hi everyone, the Dr rang me on Friday and to be honest was very nice, he'd read that I'd been under a private consultant and I'd been prescribed metoject, I said that someone on here springcross had shared a link on how to use it and he sorted out the prescription, when I asked about the sharps bin, he said the chemist should give me one or ask the nurse for one at the doctors.
I mentioned that I'd asked a number of times for a copy of my blood test results for me to send to the consultant and I'd already filled in 2 authorisation forms, he said he'd let the lady who sorts the blood tests out know so fingers crossed I won't have any problems getting them now.
I also mentioned that I'd had this awful tingling feeling in both my feet and legs up to my knees, the best way to describe it was imagine a spring coil and when you pull it apart and let go it's the vibration that it gives, he saw that my b12 had been pretty low, I said that previously I'd been on 5mg of b12 and now I was only on 1mg twice a day, he replied that previously it was 0.5mg and that I was now on double that, I asked if I could increase it to 3mg a day which he ummed and arred about then said yes it should be ok as your body only uses what it needs, I'm to give it a couple of months and if no improvement get back in touch.
When I googled (I know :)) some of the symptoms of b12 deficiency were feeling sick, giddy & confused, I've had all of these including finding it difficult to put a sentence together and struggling for words, and just put it down to the other meds (MTX, Leflunomide, Hydroxy, Etoricoxib, Gabapentin) now I'm wondering if it's been low b12 in the main all along aswell as some side effects of the meds.
Anyway, back to the metoject, I asked the chemist about the sharps bin who said it should have been put on prescription but I could buy one, it was only £1.54 so no probs, I also asked if the metoject came with antiseptic wipes which it doesn't, they said it's fine to just inject without using one? does this seem right? does anyone else not use antiseptic wipes with no problem? I had to go back to the chemist today to pick up the remaining metoject pens and thought I'd rather be safe than sorry and buy some wipes, the chemist doesn't stock them! said I can get them online through amazon, that may be but I have to inject tonight so I'm not going to get any today.
Slightly anxious and nervous about using it for the first time so any tips very welcome, I wanted to inject my thigh first as none of the medication has had any effect on my hamstring and hoping that injecting there I may get some relief, probably a stupid assumption lol. I know you have to pinch the skin up and hold it for the duration of the injection but when I tried to do this last night as a practice run I couldn't get hold of the skin properly to hold it for more than a few seconds, I'd like to think it's because I don't have any fat on my legs could I be doing it wrong? I was trying the top of my thigh.
Thank you for any advice x
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Garnacha
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Hi Garnacha. The Metoject always used to come with the wipes but for some reason no longer do, at least not where I live. I just wash the area beforehand with a little soap and water and dry it off, wait until it's completely dry and then inject - I've been doing that for about three months now although I do prefer the wipes to be honest but they stopped including them several months ago. As regards the pinching of the skin, do you sit down whilst doing it? Also, if you still can't get enough then put it in the abdomen as it will probably be much easier. I have a problem with my left knee and early meniscus disease but although I use four points in turn for my injections, when I inject my left thigh, it makes no difference to the discomfort of the problem I have in my left knee. I hope this makes sense. Good luck. 🤞 x
Thank you and yes totally makes sense, I think for the first time I'll try my stomach first and then try to rotate where I do it, I'm nervous but think my husband is looking forward to me doing it lol, sadistic comes to mind 😂😂 x
Hi G, I did my first methoject last Fri, I was given a load of like lint swabs(I was thinking what you meant to do with these) as I injected I didn't feel a thing so double checked and it went in ( I did my tummy) there was no needle mark just a little residue left on the skin, so used the lint to clean it off, after I thought is that it. 😂 I don't no what I was expecting .. Good luck x
They've stopped putting the wipes in the box so I've stopped using them. I make sure that I'm clean before I inject but otherwise don't worry about it.I inject into my thigh and was shown how to do it by a nurse. No mention of pinching the skin, I just press the pen against my thigh, press and count to five after the spring has worked. I do try to avoid thread veins as on the rare occasion that I've hit one, I've had some bleeding afterwards - not enough to warrant a plaster but I've had to hold the cotton wool pad against it for longer.
I was very careful the first few times - mainly because the nurse was very insistent on doing everything "just so" but after reading other people's experiences on here I've relaxed about it.
Thank you, I thought they would have come in the box too so opened it in the chemist to check, think it's just confidence I need so next dose I'll try what you do and be able to just put the pen against my thigh & press. x
I've never used the alcohol wipes, with the metoject I didn't pinch either just put it against my thigh and did it.
If it helps at all I thought the metoject pen was really well designed and didn't hurt. I found the expectation was worse.
