Sorry in advance

Hello, apologies in advance as I know I'm an idiot but I can't help it. I was diagnosed with RA this summer and they seem to think it's a more aggressive form because of the damage that they observed over a small period of time. I was put on 25mg methotrexate and hydroxychloroquine straight away. After 8 weeks or so it got to a point where I couldn't drink because it was making me gag because all I could associate drinking with was taking medicine that was making me throw up and feel awful, so I stopped taking everything. They are arensging for me to have the injections but I have an extreme needle phobia since I was about three and had a branch impale my leg (funny now to look back on 😆) and I keep declining steroids in my shOlder and hands because I'm petrified of needles. I'm not stupid and I know I need treatment and even in loads of pain I think I'm just in denial. My parents are both nurses and they don't see it from my perspective, they just get frustrated and I feel like I have nowhere to turn. I've been given naproxen but it doesn't seem to be touching the pain either. I don't know what to do :-(

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  • Have you asked for a Depomedrone injection in your thigh....that should calm down the worst of your pain & then maybe you could be calm enough to start Mtx injections?

    It doesn't hurt or drag on like a specific jab into a joint...just one quick stingy feeling& it's done, & for a lot of people it really calms down the terrible pain.

    Then you might be able to work up to the full 25 mg oral Mtx you were prescribed without the horrid symptoms you experienced.

    . Good luck.....just shut your eyes &'count to 50 & it will be over...I'm not being flippant but constant pain will really bring you down,

  • Thankyou for your kind words and suggestions I will ask for it when I visit next week :-)

  • I had an extreme needle phobia too. In a nutshell I had tuberculosis as a child, and I had to have a daily injection for a year. In those days the district nurse came round ever day to do it, but of course she was in a hurry so her approach was to grab me, hold me down and inject me. I tried running away, biting her, hiding etc etc but she would still get me one way or another no matter how much I screamed....

    Anyway I now inject methotrexate weekly with no problems. It was hard to start with as I had to face up to my fears and accept that as well as injecting myself I had to have regular blood tests. But I did it, and I'm proud of myself for managing. And if I can do it, so can you.

    I think what helped was realising that if I didn't get the disease under control I would probably end up with more awful medical procedures as I'd end up having to have joint replacements and other surgery - which is as scary. So try to find a way to put this in perspective as I know I had blown it out of all proportion. What would you do if you were pregnant and needed an injection to help your baby? No different really as keeping as healthy as you can now will help your children.

  • Thankyou and sorry to hear your experience as a child. I know I need to buck my idea up and just do it but I'd rather take pain medication then injections which I know in my head is silly but not my heart.

    I did have to have surgery last year as I was pregnant with twins and it involved a large camera and laser being inserted via needles into my tummy to try and save them, and unfortunately one of my boys passed away, so this hasn't helped either as it was horrific and it was a hunungous needle with an awful outcome.

    These have been the worst 2 years of my life with that happening, my other twin in NICU for four months then being diagnosed with RA. 😩

  • Hi

    I'm so sorry to read about the awful time you've had the past couple of years. Sometimes life just doesn't seem fair does it?

    Now you have this condition to contend with, but you will do it, and fortunately for us, outcomes are much better these days than they used to be.

    Self injecting is so much easier than I thought it would be. When I was on enbrel, it was a pen, and I couldn't even see the needle. I'm now on abatacept and was shocked when the nurse brought it round.....I could see the needle....gulp...but it's fine,it's so easy and most importantly it works.....I'm almost back to normal after being in a pretty bad way. Perhaps your mum or dad can do it for you for a while until you gain confidance and courage?

    Good luck to you and I hope 2017 turns out to be a good year for you.

  • Have you asked your GP for help with the needle phobia? There are techniques, like cognitive behavioural therapy (CBT), which can help a lot.

    You could also look at other ways of controlling the RA like diet, have you already considered this? Not enough on it's own but may mean you don't need to take so many drugs.

    And mediation, yoga, swimming all help to make you feel better in yourself. Maybe worth a try?

  • Thankyou I was referred for hypnotherapy but I never received an appointment as the service had been suspended, as they thought that may help. We do have a strict diet as I'm willing to try anything :-)

  • What sort of things do you eat and what do you avoid?

  • sorry to hear about your problems with meds. I too had a phobia about taking the stack of mtx tablets once a week, so moved to injections after a few years but then developed an aversion to them too over time. Now I take leflunomide daily and that's been ok. So, don't despair, you may need some injections to help get things under control, but there should be alternatives for you on a longer term basis. Wishing you speedy results.

  • Thankyou I am seeing my rheumatologist on the 20th Dec so hopefully we can come up with a good idea :-)

  • You're not the first who's written about being needle phobic here & it usually relates to it being suggested they advance onto MTX injections. I hope some respond to your post & (hopefully!) share with you how they got over their fears.

    You say your RD is thought to be aggressive. I don't want you overly worry you but have you considered if you eventually need to progress onto anti-TNF's or biologics none of them are in tablet form. If you could overcome your fear or seek help now, even as Matilda has suggested with CBT, it would serve you well further down the line.

