My humira is being changed.

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dreamdaisy
dreamdaisy Member Posts: 31,520
edited 30. Jun 2019, 07:01 in Living with arthritis
I don't mind that in the slightest, I know the age of biosimilars is here and money is an issue but I think it only polite to tell the patient that it's happening, don't you? Healthcare at Home rang yesterday to arrange a delivery but could not as I was unaware I was being moved from humira to imraldi: they said the hospital should have sent me a letter. I rang the hospital who told me that HaH should have sent the letter. My argument that HaH did not diagnose me or rarely see me in clinic, have never given me a choice of medication, do not deal with my blood test results and do not send in the prescription cut no ice with the rheumatology nurse on the other end of the line. She trotted out the usual stuff but I feel I am right, surely the hospital is the correct organisation to tell me what is going on with me, my meds and everything. Idiots, morons and twerps.

When I was working I earned my money by showing an interest in my clients, helping them to progress, achieve and succeed whilst keeping everyone informed about what was what. What I should have done was go into the NHS, earn considerably more for doing considerably less safe in the knowledge I could blame everyone and everything else apart from me. DD
Have you got the despatches? No, I always walk like this. Eddie Braben
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Comments

  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
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    Twerps indeed,good job someone told you could have been a lot of confusion had they not.
    Still trying to get them to collect my now defunct sharps box.
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Dear me..its disgraceful ...not informing people that there meds are changing..you make sure they get a nice long email complaining about this DD..it might not work but will make you feel better..x
    Love
    Barbara
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    I agree with you DD, it was the hospital's job to notify you. HaH have a contract with the NHS to deliver the items they are told to; their contract is not with you. As far as I can see it's no different from online retailing where the delivery company's job is to deliver - not tell you the order has changed and a substitute is being sent - not least as that is not the delivery company's decision.
    At least you know enough about the drugs to understand that the new one will be in effect the same as the one it's replacing, but post-Brexit contingency measures could mean arbitrary changes to prescriptions made by pharmacists(not their choice or wish I hasten to add) without a GP's input, based on what they have available and their professional judgement as to what alternative is suitable. Bad enough if you are able and willing to engage with the problem, but what about all those who can't for whatever reason?
    And will the pharmacist have to tell you - I don't think they do at the moment with generic drugs anyway. When I was prescribed alendronic acid for osteoporosis it came from 3 different companies and 2 different pill formats even in the brief time I was taking it as the GP hadn't specified a particular one so I had whatever was in stock/had been bought at the best price.
  • Kitty
    Kitty Member Posts: 3,583
    edited 30. Nov -1, 00:00
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    I was prescribed Rituximab for my Vasculitis, I had a letter from the hospital to let me know my next infusion would be the biosimilar Truxima and several people I know including my DIL, were also told they were being changed to Truxima for RA. I suppose it depends on hospital policy.

    "Women and cats will do as they please, and men and dogs should relax and get used to the idea." Robert A Heinlein

  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Or, indeed, total lack of :roll:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Elmbow
    Elmbow Member Posts: 80
    edited 30. Nov -1, 00:00
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    It's rude. But take heart... studies tend to show Imraldi, unlike other biosimilars, is actually more effective than its bio-original.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Thank you, everyone, for your kind replies. I have no doubt that the rheumatology nurse was hoping to fob me off, and I am sure she has succeeded with others in a similar position. I am on three-monthly bloods at the moment but once I receive the imraldi I shall return to monthly. Bio-similar is not 'exactly the same' is it? I think the word 'similar' gives the game away.

    I heed your words, Elmbow but will, as usual, not expect improvement or side effects. I wait to be pleasantly surprised, and maybe this time around I will be, but the OA complicates matters. I guess it's all a case of mind over matter: I do mind but that doesn't matter. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Littlepea
    Littlepea Member Posts: 2
    edited 30. Nov -1, 00:00
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    Just want to here that the decision to switch to a biosimilar drug should be a joint decision between the consultant and patient according to NICE guidelines.

    I was told November 2017 that I would be switching to a biosimilar, I'm on enbrel. I did lots of research into the biosimilar drugs available for enbrel and I wasn't happy with what I found out. I also found out that the savings aren't really alot and I wasn't going to risk my health and well-being for a saving of just over £17 per week. I typed up all my thoughts and what I'd found out about the drugs and gave them to my specialist nurse at my next appointment, she passed them on to my consultant. I saw him last November and I can stay on enbrel.

    I just think the we should have a say in what we inject into our bodies every week. We have got opinions on it and have the right to be listened to. I had to stand up for myself, Enbrel took me straight into remission six years ago.

    I wish you well DD with your switch and hope you do really well on it. xx
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi littlepea,

    Welcome to the forum, how lovely of you to join to offer support to others in a similar condition to yourself. I’ve had occasion when my meds were altered, though not because of a 'generic' alternative. I wasn’t happy but put up with it.

