* Author Topic: Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)  (Read 191375 times)

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Offline Tama

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Re: Humira Experiences ~ Part 2
« Reply #100 on: 17/02/11, 22:04 »
Evening ladies,

I got my humira from Healthcare at Home it was 745 for two injections. Think it's a little more if you pay on a credit card.

Hope everyone is okay  :) xx

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    Offline jo_11

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    Re: Humira Experiences ~ Part 2
    « Reply #101 on: 17/02/11, 22:08 »
    Starfish:  I suspect the compliments about my complexion are more to do with no alcohol and the water detox I did at the start of the  year!  I re-test on/about 4 March. 
     
    My humira was 822.25 from Central Homecare... I couldn't get through to HaH; tried for a couple of days ('phone and email) then decided it would be worth it to go with CH to save time.  Didn't realise Dr G would fax it straight through  ^idiot^   Ah well, you live and learn.

    Offline morrigan

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    Re: Humira Experiences ~ Part 2
    « Reply #102 on: 17/02/11, 23:12 »
    Just to let you know what Dr G said about my levels of 30.00 he said it wasn't too bad but would like it below 25 but when I said I didn't want to take the Humira again he did an intralipid drip now and one day 7-10 of stimming then I wouldn't need one until I got  BFP. He also said he won't retest levels again even if I get a BFP as he switches to measuring nk's only once you are pregnant. He mentioned IVIG and then just laughed when he saw my face and said ok intralipids it is then !

    Offline Tama

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    Re: Humira Experiences ~ Part 2
    « Reply #103 on: 18/02/11, 08:56 »
    Morrigan, think my face was  :o when he said about IVIg  ;D I will just be having the ILs. I have read so much about it and a lot of doctors that are using it think it is the new way forward and that IVIg is a little out of date. I think it depends on the doctor and the levels. Glad you don't have to take more Humira - I won't be taking more either. Have you anything nice planned for the weekend? xx

    How is everyone else? xx

    Offline Springflower

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    Re: Humira Experiences ~ Part 2
    « Reply #104 on: 18/02/11, 12:35 »
    Lovely ladies, thank you very much for all the pricing info.  You know I never knew Superdrug, had a pharamacy!!  There's one two mins away from where I live - haha!  So I've gone with them at 715.00.  You've gotta save the pennies where you can!

    Hope everyone has a lovely weekend!

    Spirng
    xxx

    Offline agate

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    Re: Humira Experiences ~ Part 2
    « Reply #105 on: 18/02/11, 13:51 »
    spring: suggest you check with superdrug whether you need to bring a coolbag and ice when you collect the H?  [email protected] supply it in a coolbox but other pharmacies might not?  it is vital to keep the stuff refridgerated otherwise it becomes useless.

    Offline Bluebell14

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    Re: Humira Experiences ~ Part 2
    « Reply #106 on: 19/02/11, 20:23 »
    Hi Ladies,

    Can i ask your advice i have been prescribed Humira for High Uterine NK cells by Dr Gorgy my TNK alpha is 28 so in range although he said this was borderline, i intend on having LIT for negative LAD and intralipids steroids etc for high NKa30%. I have read about lots of ladies having Humira flares and there TNF increasing in numbers. My question is do i really need it as i am having steroids/intralipids to lower NK any way will it be effective enough to reduce Uterine NK i wouldnt want it to raise my TNF when it was ok in the 1st place!!!

    Any thoughts? Thanks in advance

    Zoe
    xx

    Offline MissyMinx

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    Re: Humira Experiences ~ Part 2
    « Reply #107 on: 19/02/11, 21:03 »
    Hi Ladies,
     
    I'm about 4 weeks post taking Humira, I actually had one lot of LIT tx last year and was thrilled to find that it helped make a massive improvement to my eczema, which has plagued me for years.  I've hardly had any problems since, but annoyingly last week, my eczema came back with an absolute vengance - I barely know what to do with myself.  I've been given a week of Prednisolone and I'm using some heavy duty steroid cream that my Dermatologist prescribed for me, but the eczema is widespread over my whole torso, so it's I'm not allowed to use masses of topical steroids because of the risk of absorbtion apparently.
     