Vitamin B12 deficiency have funny symptoms, my friend was deficient and she got terrible pins and needles in her fingers and toes, hope you levels get back to normal soon x
Thank you, now I've heard from you and Boxerlady how to do it in the thigh it's given me more confidence, only thing I'm also confused about is the link that springcross sent me said to hold the pen at 90 degrees, the leaflet enclosed with my metoject says perpendicular, do I hold it at 90 degrees or straight up? x
I found an awesome one who works for Bath Royal she wants a referral from either GP or current rhematology (it is great, she will get to see my medical history)but I don't want my current rheumy team to know as I think they might get a bit ratty (I might be wrong) and I can't afford to go 100% private if they did get ratty and I dont want to bother the GP.
I think I'm just a bit fed up with fighting at the moment so will see how I get on. Trying to do lots of self help things like stretches etc but I've just cleaned the bathroom and have hands so hot and swollen I could power a small village from them 😁
aaw, sorry that they won't just give you an appointment without a referral, it's stupid really as you see Bupa advertising that you can phone and make an appointment with whoever, never say you need to get a referral first.
Does the one you found also conduct NHS appointments at the same hospital your current rheumy team are based? if not, I'm sure they wouldn't know, can't imagine them getting together for a gossip, I don't think anyone does any joined up thinking anymore 😂 but fully understand what you mean, I've just sent a followup email to my surgery outlining the conversation I had with the Dr last week to say I should be able to have copies of my blood test results and that the increase in leflunomide that the private consultant put on my letter to the surgery hasn't been updated, the hydromol, dermol & double base gel the dermatologist said to be on repeat isn't on the App, I also asked when or if I'll be called for my Covid jab saying the JCVI have recommended those with underlying health conditions should be given a primary dose, probably put the cat among the pigeons now 🐈 🐦😂 x
Go for it, especially as your GP is really nice, I'm sure he / she will understand your reasons, even if it's just to put your mind at rest it'll be worth it xx
With Private Medical Insurance companies like BUPA ……you do need a referral from your GP before you get to see a Consultant,& if the condition you want treated is not covered by the Annual scheme subscription you pay, they will not authorise the consult.
When you do see a Consultant privately they always write to your GP….he is sort of the gatekeeper….your GP must know what drugs you are taking….he cannot alter them except under the instruction of the consultant he knows is treating you. If another doctor wants to add/remove drugs….,the GP will speak/write to both doctors to sort the situation. If I understand your letter correctly…the doctor who recommended an increase in your Leflunomide is not your regular rheumatologist & your GP has a shared care arrangement with him?
If that is the situation, he will need to speak to probably both doctors before he alters a prescription.
It would be dangerous for somebody already on medication from one doctor, to be prescribed drugs by another doctor for the same condition….so that is why GPs are kept in the loop.
Hi, the consultant who has prescribed all my meds including the increase in leflunomide is private and sends letters to my GP for shared care, the consultant asked my GP to refer me to the NHS rheumatology department in January this year, the GP didn't do this until I chased them up in March, I managed to get hold of the NHS department in May as I hadn't heard anything and they confirmed they'd had the referral but at present there's a 77 week waiting list!
I don't have the luxury of contacting the helpline or rheumy nurses that most others do, but, to be fair to my consultant, when I've e-mailed with any problems such as the medication not working or the pain getting worse, he has usually rung me to discuss and if needed arranged a f2f appointment. He used to work for the NHS but only does private work now which I didn't know at the time of my first few appointments. x
As long as it’s the same doctor.That must have been a nasty shock….to find you couldn’t transfer to your chosen doctor on the NHS.Have you called around any other hospital Rheumy departments to see if any of them have a shorter waiting list? You might strike lucky.
yes it was, but still thought I would be seen earlier than what will probably be Christmas 2022 😂
To be honest, it never crossed my mind there may be other hospital departments, where I live, the 2 biggest hospitals are part of the same trust, any others that may offer it are at least an hour away, but thank you it could be an option to try x
Be careful you don’t fall between two stools……you can of course see a Consultant Rheumatologist privately, lots of us do, but once you get her opinion you will have to choose…you can’t have an NHS Doctor prescribing one treatment & a private doctor another.NHS Doctors are quite used to their patients seeking a second opinion from a Private doctor,& they don’t get “ratty”…….as you put it.
Have you made sure the Private doctor you want to see will take you on to her NHS list if you decide you would prefer to be treated by her? A single private consult is often a good idea, but for most ongoing private treatment is out of the question.
If you don’t ask your GP ….how are you going to get to get the second opinion…..GPs will usually write a referral letter if you explain you feel you need a new pair of eyes on your RA.
The private consultants hospital is in a different health authority to where I live so I'm not sure if I could be treated by the NHS there, not sure how it all works 🤷♀️
I've got a few more ENT appointments and MRIs coming up so not sure if I have the will to push on with private rheumatology consultation, running out of juice right now 😁
My family would like me to get a second opinion, maybe get a second wind in a few weeks 👍
Just maybe whatever medication you are on may kick in if you can feel calmer.Many were the times I saw my rheumy in the early days …having the “ these drugs aren’t working “ speech prepared……..only to be persuaded it’s not a case of weeks with RA…more like months.