    In fact without your input I would have assumed the premise that savings would be from tens or hundreds of pounds to pennies would be true, however if I get in that situation I shall check out the facts first.

    Do stay in touch on the forum, I’m sure you will be able to offer sage advice - and have a smile along the way

    Take care

    Yvonne x
  • Littlepea
    Littlepea Member Posts: 2
    edited 30. Nov -1, 00:00
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    This is the costings I found regarding enbrel.

    https://bnfc.nice.org.uk/medicinal-forms/etanercept.html
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Thank you, Littlepea, it's nice to meet you but at the same time I am sorry I have; arthritis is not fun, is it? My current mix of humira and methotrexate controls disease activity but has not stopped its progression or reduced pain levels, having OA too is an added nuisance. Years ago Enbrel tried to explode my liver, a holiday was rudely interrupted by being ordered to go for blood tests there and then, an appointment made at a local GPs and everything :lol: The upside was I learned the term 'deranged liver' which was most amusing. I felt fine, that was the oddest thing. This is why I will do more regular blood tests with the new gunk. A friend has been swapped and he's doing fine so hopefully I will too.

    When it comes to my GP prescribed meds I assume I always receive the cheapest or what's in stock, it was the reason I was not allowed Celebrex despite the hospital saying it was the one I should have. I've been taking meds since I was twelve, and very little about it all bothers me now, but the general decline in the NHS services that I need to occasionally access is upsetting. My GPs surgery has six doctors and now over thrity thousand patients. Rheumatology has four consultants, two nurses, one physio and an ever-increasing workload. Brexit or the lack of is also a contributing factor: we live in interesting times! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    HaH rang and delivery is sorted. Apparently my hospital have emailed HaH saying that the patient has been told officially via a letter that she is to be changed from humira to imraldi. The fact she hasn't is neither her not there: the lady from HaH was concerned that I had not received it so I said we should play a game of 'Let's Pretend the Lady has her Letter' which made her laugh. They aso confirmed that the delivery amounts I was told by the nurse when she rang were not the same as sent by the department. Knowing the nurse as I do I am not in the slightest surprised by this, she is economical with the truth as a matter of habit. I am writing to my rheumatology department to request more blood forms, I am returning myself to monthly bloods which I see as a sensible precaution.

    Mr DD has been looking things up, apparently humira cost the NHS £400 million per year and this switch will save £175 million. :shock: We never think of the overall figures, do we? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    II hope you get all the meds you need, and in good time to save any anxiety and more chasing up. I think it's a very sensible plan to increase your blood tests until you're sure there's no unwanted changes anywhere. I love the fact that you just get on with such things without whinging.

    Yes, we are all a big expense for the NHS and I am acutely aware of having cost it a lot in terms of meds, ops and hospital stays. All we can do is to try to make our reluctant bodies work for the common good so that it's not in vain.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I've never seen the point in shunting (I typed whinging but my machine didn't agree with such a poor choice of word): it changes nothing, bores those around you and gets you nowhere. I'm an adult, not a toddler or petulant teen. As those who are supposedly 'invested' in my care patently don't give a damn I'll sort it myself, at least I will know what has been said and done: medmin on a grand scale! :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I received my official letter from the hospital. It was a grotty photocooy, headed with the hospital's address, was addressed to Dear Sir/Madam (how personal) and - best of all - dated 13 September 2018. They have known for six months that this was going to happen but obviously felt it was not worth their time to let me know. Twerps. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Today I have done my second imraldi and I am not sure about things at all. Give me the OA every time: you know when it is going to hurt more, you know that you can make it hurt more by overdoing things, you know you can sort the localised inflammation by anti-inflams of any kind and rest: it's so damned straightforward. (Before the newly-diagnosed OA-ers begin growling at me I will remind everyone that I have a foot in both camps, OA in multiple joints so I know a little about it.)

    I have done the second imraldi this morning (an unpleasant one as I chose the locale of a very active nerve :lol: ) and then sat doing a Fagin (DD breaks into a passable imitation of Ron Moody)

    'I was reviewing . . . .
    My situation . . .
    And not liking all the stuff that I could find . . . . .

    In the last month I have not been any more active than usual but pain levels have risen (not OA ones, these are deeper and more widespread), I find myself longing for knee supports (so am exercising my leg muscles more because maybe they are being lazy) and I have dug the BBs out of retirement. I am not far off using sticks indoors for the first time in years and am considering doing some maintenance on Boudicca (my mobility scooter who is in the garage, covered in dust and spiders). I have had some bloods done, I won't hear any results unless something shows up but will chase them up for my own satisfaction, all in all DD is not happy with her lot (not that I am usually ecstatic about having arthritis but it is what it is and it is currently doing what it can do).

