Starting Abatacept

dibdab
dibdab Member Posts: 1,498
edited 13. Jun 2019, 06:57 in Living with arthritis
Tomorrow I start abatacept, the injection pens arrived today and are safely stowed in the fridge, I have the sharps bin and various bags of swabs/plasters etc and a nurse from H at H is due to visit tomorrow to show me how to inject. Problem is I have no idea at what time she/he plans to arrive they were supposed to ring ahead to make an appointment-here's hoping they ring at some point before bed time.


So, any advice or insights to offer from anyone who take abatacept? It says in the handbook to take them out of the fridge 30 minutes before using them, does it have to be exactly 30 minutes? Is it better to inject in the stomach or the thigh- I used to inject meth in my tummy but got some horrendous bruises. How have folks managed taking them on holiday? How do you keep them at the correct temperature for the journey-or do you just miss a dose when you go away? Is there anything I need to ask the nurse tomorrow-all insights much appreciated!!!!!


Some of you know I was flown home from South Africa with back trouble a few weeks ago and was advised to stop all my RA meds in preparation for surgery, however the neurosurgeon here wants to try the wait and see method of treatment so I'm due to restart treatment using an entirely new medication for me, it's a bit daunting. However the RA is beginning to make itself felt despite the hefty doses of pain relief and anti inflammatories I am currently ingesting, so I hope it clicks in soon.


In terms of the back trouble, the neurosurgeon has recommended gradually reducing pain meds whilst increasing activity, being remarkably compliant that's what I'm doing, but as a result an constantly uncomfortable-whilst the pain isn't agonising it's annoyingly persistent. Not sure how much pain I need to be in to increase meds back up to pre-existing dosage, which is what he advised. I have another MRI booked for June 16th so that he can compare with the originals and see if approaching 3 months of rest and pain relief has improved the situation, I shall be interested in the results, the NHS is under so much pressure I wonder whether the watch and wait approach is a way of keeping waiting lists shorter.


I'd very much appreciate any insight or advice anyone can offer.


Thanks

Deb x

Comments

  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Sorry, I can't help at all, Deb. I've never done the injections of abatacept or any other. But I do hope it all goes well and good luck, too, for the neuro appointment.

    Re the 'wait and see' question - I doubt it's all to do with costs though some of it might be. Having a son in USA, I'm aware that surgeons are always happier to jump in when they're getting paid for doing so. Personally, especially in an area like the spine, I think I prefer the wait and see approach though it's always easier to recommend it when it's not one's own back pain :roll:
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. May 2019, 01:56
    Thanks Sticky.I absolutely agree that caution around spinal issues is a good plan. I'm following the instructions to slowly reduce meds and do more, but yesterday I was really sore by bedtime and this morning the whole of my lower back is really sore and I'm incredibly weary, so it's a lazy day in the recliner with my kindle and crochet to see if resting helps.

    In terms of the abatacept, HatH have screwed up, I have the injection safely tucked in the fridge but no sign of a nurse, I rang....the nurse has been booked for 9th July :shock: the date when my second delivery of abatacept is due! The guy on the switch board has emailed the nurses to try to arrange an earlier visit. If nothing happens I shall ring the helpline and ask if the Remy nurses will do the training there instead.

    One day something will go to plan.....but clearly not just yet :lol:
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Oh for crying out loud! Talk about it never rains but it pours :mrgreen: That's not good and, indeed, not good enough. As DD often reminds us, we have to do our own 'medmin' but these matters always fall on us just when we're bowed down with other stuff. I can only wish you luck. I think you're due a spot of it t115006
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    Hi Deb , good luck with the biologic, I have been on it since last september , had no problems or side effects from it , but its not ant better than the last biologic I was on which was tablet Tofacitinib (Xeljanz® ,

    only one of the biologic I had problems with & that was because of the preservatives they put in the injections , I am waiting for some joint replacements & told will have to stop the biologics for I can have them done , dont worry about the drug you will be fine

    edit : just read your last post , all these firms are the same , & cant organise a drinking party in a brewery
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You have self-injected before, are not a stupid woman, I do not see why you need a lesson but what do I know? :lol:

    I use my thighs for the meth and stomach for the imraldi because that is a bigger whack and the stomach has fewer nerve endings. I've had some stonking bruises in the past and daresay I will again but a few days of witch-hazel sorts it.

    As for holidays I followed the example of my hospital, when they were doing the injections they weren't bothered if I missed a fortnight so neither am I. I take the meth but only the cold stuff if we are away for longer. That is easily packed in a small cool bag with an ice block or two but if I was flying somewhere I wouldn't bother with the palaver. The meth sharps bin does for both but it is a bulky thing to pack plus The Spouse has the habit of fully closing it. :roll: DD
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    After 2 lots of phone calls to H at H I have just h ad a text to say a nurse will call tomorrow between 8 and 11 am- I wait with baited breath to see if they arrive.


