Or so my RA nurse said when she talked me through the Methotrexate injection.......However, I was already mega stressed as I ended up being 45 min late for my appointment. There is clearly not enough available parking at the Western General Hospital in Edinburgh. Anyway back on track, I now have to carry a card with me to show that I take methotrexate (metoject pen) because obviously the drug suppresses my immune system. Anyway after lots of chatting and getting my medication, folic acid and sharp boxes (with purple lids) I was sent on my way. I forgot to ask if it would be easier to wear a medical alert bracelet. So my random question for today is do any of you lovely people wear a medical alert bracelet?
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Damamy
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No I don't, although I do have a list of meds on the lock screen of my phone. MTX only compromises your immune system a bit, rather than majorly suppressing it, so I don't feel particularly concerned. The bigger worry to me is making sure doctors prescribing antibiotics have checked that they are not the ones that I shouldn't have.
No, neither do I carry a card. My meds list is within my drugs monitoring book which is in my handbag at all times, a repeat script list too should I be knocked down. They're also on my iPhone (though I have thought that's pointless because whoever finds me in a crumpled mess won't know my password). I see no point in labelling ourselves any more than we are already with Blue Badges actually. This has made me quite grumpy, as long as your meds are listed somewhere I see no reason to wear a tacky metal bracelet, which I'll react to anyway. It's different if you're diabetic, have heart problems which require specific med alert, have food allergies or other reactions which require an epipen, others which I've not remembered at this mo. I'm not immune suppressed enough to worry about it in other words! I do inject MTX too, have been for 8 years, but this is the first I've heard about needing to carry a ruddy card.
Maybe if you're newly diagnosed it's such a big thing & it concerns you but I've been diagnosed with RD over 10 years & it's not life threatening... life altering to a degree but not threatening. 😜
Yeah I get all that. I don’t normally carry a bag or purse as I have problems with my shoulders. However, I do keep a repeat prescription tucked in my phone case and the info on my phone. I just have a sister who is a nurse who thinks she knows everything and I should have a bracelet. She pretty much been nagging me since Wednesday and has managed to convince my parents that I need one. I’m fed up having to explain myself over and over again. In fairness to them I’ve had one health issue after another for the past 18months and doesn’t look like it’s ending anytime soon x
If it makes your family happy & you're ok with it then wear a bracelet, it's only my choice not to, I don't want to influence you. I'm just a bit fed up.
I am really not bothered either way, I was just curious what other people did. I’ve told them all to back off and let me deal with it in my own way. They won’t listen but I’ve said my piece. I’m so sorry you are fed up. Xx
They're probably concerned, if so then that's nice, better than the other option which we see all too often, that family don't understand. Maybe once they've got used to your diagnosis they'll let you alone & allow you to deal with it your way.
You do what makes you feel comfortable. lovely thst your family care about you.
I often wander about in nature with no phone, no nothing! You reminded me I should probably at least take a phone. I will stick alert card in sleeve. Actually, friends are often telling me off for going walkabout without it. Makes sense to carry list of drugs and a phone. Mind you, I'm often in the middle of nowhere!
I didn't even think of any of this - how silly ! Like Nettie, I am also a wanderer in nature wherever! The road less travelled and all that and have often had to depend on the dogs to get me back to the start 😁
Sorry to hear you're fed up too. I think you're right, the weather can have an affect. You'll be back up once we see the sun again as will I. It's when it keeps me out of the garden it impacts. Oo oo, my h bought me a pressie, he arranged for it to be delivered so it'd be here for me when we came home from hospital (when I had the scopes), I'll post about it. x
For me the weather has a tremendous effect. Damp =pain! I must say tho , I am grateful for the past week of cool downs because here it has been unbearably HOT in the 100’s (45+C) . But a lot of the fog is also smoke from all the wildfires u north and that’s another thing altogether!
Me too, damp & humidity. The weather is unusual at the mo, we've e had a nice summer, not the temps you've had of course but then it is the UK! Total turnaround now though, rain & definitely a lot cooler. It's been very hot in Spain too, we were lucky & were back home by the time it happened but temps like you've been experiencing. Trouble is it makes everywhere tinder dry & with that comes the risk of wildfires. Keep safe.
Tell your family if they would like to give you a jewel encrusted platinum MedicAlert bracelet as a gift, you would love to wear it.,but if they mean one of those tacky chunky chain monstrosities politely
I don't know. Family who are over interested or couldn't care less? Tricky one. They care so I'd go along with it until you start to 'forget' to wear it.