    With a diagnosis of an auto-immune inflammatory arthritis comes a complex scenario of trying to attribute cause and effect: as you know I am not a great navel-gazer and normally don't give a damn but on this occasion, because I have swapped meds, I am beginning to ponder if the two are linked. Is this deterioration part-and-parcel of arthritis? I am at the beginning of my 23rd year of PsA and it's never going to get better, just worse. I am at the beginning of my 9th year with OA, ditto, but this doesn't feel OA-ey so I can strike that off the list (see? Easy! :lol: ) As the side-effects leaflet warns of increased joint pain (yer wha'?) tiredness (you're 'avin' a bubble) and other day-to-day things one really has no idea what's what.

    I shall see how things progress over this course of imraldi. I have a fairly good idea of when to seek help and I don't think I need it at the moment, I know that there is no explanation but I am also aware that things are not as good (ye gods, how my standards of good have slipped over the years!) as they could be.

    'I have reviewed . . . .
    My situation . . . . '

    If you have been, thanks for reading. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Thank you for distilling your pain into a few smiles for the rest of us. It's always good to know we don't suffer alone :lol:

    I've no wisdom to offer. You know the score as well as any of us but, if the meds aint working, maybe, after a bit more imraldi, it will be worth going back to check the bloods. I know you felt the humira was nearing the end of its useful life so perhaps a tweak or two might be needed. Or, indeed, maybe the imraldi itself will provide the necessary tweak. We can always live in hope.

    Do what you have to do. Go to the garage and get out your duster - and then hand it to Mr DD :wink: Fish out the scooter and scoot along somewhere nice. Arthritis? Who needs it :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I'm a week further on and have consulted the side effects leaflet once more because I have a boil, my first for some time. I also have small patches of non-pustular psoriasis in places where I've never had it before. The GPs have requested I redo my latest bloods with a fasting test: raised sugar levels is another side effect.

    I think things are going wrong. :( I will ring my hospital helpline as they will be more informed than the surgery. Possibly. :roll: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    Oh my goodness DD, these things you do not want!! Hope you manage to get through to the Remy helpline, and maybe they deign to answer your carefully worded answer phone message (just going on personal experience here). Sounds like maybe you need some "reviewing" of this situation professionally as well as musically. It amused me to realise that I was singing along internally in a Ron Moody voice as I read your post. :lol:

    Hope things get sorted and you manage to return to the pre grotty status quo soon. In the meantime I fear Ron Moody impressions will lead to me singing random songs from Oliver for the next few hours, I'm sure hubby will thank you for that blessing :wink:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Well, dear readers, I burst last night :D but I am not out of the poisoned woods just yet as I feel it's gathering itself for another go. I shall ring the Helpline later but will have to make notes first so I can be precise and to the point.

    I'm peeved.

    dibdab, I've been dipping into the Arthritic's Book Club for reading material to while away the painful hours. They have a couple of Dickens there, fancy a borrow of David Copperheelers or Creak House? :lol: Reading is quieter than being Ron Moody. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I've done nothing. I am enfeebled. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    Oh my, DD I hope you can gather the energy to ring tomorrow-or ring your GP for antibiotics, it sounds like the pesky germs have taken hold and in your present state of unhappy ill health it's so difficult to fight them off.

    Reading would probably please hubby more than singing, I do sing lots, usually the current songs that we're learning at choir, so Oliver makes a change. I think Creak House just about describes my current state of play. We're just back from the garden centre where we both avoided having to cook lunch today :D hubby is now snoozing, as is the dog, and I'm whiling away time trying to summon the energy or the motivation to do something purposeful-the many pain meds for my dratted back have so fuddled my brain I suspect I'll either join the snooze fest or do some crochet.

    Here's hoping tomorrow brings something more positive for you. t69044
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    ((( )))

    Books? I enjoy a browse through:

    50 Shades of Omeprazole
    Withering Joints
    Gulliver's Travails
    War and Pieces
    Les Tres Miserables
    100 Years of Sulfasalazine
    No Crime and Lots of Punishment
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Thank you dibdab and I like it Sticky, keep 'em coming!

    I rang my Helpline and, much to my surprise, they rang back. :shock: I am pleased they did, however, as I now have an appointment on Monday, with my Consultant :shock: :shock: thanks to someone cancelling :D .

    I am currently reading Price and Prednisolone and Mr. DD has lent me his copy of Vile Bodies. :wink:

    I am increasingly enfeebled. :( DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    I'm sorry you are enfeebled but pleased you have an appointment. Good on you, whoever you are, that cancelled early and so made this possible.

    I rather like Vile Bodies. On the similar basis of 'no change needed' O offer:
    Bury My Heart at Wounded Knee
    By Grand Central Station I Sat Down and Wept
    Bonjour Tristesse
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright