Step one to starting my 1st Biologic in a month is done.

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  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Hi all,

    I FINALLY got a fone call on Friday to say wen I'm getting my 1st biologic injection ... Yep, I should have already had it!!

    It's 1st April. Both my Consultant & the Nurse Specialist are away for the next 2 weeks ( :roll: ) & aren't available together until then!! They both have to be there for the first one as my Dermo is doing the latex scratch test & checking a few moles that are a bit odd looking, the Ustekinumab can raise ure cancer risk. The Nurse does the injection & stays for the hour or so to see if I have any reactions to the med or the latex!!

    I'm very hopeful that this stuff will at least control my Psoriasis .... It's causing me such distress :oops:

    Xx xX
    Healing Hugs
    Debbie.x
  • toady
    toady Member Posts: 2,181
    edited 30. Nov -1, 00:00
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    First of April, oh ha very ha :roll: this has been dragged out hasn't it, do hope it will help you now things are finally 'go', and you will get some relief from the psoriasis. :) Best of luck with the checks & monitoring, hope all goes swimmingly for you.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I am pleased that you finally have a date for it - I`'ve read back thro your thread but I didn't spot the name of the drug: I`m on my Kindle Fire & it's unfamiliar! Which one is it? I know the sulph has been helping my skin & the humira too. I sincerely hope you soon gain some relief - rubbish skin is not fun. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Thank you both.

    Yes Toady they've certainly dragged it out to my skin & tempers detriment!! :?

    DD it's Ustekinumab or Stelara. It's specifically for PsA & Psoriasis.xxx
    Healing Hugs
    Debbie.x
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Best wishes, Debbie. I hope it works for you. Here are my fingers crossed, XX.

    I'm supposed to start mine in early May but I don't know which one yet. I hope it doesn't get drawn out like yours :roll: It's weird what our lives revolve around :?

    ((()))
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Thanks Anna :D

    Oohh, I wonder which one ul get!?! I so hope it'll help you, uve struggled so much!!

    I'm over the moon to report that my mri show NO arthritis at all in my lower spine, I couldn't be happier about that news!!! I have got active PsA in my si joints, let's face it it would've been more of a surprise if I didn't have it there :lol: I'm genuinely chuffed to bits & couldn't stop grinning wen I was told :D

    I'll see him again in 4 months so I'll have had at least 2 Ustekinumab injections. It's odd as with Ustekinumab u get ure 1st injection then 2nd 4 weeks later & then they're every 12 weeks after that ... It seems I'll be geting off very lightly compared to many!!

    I do think my arthritis (PsA) is much kinder than it is to many of you. I have no visible deformities & I never seem to show outward swelling, it's all internal.
    I actually feel a bit of a fraud being in the forum at the moment, my pain is reasonably low, including my fm too!! My biggest problem all round right now is my skin & there are other places for that ..... :(


    ((((Hugs))))

    Xxx xxX
    Healing Hugs
    Debbie.x
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Every 12 weeks? That sounds pleasant :D I'm going to ask for that one!

    I really hope it works. I sure don't think you've gotten off lightly, Debbie. Your skin sounds terribly painful, let alone having arthritis and fibro....

    It's all so individual anyway, I'm not sure it's even fair to compare us one to another? Could be a topic for another thread...

    Take care of yourself, you!
  • toady
    toady Member Posts: 2,181
    edited 30. Nov -1, 00:00
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    Hoping things went as planned yesterday (assuming appt stood as arranged) :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Toady beat me to it! :) Did it happen or not, and if so how was it? I've never heard of that particular flavour of biologic but I hope it proves to be the one for you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Oops, sorry for not posting :oops:

    Yes I had it :D I feel all tough & brave now ... Not!! :lol: I felt like a right Pillock!! :roll: :oops:

    I took delivery of the injection on Monday, bit of an anticlimax after being told it'll be in a Styrofoam box n to buy a cool bag etc It was just in normal packaging like any med would come in. Nothing special or sparkly to donote it as miraculous :wink::lol:

    Tuesday was a lovely sunny day, the appointment was at 11.30, arrived on time, I'm not an Army brat for nothing ya know :D
    They had decided even tho the blood test showed no allergy to latex they'd adminster it with me lead on a bed just to be on the safe side. They'd warned me this was likely so I didn't mind. As I hope to be allowed to self inject eventually, I asked for it to go in my thigh as that's where I'd do it. The spring in the injection was broke but it caused me no pain at all.

    I was to stay for 30 mins & have periodic checks of my BP. The room was very hot so they planned on moving us, that was put in motion. My last 2 weeks worth of Ciclosporin was being prescribed then I was wheeled to the cooler room & as I got onto the bed my vision started to come & go at the periphery, then my head felt a bit dizzy, almost as if I'd hyperventelated. I told the auxiliary nurse who told the nurse specialist, she came to speak to me & ask questions n my lips started tingling so I told them & then my speach started slurring!!! :shock:

    I was lead there slurring saying 'It's ok, I'm not allergic, don't stop the meds please!' I knew it wasnt latex as the injection site 100% fine n I was so worried they were going to say I allergic to the Ustekinumab!! A Matron, a couple more nurses & a consultant came in & by this time I couldn't speak, my speach was too slurred to understand!! I was pretty calm but apparently I had no colour & my BP had shot thru the roof quite early on, around the time my lips started to tingle I think, it continued to climb. Well while I was lead there feeling like a complete numpty, I had numbness go down my left arm & I had a 'Ah Ha' moment!!
    I'd been nervous all morning, any sane person would be I think, it isn't normal putting such stuff into ure body :lol: So I thought maybe it was a complex migraine I was having but without the pain!! The symptoms fit ... They said that the tingling around the mouth could be from the Ustekinumab but the rest could be migraine. It all eventually settled down & I was able to go home HURRAH :D

    I did get a migraine later in the day but I slept 12 hours straight that night. I've had bad fatigue for these couple of days since but that's about all. No reaction at all at the injection site. All is well that ends well.

    They'll be watching me very closely on 1st May as they said the 2nd injection often has the biggest reaction. So we'll know if it was migraine brought on by my nerves this times, or if it was the meds ... I have no concerns at all going into the next one, even if I do react I'm in a hospital after all :wink:

    They do have to tell the manufacturer wot happened to me ... I hope I don't end up adding yet more 'possible side effects' to A biologic!! :oops:

    Thank you for asking & sorry for my waffle.

    Xxx xxX
    Healing Hugs
    Debbie.x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hmmmm. Not a wonderful start to be sure but at least you were in the right place. I am not surprised that you might have 'brought on' a migraine and you have confirmed what I knew all along - I'm not sane. :mrgreen: After years of docs and meds I don't bother about anything which is being injected or swallowed, I always blithely assume that all will be well and - luckily - it usually is. The mind is a powerful thing, yes? One thing has struck me - surely you will need to find a psoriasis-free zone to inject - I hope you have some.

    I inject meth in my thigh sitting on the bed with my legs stretched out - this relaxes the muscles. I also inject humira in my stomach - it's broad :wink: and has fewer nerve endings. My humira is currently warming through on the side. Deep joy.

    I hope you soon feel some benefit and I wish you well with the second dose - please let us know how you get on, yes? Well done to DebbieT! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    :lol: I had a feeling you'd had no such nerves :wink:

    The skin is currently quite flat, thank you ciclosporin, & you can squeeze a needle between the plaques on the top side of my upper thighs, the underside would be a different story :shock:

    That's how I was sat for the injection, I have rather strong thigh muscles, despite my inability to walk far or for very long, so it's a very conscious effort to relax them. I clearly succeeded tho as I have no bruising, tenderness etc at the site of the injection, I managed to get that right at least!! :lol:

    I ruled out my stomach as I have an awful lot of stretch marks, the skin is very thin :? Yuk, sorry for the imagery. Perils of 4 births & non-elastic skin :shock: :roll: Also fm makes my thinner skin very sensitive!!

    I hope ure feeling well DD, as well as you can at least?

    Yes I'll let you know how next months goes ... I'm hoping it was a self induced migraine coz if not I don't know if they'll allow me to do them at home :? Positive thinking tho :D

    Take care.

    Xxx xxX
    Healing Hugs
    Debbie.x
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
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    Keeping fingers crossed for you Debbie it wasn't a reaction to the injection lets hope the next one goes better and you start getting some relief soon (((())))...............Marie xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
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    Relieved to learn you came out of that first experience intact at least and I really hope it works wonders for you Debbie. Mat x
    If you get lemons, make lemonade
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Thank you both. I'll post & let you know how it went after the next one.

    Xx xX
    Healing Hugs
    Debbie.x
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi Debbie that sound so blinking scary .. :shock: not nice when they say the second one can be worse..think they should keep these things to themselves... :o:) right we need the bus then for the 1st..mind you that is my rheumy date..only had one 4 years ago... :roll: but I am sure I can make it...depend on the goodies on offer..good luck with it all I really do wish you well xx
    Love
    Barbara
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Migraine trigger? I really hope not Debbie. Although I can relate, mine seem to be triggered by insignificant things so why not by a major drug infusion? Hopefully you will get used to it (?)

    Wishing you well for the next one and fingers crossed this drug will work on skin, joints, tendons and fibro :D ((()))
  • toady
    toady Member Posts: 2,181
    edited 30. Nov -1, 00:00
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    Well done for getting through the scary thing with that much positivity and still the ability to :lol: don't know how you do it frankly but I admire you for it no end!! Will be hoping for the best for you on the 1st and will be checking in, really well done for getting it under your belt :) toady xx
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