I took a photo of my list and used it as the screen lock image on my phone, so anyone can see it. I often don't have anything but my phone on me if I'm out walking....and no longer even have a handbag!
Interestingly the information pack I got with my first lot of Enbrel went on about carrying a card. So I asked my GP, then my rheumy, and then the pharmacy and all of them had never been asked before! I must be the first person in this area who has actually read all the 4 information books... (and the pharmacy is still trying to get one for me with no success as yet)
(Very high dose steroids is another one where you should carry a card).
Sorry to intrude but I see u have been on MTX for 8 years. I'm about to start. Have the injections in my cupboaRd but haven't taken them yet as terrified of the side effects particularly on my stomach as I've suffered a perforated stomach ulcer and only have half a stomach and lots of scar tissue. Any advice u can give will be greatly appreciated.
No probs, happy to share my experience. Sorry to hear you've had such problems, it's understandable you're hesitant.
When MTX is delivered subcut it goes directly into the bloodstream so the tum is spared the med. Many people who have similar issues to you have been changed to injections. I don't have tum problems, except for a little nausea initially & when I've had a dose increase but it soon goes. I stayed on tablets for a year but I needed an increase in dose. Previously my liver responded negatively but with injecting less of the dose is lost, unlike tablets where the delivery is going through the digestive system & so the dose lessens, often you can reduce the dose slightly to have the same effect as tablets.
How about setting a day to inject where you're not doing much the following day? Your Rheumy will be looking out for the results of your drug monitoring blood tests so big breath in & go for it. 😉
Thank u my heels and ankles are so sore at moment I'm going to when my husband is here just in case. I'm terrified of taking the shot then experiencing bad stomach pain. Nausea I can deal with.
Well, you're injecting not swallowing the MTX so other than thinking about it possibly causing a nervous stomach it shouldn't have any affect. Try to relax, pinch an inch & inject, it'll be over before you know it. Fingers crossed it works for you, the sooner you do it the sooner you should notice some improvements.
Maybe you'd benefit from seeing a Podietrist as you have foot problems. Ask your Rheumy if he thinks a referral is necessary.
The stomach pain and nausea I'm worried about doesn't necessarily come from swallowing the drug but from the drug in your system. I'm aware I'm not swallowing it but am still terrified of tummy spasms etc.
I think you need to talk to a professional, your Rheumy or nurse, your circumstances (prior perforated ulcer) are really causing a stumbling block. It's another week gone since you asked & you've not managed it, I understand your concerns but not sure we here can give you the wherewithal to do the first one to see. All I can give is my (& others) experience that injecting bypasses the tum & other than a nervous tum it shouldn't affect it. They will give you proper medical advice so please do speak to either of them, the longer you delay the more of an issue it will become.
If I could be beside you doing your first one I would but maybe if your nurse could be it would help. Actually, when I first changed over to injections I was shown how to do it with a dummy syringe (this was before the pens were available) then did my first one in front of the nurse. Again, when I returned to the UK I'd to go to my local hospital to collect my first month's supply & inject in front of the biologics nurse, to prove I knew how to do it correctly even though I'd been injecting for 4 years. Maybe ask your Rheumy nurse if you should too, it may help having someone who knows being there beside you. x
Thanks for your response. It's not doing the injection I'm scared of its the fear of all the side effects. Also as I don't have anything showing in my blood I'm not entirely convinced I need such a harsh drug. I don't want to take a drug on a suspected diagnosis like mine which is Psa?
I realise that, as mentioned my first paragraph. I just thought maybe if there was someone with you it would help, my thought process being that having someone with you supporting you to take the leap really.
There must be enough proof other than those revealed blood tests for your Rheumy to prescribe MTX, do you not have any other symptoms you could relate to a diagnosis of PsA? There are those who also don't have inflammation markers in their blood who actually wish they did in order to start treatment. But if you feel that you'd prefer to start on something other than MTX you must talk to your Rheumy about it. Part of the acceptance can be being assured that the meds are necessary.
I've seen a podiatrist and have recently had a neuroma surgically removed so at the moment it's not just my ankles that are sore but the ball of right foot. However that will get better but not sure if this pain and inflammation in ankles will.
Ok, so it sounds similar to me when I was diagnosed, only my feet & ankles were involved, erosions were found so I started treatment on hydroxychloroquine. I moved on to MTX when that started failing, I was on 400mg daily so the dose couldn't be be increased so MTX was introduced.