    I must say though not needle phobic I think the pen injection is far better for someone who is, you hardly notice the needle as it's covered by a plastic sleeve, unlike the prefilled syringes which were traditional syryinges. If you haven't seen the MTX pen & you feel you can have a look at this page & the video if you feel really brave this is the link metoject.co.uk/healthcare-p...

    I hope you can overcome this Amy, try to think of it as being the next step to responding better to your meds. x

  • Thankyou so much, I have had a pen type injection after my c section that I had to inject every day, my GP said I would just get syringes and vials of medicine though?

  • Sounds odd. Mostly pens are available and they are far more user friendly than syringes and needles. Well worth considering!

  • Well if you can cope with the pen type, then insist that's what they prescribe. They are available across the U.K. and perhaps your doctor is just being miserly by not offering them as they are a little more expensive . But if you insist then they should be ok about it. I found the pens very easy, but have recently had to go back to syringes as where I am now (outside UK) doesn't do pens and I miss them!

    Perhaps your GP has a strange sense of humour and was joking?

  • That's quite backwards, I've not had to do that for the 7 years I've been injecting MTX. It will cost considerably less for your GP Practice certainly but I would appeal to your Rheumy (who is the initial prescriber & has a say in how it's prescribed) to recommend to your GP you have the pens given your concerns about injecting. If anything will put you off it's having to prep the syringe & medicatio! It can be quite fiddly too because it's a small bottle the MTX is in so I would really be quite forceful about this if you're going to go ahead & try injecting. With the pen you really don't notice the needle injecting either & as I said before it's covered with a sleeve so you really don't see it whilst you're injecting, by far the better way for someone not keen seeing the actual procedure. You are in the UK aren't you? I'm pretty sure patient choice (prescribing) could be enforced here if your Rheumy isn't forthcoming, I'll check.

  • Just adding nmh...RTX is only two infusions every six months. Where I had my first treatment we all sat & chatted - when we were awake - & didn't really notice the Canula in our arms....maybe that might help if you Amyfarq should progress to Biologics.

  • I may be wrong but I think anti-TNF's are usually the first meds before biologics, though correct me if I'm wrong. Again I think they're all injections (except for infliximab (Remicade), the more commonly used ones anyway. I do see what you're meaning though AC (I just can't call you by your proper name!) about chatting & sleeping, but still a canula may be a concern to a needle phobic initially.

  • Thankyou and also to AC, cannulas are fine I've had so many of them that I find them bearable, It's the thought of weekly injections in my own home, my own sanctuary that I'm dreading.

  • The injecting "thing" I was shown was just like a thick biro pen made of pale green plastic...nothing like a needle or a syringe. You just put the nib end against your skin & with very little pressure the solution was shot into your leg or wherever you decided you wanted it.

    Sadly I had to have infusions.....purely because previous health issues precluded the pen thingy!

  • I wonder if your Practice Nurse would do it for you at the Surgery until you're comfortable doing it yourself? It might be worth asking. Do you see the same one each time for drug monitoring bloods?

  • Call me Kathy,,,,,I just wondered if inserting a Canula might be less scary than an actual injection & you would probably be surrounded by people having the same thing which might give Confidence?

    I'm not well up on what is given when...I went from Sfz, to Mtx to Leflunomide To RTX over 8 years.

    Been at hospital,today having new cast on broken wrist.....young doctor there was so up herself she nearly needed a cast.......round her neck. I was sitting there having had tempcast removed with my bruised swollen wrist in full view & she asked why I was there?

    But you would have been proud of my restraint...I just limply held up my wrist & gave a pathetic smile...instead of .........!

    .

  • Yes, I think you're right Kathy (thanks!), as you'll know Amy's said cannulas are bearable her having had many so that's good. It's the thought of having to inject at home, which I can understand, her home should be a comfortable place not one she connects with something she really doesn't like the idea of doing.

    You've just made me chuckle, I can think of many in my local hospital could do with the same! Do they not use their eyes?! I hope it's comfortable, my second cast on my leg (achilles rupture) was more uncomfortable than the first, I put it down to the air getting to it & me having a good old scratch while I could so my own fault really!

  • I don't think social graces are included at med school here.

    In the US a young doc would say who she was & ask what she could do for her patient.,

    Don't take any notice of me I am just crabby cos I'm in this cast for 6 weeks & I can't get the sleeves of any decent tops over it.

  • Time to treat yourself in that case, if you'll still have it on at Christmas perhaps something you wouldn't normally buy?

    I think many staff in hospital are so overworked they forget the niceties are more often than not needed. It just takes a second doesn't it, some have the capability to put themselves in you shoes, others no so much.

  • A friend of mine at work had a needle phobia and needed cancer treatment so they gave her hypnotherapy which helped greatly and she successfully went through with her treatment. She also had some other therapy work to help her.

    Good luck

    Ali

  • I had a problem with Humira in using the pen as as it stung, my surgery were happy to do this for me every fortnight for 8 years. When they changed the formula recently taking out the cause of the sting, I now do it myself, hopefully having a nurse do the injection will help until you feel ready to do it yourself. Wishing all the best. X

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