I believe you can be treated outside your HA these days…but the consultant will still report back to your GP.
I do know people who are registered with a GP near their employment, as it makes booking appointments without taking time off work…but I don’t know how that works.
I find it's much easier to inject into my stomach, it's trial and error. Hold the pen flat against your skin push down click the button job done, I am the world's softest when it comes to needles but I don't even think about it now 👍 as for the alcohol wipes you use to get they were little squares of evilness....it the skin wasn't dry before you injected it didn't half sting 😬😂
My Metoject always has antiseptic wipes, best to check in one of the boxes before buying any. That said I don't use them because I found early on it made the injection sting (this was prefilled syringe not the pen enabling me to try different ways of injecting & letting the site dry with none of them any better than another). As I inject as soon as I’ve dried myself after my morning shower my skin is clean & I’ve not had any injection site infections in 11 years. I inject into my tum, the way I was shown when I switched to injections. I have tried my thigh but it hurt & bruised, injecting into my tum doesn’t hurt at all. You may be able to pinch the skin a little better too, that way you don't feel anything but the needle sheath being released. Just leave 2 or 3 inches either side of your tummy button. Remember to alternate which side you inject in, hold the pen vertical & hold for a few seconds once released. I write L or R on each box so I don't need to think back to which side I injected the previous week. Whilst it's a small molecule med injecting targeting a specific joint won't help I’m afraid. It is a purple lidded sharps box they sold you wasn’t it? It's necessary as cytotoxic/cytostatic meds have to be incinerated.
Remember to take your folic acid as directed. They really can be very helpful little tablets.
Can you remember when the tingling started Deb? Would it go back as far as March, when you started leflunomide do you think? I ask because I had to come off LEF because it caused peripheral neuropathy & a return of carpal tunnel in both hands. I had nerve conduction tests both whilst taking LEF & again once I’d halted it. Repeated tests showed improvement & the longer I was off it the symptoms went. Your problems could well be due to B12 but if it's found not to it might be an idea to ask your Rheumy about LEF as it is a listed side effect. My Rheumy was a little hesitant to refer me to Neurology as she said it was a rare side effect (NICE says otherwise, common/very common) but I stood my ground as I’d not had any other meds introduced & the symptoms started a few weeks after starting LEF.
I hope some of this helps. You'll soon be injecting without giving it a second thought. ☺️
Thank you, I checked the box at the chemist and definitely no wipe in there but reading what most people have put think I won't use one (my son has just given me 2 he uses for face painting).
They sold me a yellow box that's pretty small, when I spoke to Stericycle who apparently are the ones who arrange collection they said to give 3 - 4 weeks notice! I said the box I've got will probably only take 4 of the pens but, they said I'd be given a replacement that would be bigger.
I've been taking b12 tablets for around 18 months & before I started Lef in March, apparently my b12 blood test was fine in April, they said that I didn't need to take B12 anymore as it stores in the body for 2 years so seems a bit funny to me that around July / August it had dropped, they sent me a letter to say they'd investigated it to check for crohn's etc (I don't see how they checked) and said it's probably caused by diet which I know it isn't, as it was still on my App as a repeat I just ordered it again through that, seems that it must have dropped again but I don't have access to the latest blood test results (yet), will have to see how it goes I guess taking 3mg a day, I was slightly worried as I'd read that complications of low b12 can be permanent damage to nerves. I'm taking gabapentin too at the moment which I believe is for nerves as the consultant said the burning in my arms is probably caused by inflammation pressing on the nerves, could gabapentin be disguising some of the effects of low b12 and they may actually be worse than I know, it's definitely something to think about, thank you for letting me know, I'll keep a close eye on it, especially as they've just increased the dose of lef from 10mg to 20mg.
If it's not one thing it's another🙄 😂 x
You will be fine . Wipes usually come with metoject but I don’t bother I usually have a shower first . Yes sharps bins should be on prescription for the first and if you leave a full one at your doctors they should replace . I normally just squeeze the fleshy part together rather than just the skin. Good luck but you won’t need it 😉x
Thank you, I thought the sharps bin would come automatically with the prescription, and that it wouldn't mean me having to ring around to find out who collects them and then have to get back to the surgery to ask them to send a referral form for collection, it's mad how there's no joined up thinking anywhere. x
I have to collect my sharps bin from the hospital rheumy department! I took the large one last time - meant to last for 6 months - but I'm hoping to make it last the year which is when I'm meant to to have my next appointment! 😂 I managed to get nearly 6 months-worth into the smaller one last time (meant to be for 3 months) so I'm hoping for the best! 🤞😉
I was told to discard the wipe if I happened to find one in the box 🤣 Just clean with wet cotton wool and then dry
Also told to stretch the skin taunt before injecting.