I also have pain in the ball of my foot, both feet actually, metatarsalgia & other RD-caused issues too. The case being the fatty tissue is lost (fat pad atrophy) & thick skin forms, this causes corns which need to removed regularly by my Podiatrist, it's this loss of natural 'cushioning' which causes pressure on this area resulting in the corns. Unfortunately meds can't help this once it's got to that stage even though the initial cause is inflammation. Supportive footwear in my case is essential as my arches have virtually collapsed. As are my custom made insoles, they help towards comfort but still affect how far I can walk.
I can only think your Rheumy has recommended MTX injections because tablets are more likely to cause tum issues, but only he can confirm this so do ask.
You really need to speak to your nurse/consultant. ..I assume they know your stomach history ?
Whilst the sc injections help with the stomach/gut problems it doesn't rule it out. I'm much better on injections but still get mucositus, diarrhoea and stomach pain.
Exactly what I'm scared off. Still not taken that first one due to a recent stint in hospital with a blocked bowel. Never ends. Seeing rheumy on 27th so will try and do it then.
I ve got alert card stuck in wallet because they gave them out when diagnosed, never needed it but reminds me to tell chemist, dentist etc if on other meds x
I have an alert card that came with the bio drug. Jo idea where it is though!
I once asked my nurse about an alert card for mtx and she said it wasn't necessary. I do carry my mtx booklet in my handbag with me though. I have got ICE numbers in my phone (Incase of emergency), I've got 1,2 and 3.
I've got an alert card for enbrel and I have put on there my mtx dosage, my hospital number and contact numbers for hospital. xx
NO.......just have your injection & forget it until next week.I took Mtx for 7 years & I certainly didn't want to advertise it...this time next moth you will be an old hand........keep the MedicAlert card in your purse....
Jut make sure you take the FA, & drink plenty of water....& you will wonder what all the fuss was about.
Remote flowers and hug . 🌹🌷🌻🌼🌹🌷❤🌻🌼. Makes no flippin difference I know. Just wanted a distraction for you guys too. My distraction is being away. Hugsx
Yes with oh, ( just so happends my 2 older brothers also, whom I dont see a lot of) at a Harley 'thing' in Aviemore. We are harley bikers. I love riding, not doing it at the mo, body doesnt like it. My lovely oh has bought a trailer so we tow the bike so I can be part of the weekends we go to and then he can ride. This one is the biggest we go to. I feel sorry for the locals noise wise but it does generate a lot of money. Thing about Harley riders is they are generally older so ...hopefully... more thoughtfull than a lot of bikers.
I have a feeling im going to get the post summer blues as this is the first proper summer we have had in 3 years. Doesnt matter as I will have the memories. I give you full permission to remind me of that if I come on here struggling.
Just about everyone says that. Im not really these days more of a tagalong. I do like to pilion but body doesnt. Im ready for home. This time tomorrow we will be on our way.
Pleased you feeling a bit better. Hope the upward trend continues for you and everone who is below parr. 🙂
Yes, I wear the necklace and I have a list of my medicines and health issues right next to my drivers license. I have many more problems, such as insulin dependant diabetes because of the prednisone. I take Leflunomide and Humira though. Recently I had to go to the emergency room, and my husband was able to just give them the medic alert info sheet, ID# and telephone number. Afterward when things settled down, the ambulance medics, every doctor and nurse, including the triage, praised having the form and bracelet. They said it was the easiest admittance ever having all they needed to know right there immediately. They also said they wished more patients with serious health issues did this.
Hospital gave me an Arthritis Research UK “Biological therapy card” which basically gives consultants name, hospital and phone no and is for showing to health professionals advising them to take any infections seriously. The only time I’ve used it was at airport security when I forgot my doctors letter and only had a gp’s prescription for my other drugs but not Benepali. It worked !
Damamy, I attend the WGH and have never spoken with a nurse re: taking my methotrexate. I was given a prescription by the rheumatologist, with an information leaflet end of story, similarly with steroids. My family know what drugs I take , otherwise that's it.
Parking is a nigtmare ! I drive part of the way and then bus the last bit.
No card given to me or even mentioned, and I think bracelets in this case are probably unnecessary unless you have something else as well that may be life-threatening. RA isn’t - just debilitating and an inconvenience you are stuck with and best to keep positive and unadorned I think. The bracelets are never exactly good quality and complementary to the outfit! Good idea to have repeat prescription order form in your handbag but with computerised records I wouldn’t worry too much as medical people can access your records - as long as you have ID on you at all times - name and date of birth at least with added benefit of address, although the latter is not great if you also have house keys on you! This applies to anyone really, RA or not. The Sharps bin is a big giveaway when you go to the chemist but apart from that, life should be as normal as you can make it! Easy to say I know but you will soon get used to having this and once your symptoms are controlled, hopefully, you will be confirming the same. All best.
