to grow. That's very uncommon though, and otherwise no problems in all that time! I have had hair loss in recent years, but it was absolutely nothing to do with the MTX. Turned out to be Discoid lupus instead! Years ago, you were encouraged to take the MTX one at a time throughout the day and folic acid wasn't given then. That used to make me very nauseous. Now though, it's all 4 tablets just before bed, and folic 5 days per week. Much, much better.

Ignore what others say. Unfortunately lots of people don't get it and think it's just a simple ache. I can't tell you the number of awkward conversations, inappropriate things said and sometimes rudeness I've experienced over the years. I've always found it difficult to deal with. I've never known what to say when a complete stranger comes upto me and says 'why are you walking funny - what's up with you then?' It's happened since I was a teenager, and still does sometimes and I still find it mortifying!! The other side of that though, is that many people are very nice and considerate and often exhibit subtle but much appreciated acts of kindness. It's all something else to get used to.

Friends and family can be very tricky. I don't know whether any of them would consider reading up on the disease a bit (something reliable of course). As for your mum, of course she is worried, but I would perhaps try and say to her that obviously all drugs have risks, generally MTX is considered very safe, and you will be closely monitored. Also, that no-one 'wants' to take any of these drugs - the condition doesn't leave us with much choice. After all, if the disease is not controlled then you risk joint damage and that is permanent. Believe me, speaking from experience, you want to avoid that if at all possible. Hope that might sink in with her a little!🤞

Good luck and don't let anyone make you doubt your decision. All we want is to be as well as possible.

Take care😊

you've all been so lovely, thank you for taking the time to reply.

Strangers can be so rude, fancy asking that.

I was thinking after covid whenever that mayne going to my local RA meet up group, would be great to meet others who understand .

Thank you x

Hi Marion

You are very welcome. If anything I said happened to be useful, then I'm a happy bunny!

I think if feel you would like to make face to face contact with other RA'ers, then joining a local group in future sounds like a very good plan. Go for it!

Take care😊

Hi Marionfromhappydays - I'm in exactly the same place as you. since I stopped the sulfasalzine I feel clear headed and slightly happier, I think it made me a bit morose and depressed. I'm also waiting for chest x ray and more bloods then will start methotrexate.

Also, since stopping sulfas. I've noticed a lot more nasty twinges in my wrists, fingers (all of them, only used to be 3) elbows, ankles and feet, and it's only been just over a week. i'm not in agony but am getting lots of intermittent sharp pains and slow creeping ache.

My white blood cells are low too which the rheuamtology nurse thinks is the RD, I suppose a sign it is not under control.

I found this yesterday

hopkinsarthritis.org/arthri....

It is the unvarnished truth.

It's put the fear of God into me and I want to stay as heart healthy as possible and if methotrexate can prevent me from becoming immobile then I'll take it.

Chin up - you're not alone xxx

Yeah we are the same x

I was only on it for 5 days but got so itchy and now various infections😒

Let's hope our MTX journey is better.

The sulfasalazine did help even the brief time I was on it amd today like you I've been hit with alot of painful joints and stiffness. I was like this after taking steroids though , I think i just forgot what the pain was like and bam comes back quick.

This disease sucks but glad we can take something to help xx

I too had trouble with sulfasalazine only took it for 5 days went into anaphylactic but my joints did feel better

BTW - the same website john Hopkins also has a video of how to inject methotrexate - should it come to that. x

Look up the spoons analogy to explain it to your friends. Good luck with the methotrexate.

Hi there I have been on mtx for 7 years, I lost quite a bit off hair for 3/4 months! I am still feeling sick when I take my mtx. But it's a wonder drug to me and I just put up with it. My doctor refuses to give me anti sickness drugs. Being on mtx I can go biking 3dsyd a week and going for long walks. Before I went on it I could not walk for longer than 500 yards.

It does take a good while to kick in, so be patient. But am sure you will be fine. Take care. X

Hi Marion. I know it is scary when starting new drugs but it isn't all bad. Of course there are drugs that wouldn't suit you but you don't know until you try them. I have been on methotrexate for 18 years now and I wouldn't want to be without it. I have never felt sick, my liver is perfectly fine, I live a very active life because of it. What's not to like? Yes, of course there are risks with anything. Have you read the leaflet inside a box of paracetamol? Your Rheumatologist is the best person to advise you and they wouldn't let you continue on it if it was affecting you negatively. I was like you and now I'm not. Give me methotrexate any day. It is quality of life that counts.