    DD I believe the pens are slightly different from the meth ones I used, they certainly look different, and reading the paperwork suggests it has some kind of 2 stage delivery system? The bumph says not to inject where there are scars or stretch marks, and having carried twins which were almost 7lb each I have a stomach full of stretch marks :( -I think of them as my badge of achievement. I think like you I'll just lose a dose if we're going on holiday-having said which after my African adventure I don't think I'll ever be able to afford travel insurance again :oops:

    Trepolpen I had fun with H at H when they delivered my meth a few years ago, so I am far from surprised. Here's hoping they surprise me in the future.
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I hope that, by now, they have arrived, done their job and left you feeling reassured. What a palaver! But well done on the 'medmin' chasing up. What a pity that we invariably have to do it when we feeling least on top of things.

    Stretch marks? Wear them with pride. Thank God I don't have to inject. I have scars everywhere :lol:

    Thanks to my latest hospital stays, our transatlantic insurance now costs much more than our flights. We use a broker. The usual sites won't touch me :roll:
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    So the nurse came, read all the information I had already read and understood, watched me do the injection and commented me for my "excellent technique". The encounter lasted almost an hour and struck me as a huge waste of human resources, but I jumped through the necessary hoops. To date not a single side effect and no stinging from the injection. Happy days. :D
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Excellent. I hope it continues in that vein.

    Sadly, I can understand the need to 'waste resources' in that way. It's all, like many other things, about covering one's back. Can you imagine the kerfuffle and damages payment if they decided that anyone who'd self-injected anything before didn't need to be guided through the proces but then something went wrong. We are a litiginous society. More's the pity.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    So, quick update, I'm two weeks into abatacept, and it's really easy and so far no nausea, but equally no improvement in joints yet-not that I expected it to work this quickly.

    A disconcerting side effect (I think) is that I have become terribly dizzy-even lying still in bed makes me dizzy. I rang the help line at hospital for 2 days without getting through and left a message but no response yet, so I went to see the GP. She says it sounds a lot like vertigo but is suspicious that it's linked to the abatacept because of it's beginning within 3 days of the 1st dose, and it's listed in potential side effects. She's given me yet another medication for the dizziness which is helping. As a point to ponder, vertigo and crutches aren't a good combination!!!
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    This is probably completely irrelevant :roll: but, on the any-port-in-a-storm basis and if-it-does-you-no-good-it'll-do-you-no-harm :roll: :roll: both Mr SW and our elder son have recently had dizziness problems which were diagnosed (in two different continents :wink: ) as being a minor problem with ear crystals. This sounded like complete mumbo jumbo to me. I expected the treatment to be eating fairy dust while sitting on a toadstool and thinking beautiful thoughts but, no. Ear crystals do exist and can get out of alignment and this is easily fixed though it can go wrong again from time to time. Have a read at what the NHS says https://tinyurl.com/an3p4km . I rather doubt this is your problem but also rather hope it is as it's so easily and painlessly sorted.
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thanks Sticky, I'll have a read. I eventually got a call back from rheumy help line who confirmed it's likely to be the abatacept but the body should adjust after a few weeks, so I'll plod on for a while and see. Fortunately the pills from the GP seem to help a little and I haven't fallen over yet! Though I did end up sitting back on my bed this morning extremely hastily as the world spun.
    Deb xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It sounds as though the abatacept is responsible - what a flaming nuisance. My imraldi is a two-click thing, innate to stretch my skin and press down to begin the injection. The second click indicates it's done. I hope it does help - I hadn't appreciated how well the humira was doing until I started the fake
    - sorry, bio-completely-different - version. DD

    PS A surfeit of Pimms causes a much more pleasurable spinning world, doesn't it? :lol:
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    DD, I like the sound of the Pimms spin- maybe if I tried I wouldn't notice the drug induced one quite so much :lol: Not sure it would help the crutch action though.
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    My first thought was that, if one spins you one way and the other spins you the other you'll be fine. My second thought was that wonderful old Flanders and Swann song The Honeysuckle and the Bindweed.

    Failing all that, there's the prescribed medicine :wink:
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Happy to report that today feels a little better so far, fingers crossed it eases naturally-just one head spinning pill so far today! :lol:
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    That sounds a bit better. I, too, hope your body just readjusts to the new med. Vertigo, though potentially a mild problem, is very disconcerting and can mess up our lives far more than it warrants. I applaud your cheerfulness, Deb. I'd be a real grumpy old cow :lol:

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