Hi I've had mxt injections for 6 years and had a thorough chat and explanation with a nurse but no mention of id bracelet or necklace. But the idea of carrying the mxt book is a good one will do that from now on except it takes my Drs 4 days to update it after a blood test so might have to think again! Have a good day everyone.
I don't even have a MTX book and about to start injections. Well if I can find the courage to take the first one. Maybe once I have I should ask for a book to record information.
I’ve never been given a card, nor told it was necessary, when prescribed MTX. I did have one a few years ago when I was on a blood thinner for a while after a suspected DVT, and got a MedicAlert bracelet, but as has been said, it’s not the most glam of accessories!
I too have a list of meds in the OneNote app, as much for my own benefit for whenever I’m asked for this info - my repeat prescriptions go straight to the pharmacy so I don’t have a paper copy - but as NMH says, no one knows my password, so wouldn’t be able to access the info!
I’m fairly sure I have my meds stored in my ICE details on my iPhone, but right now, I can’t remember for the life of me how to set it up, or even check that it’s up to date...something for me to figure out on this miserable rainy day!
As for parking at the WGH - that was my local hospital for many years and we learned quickly that bus or taxi was the only option. Nowadays, I attend Paisley Royal Alexandra, and it is even worse, especially being at the top of a massive hill! 😩
I have used a mauve (come in all colours) latex wrist band when on steroids and then also one for enbrel and other medical things. It has ICE details printed as well. It feels sort of trendy! Like I am off to a festival or somewhere similar ( its ok to dream) and are waterproof and lightweight. . If you have a latex allergy there are metal alternatives. I bought mine online.
I do carry an alert card for enbrel provided by Pfizer. Had it right from the start although they recently sent another as they updated the info on it. It is kept in my bag at all times and the wrist band also says ‘carries enbrel alert card’.
I had always assumed my husband would tell the necessary folks name and date of birth , what drugs I was taking and all the things wrong with me until I saw a very nasty accident on the motorway and decided to do something low key but easy for medics to see. Hope it is never needed.
The information can be on the inside of the wrist band so general public can’t read it! I also use the iPhone app!
I had a seriously bad experience with a locum gp prescribing the wrong antibiotic when on methotrexate so you may think I am over the top but that is the reason for my cautionary approach!
I've never carried a card for MTX and I've been on it over 35 years and wouldn't want any bracelet - I don't do jewellery, can't put it on/do up/undo etc.
Just surprised that you have been on MTX for so many years.....that's amazing! Are you still on MTX? You must have had many changes in the dosage! Have you had any bad reactions over the years? Truthfully, I find the fact you've been on it for 35 years could be very encouraging to many on here, I certainly do as I've only been on it for 5 years!
I was dx 1971, age 6, hence 47 years of the disease, now 54. I was told many years later that I was one of the first to go on MTX, never knew at the time, no computers and doctors never said anything. I was about 16-18 then. Always taken a fairly high dose 15mg-25mg orally, but the last few years I've injected, currently 20mg, as its slightly stronger that way and bypasses the gut. I had to stop before conceiving, had two healthy children, other than that I stopped due to neutropenia, but got over it and restarted.
MTX has been the best drug for me, I tried lots of others (before biologics) but gold didn't suit me. I still have joint destruction (all joints) and had lots surgery, but I have an aggressive form of RA so chances are no drug would have prevented damage and avoided surgery. At least MTX has been tried and tested unlike some of the newer drugs which I am more sceptical about than MTX!
I have my meds, with all info, saved as a pdf file on my laptop.I update it regularly. I also have several copies that I give to any new doctors/specialists that I'm going to see. They are pretty impressed with that!! Twice I've had to call an ambulance due to chest pain (turned out to be the ongoing esophageal spasm problem,but better to be safe after ECG tests,than sorry.Paramedics are not slow to tell you about waking up dead!!! )Re the bracelet.....my husband has worn one for 12 months since he had 2 very unlikely heart attacks.We also have stickers in and out of our car to notify anyone needing to help,plus a list of his meds and his cardiologist's details in the glove box.
I don't know if people have looked at what's on offer now, but there are fantastic options for the bands. Apparently some EDs don't like some styles because they look TOO much like jewellery and so are overlooked!!!!
I feel better that my husband is happy to wear one.
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)Re the bracelet.....my husband has worn one for 12 months since he had 2 very unlikely heart attacks.We also have stickers in and out of our car to notify anyone needing to help,plus a list of his meds and his cardiologist's details in the glove box. 
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