Thanks Sheila x

My mum keeps telling me she doesn't believe in taking tablets! Well neither do I unless I actually need them 🤯. I am now injecting methotrexate as I had bad tummy problems with the tablets. My symptoms are easing gradually. It is no quick fix. If people have nothing helpful to contribute do not bother to discuss with them 💖

My mum is exactly the same, she will not take a tablet ??!!

In thise situation its needs must, I can't have a functioning life.like this so I need to get over my fears .

Thanks for your reply x

Hi Marion, I'm also 46 and I was diagnosed 3 years ago. Sulfasalazine works for me along with hydroxychloriquine, whereas I didn't get on with methotrexate at all - which goes to show how unique and individual this disease can be for all of us.

Both my parents suffer from chronic illness so I'm fortunate they understand what it's like to live day to day. But the amount of other people who don't get it is mind boggling. I've had friends genuinely frustrated /confused as to why I'm not cured yet because it's "just arthritis", or annoyed that I sometimes can't do this or that because I'm too fatigued or in pain. I even had someone tell me to stop using the word 'disease' because it will scare people.

But I take my pills every single day, in spite of all the scary risks, because they allow me to live my life. It's not quite the life I expected, but I'm trying to make it the best life I can under the circumstances.

I hope the methotrexate works wonders for you. Ignore the ignorance (even if it's coming from family members). Embrace this group - it's made me feel like I'm not alone in this.

so the same, whilst my friends are kind they just don't understand; Just compounds the feeling of blah about my condition.

I've just got to get over this blip in medication reactions and live my life and not let arthritis take over as I feel it is doing now. I'm more than arthritis and i want to be Liz again !

Glad your medication helps you x

Thanks for your reply x

Good luck. If it gives you some hope, it took me a good couple of tries with different combinations of meds before I stopped having reactions (mostly asthma attacks) - and I've now been in clinical remission for almost a year. It's not completely pain free due to some existing joint damage, and my energy levels are not how they used to be, but I'm able to keep running my business from home with only the odd day off if I need to rest.

It does, thank you x

You poor thing . I know exactly how you feel . It took the Consultants nearly 4 years to decide that yes it was. RA and I started Methotrexate last November and Sulphalazine in March. Unfortunately the humidity seems to make mine worse. I now have to add in Tocilizumab next week as mine is not responding to treatment.

Do not be upset with your Mum. She is probably just frightened and her anxiety is coming out as anger. I have had no problems with liver disease although admittedly I no longer drink alcohol.

People who dont have the disease do not understand what it is like but then most of us wouldnt understand what it is like to have Cancer or Parkinsons . Thats why this chat group is so important. It might be worth finding out if there are any local groups near you who can offer support. The most important thing is your quality of life and to be pain minimised is going to help that. Before mine got worse again I was averaging about 4 days a week without pain and the hideous exhaustion. The Methotrexate might just be the best thing that has ever happened. In the early days it made me nauseous but that has worn off now and I found having a banana or cereal bar really helped with that. Good luck xx

Even your nearest and dearest don’t get it. They try to sympathise but unless you have RA you can’t understand fully. My husband tried to hold my hand yesterday and the sharp pain was dreadful!!

Your mum and friends just want you better that’s all.

I am going to try anything. As far as your organs are concerned they are stuffed anyway so give it a go. GOOD LUCK.

😀 hope my organs aren't too stuffed, but that actually made me laugh, definitely one way to look at it.

Thanks for your reply x

Hi I’m also on mtx and sulz. I started on mtx 4yrs ago I’m also on 4 pills because on other Dmards. Did start losing hair at start so nurse up my folic acid to six a week even did a post on here lol. When I started on mtx I wasn’t on this site. But your body is different to mine so you might not get same affects has I did. But my nurse said it’s a bit rough at start then it gets smooth and she was right.You get regular blood tests. You are monitored. Nurse is quick on phone if you have to give your body a break for a week. Also you can email your nurse if you got any questions. I was messaging mine daily at start. They are best ones to ask. You will be I am and so many others are. 🙂

I understand your grumpiness, I'm grumpy too.

I've had a few days of people, who think they know better trying to tell me what to do and repeatedly telling me 'how well I look'.

Do what is best for you, work with your rheumatologist and try your best to ignore all the people who think they know better than medical science.

yes I've had a few "but you look well" too. I know all well intentioned but I'm just fed up 😁

My sister keeps telling me I will get better after Christmas!hope Santa can do the same for you too 😉

😳

Hello Marion,

I was exactly your age when I developed RA after a holiday abroad. Now I am 71.

I had all your feelings and anxieties . Sta bilizing on a regime takes time and a lot of worry. Listen to the proffesionals at the same time fight your corner. If a drug is causing more harm than good just tell them. There is a lot of help out there.

I have tried many pills, portions, yoga, taichi, gym, physio you name it. I managed to work till 60 then retired. Now caring for grandchildren.

Now on MTX 15mg injection weekly.

Had a flare up recently through doing too much and just convinced the nurse to give me a course of prednisolone.

All the advise here is good. Start mtx on a small dose then increase slowly.

But always make up your own mind because not even the cleverest doctor on earth will know how you react to something. As for mum, well, I still tell my boys ( men in their 40's ) what they should do. They are holding responsible jobs and managing other people for heavens sake! But when they see mum they become little boys....

really appreciate your reply, it's all quite overwhelming at the beginning x

I think your overthinking things, MTX is a widely used drug yes some get side effects and it is toxic and used in Cancer treatments but in times several thousand times greater than that used in RA. My friend is a Pharmaceutical Oncologist he said many years ago when I was first diagnosed they should rename it ! The facts are that it might cause some hair loss it might make you queasy, etc: it also might just help your RA and relieve symptoms to the point of remission. It did make my hair fall out and I could not tolerate it but it is one drug that has to be given a go, as it were before moving on. If 10% of people get side effects then 90% don't.

As for your mum well really if you had said you had something much worse would she say don't take that life saving treatment? of course not, nor would you want to stop your children from being treated appropriately for whatever illness they might contract.

Hair loss happened to me before I s tarted Thyroxine then it grew back its the same for MTX. RA is a long journey not a sprint so its vital to understand that its not one size fits all and if in the UK the NHS has drug protocols and MTX is part of them. Do talk again to your RA doctor and their are anti nausea meds which can be used if needed although I never felt sick on MTX I did with Benepali and it did go after a couple of weeks as the body got used to the drug.

I'd urge you to read all the info about MTX you can find from reputable sources like the NRAS and perhaps even give a copy to your mum so she knows RA is not just about pain and swelling it can affect lungs, blood etc.

Hi Marion, only you know how you feel. People look at us and think there can’t be much wrong with us. Would be a hell of a lot easier if we had a leg in plaster, they would get it then!

You have to do what you need to to be able to live some sort of normal life. If Methotrexate helps you to do that then my advice is have it.

Very good luck I really hope it helps you.

Thank you x

Hi I’ve been on MTX for 20 years was on tablets first now on the mtx injection it has worked for me I was like u a bit dubious about starting it but was in so much pain so went for it an it worked only u can make the decision good luck on wot u decide an hope it works for you xx

Thank you 😘

I am in agreement with helixhelix about Methotrexate. A lifesaver. I've taken it since 1998. No liver damage ( painkillers are more culpable!) No hair loss either - just a slight thinning. Like helixhelix, I'm sometimes a bit weary, but this is due to a biologic just added to the mix. Just had my 85th birthday - and in no small way this is due to Methotrexate! I also believe it keeps Alzheimer's disease at bay. What's not to like? I would rather ditch the biologic than Methotrexate.

thank you, really puts my mind at ease x

I would rather take it than be without I’ll take my chance with side effects or be in pain I know everyone is different but it works for me I’ve been on Methotrexate for a long time, started on 10 tabs and I’m now on injections that I much prefer I hope you get on ok xx

thank you

Hi, Marion! I was on MTX for a year and a half. It did help. I took folic acid and biotin that really helped with the hair loss. I still take the biotin.

will look into biotin, thank you x

I couldn't tolerate it as it was making my liver sick so after two tries they stopped which made me very sad as the rheumatoid was making me feel disabled. I do know someone though who got it and felt as though a miracle had happened. Listen to your doctors but talk to your nurse specialist about how to deal with your mum. Being honest here I didn't want to take it but I would have done anything at the time I was so miserable. Every thing has side effects even paracetamol which people pop like smarties sometimes, the thing is you need it and there is more there if it doesn't work for you but they have side effects too so a trial is all it will take for you to know if it will work. Ask your mother if she wants you to be disabled? In nursing I worked in rheumatology many years ago and I remember how miserable all the patients were with pain and how restricted their lives were. Stand up for yourself it's your body and your life and if they had the pain they would also be doing whatever was required. I see rheumatology patients at the clinics and can see the difference drugs are making. Don't look at side effects instead focus on how you feel, being body aware is a great thing for us. Hope things get better soon x