It really isn‘t a problem. You will be fine.
As someone mentioned above the biggest thing first time was the loud click and vibration that made me jump and I nearly dropped it. Thankfully my Rheumy nurse was on the ball and kept at me to push my hand and the injection down.
Just did it! 😃 did it in my stomach, totally painless 😀 not sure if I've put it in the wrong place, did it Left of my belly button but further up, is this OK? There was 1 or 2 tiny drops left on the end, it was so quick & as I didn't feel anything may have taken it out a bit soon as I thought it would be dripping down my stomach 🤣 had an achy feeling after for a couple of minutes but seems fine now.
Thank you so much everyone for all your help & advice, so appreciated 🥰🥰🥰 xxx
Well done, it 's so easy isn't it, the nurse told me to count to five before removing the pen. I ordered my bin through my health centre - I had to fill a form in (just a few areas) for the local council. The health centre gave me my first sharps bin and I had to ring the council when it was full - they come and collect it on a certain day and leave me a new one, it works really well.
Wish our system was as easy, the chemist said I had to ring the local authority, they said I had to ring a different number which turned out to be the University of Wales Heath hospital, they said I had to ring another different number which was a company called Stericycle based in Leeds! They said I have to get the surgery to send them a referral form, jeez they don't make it easy, I e-mailed the surgery yesterday but have had problems with my e-mails since Monday where I was locked out, got it sorted (I thought) yesterday afternoon but found then I can only receive them not send them!!! Still waiting for our IT guy to sort the problem out 🙄 x
There you go… first one done! It's more the thought of injecting that's a concern. It doesn’t matter where you inject in your tum as long as it's not too near your tummy button. If you have any residue on the skin wipe it thoroughly with soap & water on a cotton wool pad & dispose of it in your sharps bin.
Since they stopped doing antiseptic wipes, I made my own. Bought a bottle of surgical spirits and using my wife’s cosmetic face wipe pad ( could also use a pad of cotton wool ) I swab the area and then inject.
Thank you, I was going to buy some TCP and dilute it as recommended by the chemist but, thought I'll probably only use it once as the smell will follow me around for days 😂 so didn't bother, I did wipe the area first with just some water and fingers crossed no problems x
Morning, I used injections and never used wipes before injecting, I never found any issues. I always injected into my thigh after a shower. ask your GP about a sharps bin, they should provide one for you, and see if your local council will collect the bin once full. The only thing I would say is to keep a record of any side affects you may get after starting the injections, just incase you need to explain to your medical team. Good Luck. x
I have been on me tike this fir years. You can do it without wipes. They are on ama one very cheap. I use my thigh. Just put it against the leg and push. Don’t overthink it and I am sure you will be fine. Good luck with it. What part of country are you? My Gp will not prescribe it. I get my prrescription from Rheims? Good luck
Thank you, I live in Wales but it was the consultant who said for me to have metoject instead of oral MTX and wrote to my GP asking him to prescribe it for me x
Hi. Think it’s down to personal choice. I used to inject in the thigh but found it painful and now prefer to inject in my tummy … although I do have plenty to pinch 😆 I found the alcohol wipes that were included made the injection site sting and when I told my rheumy nurse she said that as long as your clean (recently showered) that there was no need for the wipe… so I know longer use them. Good luck
Well when I started mine I had a nurse come to my home from HAH she was lovely Said don’t use the wipe as really bad for the skin use them clean your specs 😂 ! Mine don’t have them in anymore either .
I do mine too if thighs sitting down don’t she said no need to pinch skin just push down so bottom bit goes up press hold till count if 10 never fails … I do occasionally get a bruise
Also not sure what sharps box you have I was told Always make sure it has a PURPLE lid as they get incinerated as Toxic …
😂 yep maybe but maybe worth a mention as those are for needles really least you got something it’s a journey this RA life just keeps giving lol I get my stuff delivered by Scieneus old Health care at home ! (Much easier name) well good luck x
Both yellow & purple lidded sharps boxes are disposed of by incineration only Jojo. My latest one takes up a lot of room, it's 24 litre capacity, won't need to return it for some time yet! 😵💫
Oh ok that’s good just what the nurse who did my metrojet training said .. but as I’ve learnt just being on here how peoples experience is so different isn’t it … Yes should hold a few 😂 x
Thank you, yes it went really well, in fact I wasn't sure if it had worked as I didn't feel a thing 😅 felt really weird though after an hour or so & had to go to bed, guessing it's because it goes into your system quicker , with oral tablets I'd probably already be in bed so wouldn't notice xx
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I couldn't get hold of the skin properly to hold it for more than a few seconds, I'd like to think it's because I don't have any fat on my legs 
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