All MTX patients should read this. I nearly died last night

Hmmm maybe I ought to get myself a dog! Ever hopeful eh! Yes I am more often than not told to 'go away and see what happens'. Usually when I go back the symptoms have gone past the stage where they could have been 'nipped in the bud'. I do question everything which for some reason has caused my doctor to have a dismissive attitude with me. In fact for my urine results she wouldn't even speak with me and the 6 or so questions I had got relayed through the phone through reception to her to me. Thank you for taking the time to reply. I feel very scared and alone and it is a comfort to hear from other people 😊

Hi Mrs Mop 😊 I was going to send you a message Friday letting you know I was thinking of you on MTX day but as you now know I was in hospital. The fact that I do question everything has changed my doctors attitude towards me as if I am questioning her medical qualifications. I have noticed the change and in fact she often sends her messages through reception rather than speak with me. I am going to do something about this when I feel better. This whole episode took over a year to even get me to a specialist as I was made to feel I was 'imagining' things and the delay has caused extra damage so I already wasn't happy. The good news is the hospital have upped my folic acid and I have cake!! 😂 every cloud hey. Hope you are doing well

I don't know where my W went from 'wary'!!

Lisa, your GP sounds like one of the Dermatologists, there are 3 Consultants [sorry if I'm repeating myself!]  2 women and a man.  The man is the most recently appointed but infinitely the best.  The one woman is the Clinical Lead and the other is a GP who's been 'promoted' to Consultant, probably because they find it difficult to appoint doctors here.  I kept seeing this ex GP and she is not very knowledgeable and was immediately on the defensive when I said I had seen a Derm privately and she kept telling me how wonderful she was and how everyone else thinks she is wonderful.

When I first started on MTX, it was ok and I took the Folic acid the following day, then I started to pass out after taking the MTX.  My Dermatologist [excellent male one] asked me to take the MTX and Folic acid together.  It worked and I have been taking it like that ever since, much to the chagrin of the clinic nurse and one Pharmacist.  But, I reckon my Consultant has a lot of experience under his belt and also does a lot of research, so I do what he tells me to do.

 

I want your consultant! 😊😊 as soon as I get better from this relapse I am going to start demanding some things firstly my medical records and then an urgent appt with my specialist and when he tells me he can't fit me in I will tell him he had better if he doesn't want to be added to my complaint! I no longer am tip toeing around my doctor. After all she tried to kill me!! 😂 I have nothing to lose by fighting this x

Do you contact your Consultant through his secretary?  That's the way I currently do it, though I am going to see whether I can email him.  I occasionally nedd to speak to him but don't necessarily need to see him every time.

 

Yes I speak with the secretary. I have tried to get his e mail but it is a closely guarded secret! I don't want to see him all the time. I'm happy to speak with him on the phone but 8 days for a call back is unacceptable. I want to go see him to sit down and talk face to face about the problems I have been having and about what happened this weekend. I want more available access to somebody who knows what they are doing 😊😊 x

I completely agree with you.  

I have no idea but I will be finding out. Thank you for letting me know this information 😊

When I collect my drugs from my community pharmacy, they just hand them over, they never point out the dosage instructions, whereas the hospital pharmacy always check everything

Lucy, it could be that they use a program, that is supposed to pick up on these things, which is why they miss them.

 

I err on the side of caution and ask my pharmacist every time if there's anything they think is untoward.

My pharmacist fulfilled the prescription knowing I'm on the MTX but I shall be double checking everything myself now 😊

Hi, this whole thing is horrific and I really feel for you. As a pharmacist myself, I came on here to find more info on what side effects people get most often on MTX and stumbled across your drug interaction with trimethoprim.  

Firstly, your GP's prescribing program should absolutely prevent him from being able to issue this drug combination, so I'm amazed! Never mind the fact it's a WELL KNOWN interaction.

then, your pharmacist should be acting as a safety net in case of prescribing errors, so what were they doing!? This of course only works if you always use the same pharmacy, which I DO recommend, esp if you take MTX.

i always confirm dosage instructions for new drugs or when doses change for existing drugs, and this has sometimes revealed things that happen to be important, which I discovered on talking to the patient. I wish this happened more often and as matter of routine for all. Although some patients I speak to start to get annoyed if I ask too many questions as it looks like interfering! You can't win! 

Ive seen on the 'methotrexate card/book' they give you to carry your test results in, there is a warning about the trimethoprim interaction printed on there. I spose the biggest piece of advice is...ask the pharmacist if they have done a proper check on your medicines each time something is new.

Another point is some GP surgeries dispense for village patients and there is no pharmacist at these dispensaries, so If this applies to you, be extra careful, no-one is double checking anything on your prescription!! 

 

Hi again!

I forgot to mention the weekly dose thing. I'm sure you're aware there have been problems /near misses /patient harm /death when patients have been admitted to hospital for a length of time, and the nurses were giving DAILY methotrexate tablets as they weren't aware it was a weekly dose! Unbelievable. Always carry your alert card and take it into hospital! 

Best of luck 

Bless you Sarah. I actually called a meeting at my doctors as so many errors have been made. They will not take responsibility for this error as it is not 'in their interaction book'. They have a pharmacy on site and the pharmacist is usually very good so I questioned him too and he said the same thing. He did however start measures to make sure this doesn't happen again. I am having the most awful problems with doctors VS specialist. My CPR keeps going off the chart and when noted on the bloods somebody is supposed to tell me whether it is safe to take it. The doctors will not take responsibility for that and the specialist, almost impossible to get hold of says the doctors should be making that decision. He has written to them telling them that... Doesn't fill me with much confidence. I love that as a pharmacist you are researching this. Wish there were more like you. Just checked my booklet and it doesn't mention trimethoprim at all either. One thing I will tell you that the medical books don't is that people on MTX are scared. It is a heavy duty drug with vile side effects and you are also struggling with the illness itself. In my case I was given this drug with a follow up appt in 4 months. The doctors don't have anybody qualified on this drug and the specialists registrar takes 8 days to return a phone call. Thank you for taking the time to post this 😊

Thank you for that advice. 😊

I have just had a look at my book and it does mention it and Septrin.  I have only ever had my bloods written up in it once, last May!

I always carry a list of the drugs I am taking and also, when I stopped them, in the case of Pred.

 

Sorry for delayed reply! Thanks for posting this, it's really interesting and so important. I expect patients get quite a patchy service and are told different things to fob them off. I don't know what your surgery mean when they say they don't have this interaction written in their book....I've just checked and it is definitely in the BNF (you know the bible all doctors and pharmacists have), although mine is an old copy as I'm on maternity leave (!)  but can't believe any newer copies are missing it! so I don't understand that. It doesn't matter anyway, it's such a well known problem, there's no excuse. I did find something via Google which was a safety alert sent to Suffolk practices, will try and post the link if it lets me. It said on there that some info sources don't consider the interaction that serious, which I am so surprised at.  I wish I had an answer for you about who to contact or how to get quicker responses about blood results. It must be so hard and frustrating. You expect the 

GP to be the person to advise you, if you can't get through to the hospital, don't you?! 

Hope the pregnancy goes well, Sarah, when is your baby due, or has it arrived?

 

Thanks mrsmop, baby girl is now six months old, can't believe how fast time has gone!

Congratulations!!

Oooh a baby! Happy news. When are you due or are you now a mum? I found the Suffolk letter on google and took a copy of it to the meeting to be told doctors don't use google. I have kept all my notes from this for when I feel stronger as I am not happy about it at all. I can't deal with 'formal complaints' etc at the moment but at least the doctors know I am smarter than I look! Also that I am keeping an eye out...... 😊😊☀️

Just read your baby girl is 6 months. Congratulations 😊😊☀️

Thank you! 

Wow, I can't believe that they said that to you. It doesn't require them to use google to actually get that information, that's just a local example of a safety alert that has been sent out due to fatalities - it's supposed to be a learning opportunity for everyone involved, so it doesn't happen again! I now want to go and find a more up to date BNF to see if it's not in there any more - I'm finding I'm missing my work a bit now, hence coming on here to see what tickles my fancy! It's just that I don't have access to all resources I used to, whilst at home. Hey ho.

I also came on here because a member of my husband's family has been put on MTX recently and like I said, I wanted to hear the 'real stories' on side effects and what to expect, rather than what the books tell us, so I can help him a bit more. 

can I just ask, do you all have just the 2.5mg tablets? You used to get 10mg tabs but it's now not considered good practice to have both available as there were so many dispensing errors being made, with obviously terrible consequences if you got the 10mg in error.

 

They only appear to dispense the 2.5mg tabs but, interestingly, my Consultant always writes 'please dispense the 2.5mg tabs' and he always tries to prescribe 2months supply, in case anything goes wrong with my appts. and most of the Pharmacists ignore his request and dispense 4 weeks.  One Pharmacist telephones him to check his prescription.

It is all academic at the moment because I have stopped taking it because of sever pain in my hips and thighs but, that's another story!

 

Always prescribed to me in 2.5mg Sarah even though I take 10mg which I heard 3rd hand today they want to increase. I don't know whether to laugh or cry.... So I'm laughing hysterically! Could you recommend any good antipsychotics before they cart me off? 😂😂😂 All jokes aside I feel rough. Virus rough. Bloods don't get done until Monday so I have no clue as to whether to take my MTX or not and nowhere to go to find out. The trouble is as well because it knocks your immune system for six getting I'll is all part of it which makes the side effects worse. The good news is I've lost a stone! The bad news is I didn't need to. What fun when I feel better putting that back on though! 😂😂☀️ X