I had an xray too. Methotrexate worked really well for me. The downside as with lots of RA drug is if you get so much as a cold you have to stop taking it until you're fully recovered. I started having frequent chest infections, some quite bad. So they did another xray and found that my lungs had deteriated. They came to the decision that methotrexate was to blame and stopped it. The deterioration was so little but they said it could get worse if i carried on with it. This only affects a small number of people. I wish i could have carried on with it as i felt almost 'normal' while taking it. Don't worry. If the docs think it's not for you they'll stop it. It hasn't caused any lasting effect on me. But remember to tell them exactly how you are feeling. Hope it goes well for you x

Marion. My husband has seen my reaction to your note and insisted I respond. At the time of writing this you’ve had 70 replies from experienced sufferers. It says a lot. I’ve just about composed myself. I cried thinking about your situation. Actually broke my heart reading your note. I bitterly resent others uneducated opinions. How very dare they cast uneducated judgement. Those that love us don’t get it. They can’t. How can they?. Do they bother to read up about RA? Well maybe some do. We all have friends and family that care and they really do but you have a life to live and if you cope well with mxt, where’s the problem. None of us want to be popping pills every day. It may very well work for you. You will know if it doesn’t.

Your team at the hospital know what they’re doing and you need to listen to your guts at the same time. That’s very important.

I’d say give it a go. I take it as well as a biologic. My aim is to get off mxt because it encourages nodules. I get them in my balls (feet). 🤣😂🤣😂. Apart from that I cope well with them.

We all have our struggles. Some of us have terrible issues to deal with in addition to RA.

Listen to your team. We’re not really allowed to give medical advice. Your team are very experienced.

Everyone that has responded has been through different drugs/plans. This is your next stage. I wish you well. You’re not alone. You have us quirky lot 🤣😂🥴😍.

Emerald you are so kind, my mum and I have always had a bumpy road, i love her alot but we don't see eye to eye on alot of things; Her reaction yesterday was not what I wanted to hear when I had just found out MTX was my next drug.

This forum has been such a help to me its unbelievable how informative and supportive you all are.

Thank you for taking the time to reply it means alot to me and helps me get my mindset in the right place to continue treatment and get back on track.

Thanks for your compassion xx

I'm a bit late on this thread, Marionfromhappydays, but your mother's reaction interested me. When I was 32, in 1967, and just diagnosed, my mother's reaction was to burst into tears. Bearing in mind that this was 1967, and little or no effective treatment was available, my future looked dismal - as the rheumatologist admitted.

But my Mum had good to reason to despair. Her mother was diagnosed in 1930 - spent 9 years in excruciating pain, lost 5 stone in weight and died in 1939 after a massive haemorrhage of the lungs, at the age of 59. She died when I was 4 years old, so I only have a very fuzzy memory of her. How she would have welcomed Methotrexate, or anything else for that matter! But her doctor could only suggest a glass of Guinness before bed.

Fortunately, I was not to suffer like my Granny - although I had to wait until the 1980s for my first DMARD.

Sadly, this disease is not widely understood even now, but the NRAS have been prominent in bringing to the notice of the public, with an educational campaign, both RA and JIA, and explaining the differences between them and OA. And also emphasising the help now available.

Good Luck! You are on the right track.

Thanks Bienassis, what happened to your grandmother is tragic, great news you didn't have the same experience even if you did have to wait until the 1980s.

It's all early days and new to me and I still haven't accepted things yet! I am thinking about all the side effects when I should be thinking about the benefits.

Thanks so much for your reply x liz

Perfectly normal to think about the side-effects. I remember being staggered by the leaflet that came with the pills when I first started on Methotrexate. I tried not to dwell on it and the consultant said the drug company was obliged to include everything reported - but if he (the consultant) had RA he would not hesitate to take it. These drugs go through many different clinical testing trials before being considered for patients. A lot of the side effects will not apply to RA - as the RA dose is small compared to the doses given to cancer patients (for breast cancer, for example).

Most side-effects are minor; I know hair loss worries a lot of people. My hair did thin slightly, but soon recovered. You are probably taking folic acid which should help with that.

Take heart that this drug is considered the one all others are pitched against and it has been found to be a winner.

Your consultant should be able to reassure you and you will be closely monitored.

Take heart!

Thank you x

My nan had RA and she was so stoic, I disappoint myself with how anxious I am about trying new medications. Got to take the leap and try x

Hope you are feeling well today, this weather makes people joints unpredictable xx

Liz

Like you I am about to start mtx. I've had it in the past. Can't wait as I know it will help. Didn't have many problems last time so hope it will be the same this time. Let's hope we both do well

Good luck

Oh thats great, good luck and thank you x

Bet it will be lovely to geel normalish again !

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