    I'm thinking that I've obviously had a post Humira TNFAlpha flare (I think my levels were in the high 40's to start with), and I wondered if any of you knew how long I can expect this flare to last?  We're not planning on txing yet - I was hoping that by taking Humira early we might have some chance of improvement in my egg quality, which isn't brilliant :( .  We are booked in to have 2 lots of LIT in March and April before we even think of txing around May I hope, so having Intralipids isn't something we need to think about for now.  I'm in flippin agony with this eczema though, and I was hoping that anyone with any experience may be able to tell me how long I can maybe expect this to go on for.  All advice would be gratefully received ^eyes^ ^eyes^   ^hugme^ ^hugme^
     
    Zoe, truthfully - not that I would ever advise you to go against what Dr G has told you, but my personal choice - if I had your results and tx plan would be to leave the Humira.  That is definitely merely my personal opinion, but I understand that Humira is quite a hardcore treatment, and if I wasn't sure I needed it, then I would probably lean away from having it.  However, it would also depend on whether (heaven forbid) you end up with a BFN, would you look back on your tx and always wonder perhaps if you'd only thrown the Humira into the mix...  Sorry for such a completely useless answer, I suppose that if you were to have a TNFAlpha flare after the Humira then the Intralipids would bring this down.  It's so difficult, and I've offered you no help at all - apologies. xx
     
    I hope all you Humira ladies are ok. Sending  ^hugme^  to all.
     
    Em.x

    Offline morrigan

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    Re: Humira Experiences ~ Part 2
    « Reply #108 on: 19/02/11, 21:30 »
    missyminx - sounds rough I hope it improves soon.

    Zoeella- its got to be your choice as you always risk a flare but are uterine nk cd57+ ones- are they hard to treat I am wandering if thats why Dr G is throwing everything at it. I declined a second Humira dose when mine came down to 30.00 (from 38.4) and have had intralipids before my cycle as well as in it instead but I dont think I have ever had uterine nks meaured. I had heard that other immune doctors use 30.00 as cut off and Dr G likes 25.  I am however on my first IVF cycle so I would be very tempted to throw everything at it for future cycles.

    Offline agate

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    Re: Humira Experiences ~ Part 2
    « Reply #109 on: 20/02/11, 13:56 »
    zoeella: its tricky because most docs only use humira for TNFa - but beer recommended it for CD57+ uterine NKs as well - his theory being that humira was a more powerful drug to use against them than drugs like steroids (TNFa is part of the signalling system that NK cells use - so in theory, if you meddle with TNFa, you should reduce the aggression of CD57+ cells as well (the same goes for blood NK cells - as measured on the 50:1, which are mainly only looked at for fertility as a clue to what your CD57+ in your uterus might be up to).

    According to Beer, steroids will help some ladies as they should be enough to suppress uNKs but it won't work for everyone - what he called his 'olympic team' ladies (i.e., ladies with really fierce NKs) - so he preferred to give humira to try to suppress them aggressively.  His alternative treatment for ladies who didn't want/couldn't have humira/humira didn't work for, was ivig - but humira is cheaper, and persists longer in the body.  We have intralipids now, and some clinics say that they are seeing that ILs works just as well as humira and/or ivig - but some docs don't feel we have used them for long enough to know whether ILs is enough on its own without humira/ivig for ALL ladies - or whether they only work for ladies whose immunes aren't that aggressive - the 'non-olympic team' ladies.

    So I guess, if you know you have high CD57+, your options are:

    1) stick with the 'traditional' approach of using humira and then steroids/clexane and then adding in ivig/ils if you need more suppression

    2) go for the 'newer' approach of using steroids/clexane and intralipids

    3) go for the 'immunes lite' approach of using only steroids/clexane

    my guess is that option 3 will work for a lot of ladies, and option 2 will probably work for most ladies, but there will be a group who have really angry immunes - probably those who have a DQa combined with a high NKa/uNK and/or those who have fierce autoimmune problems e.g., crohn's disease, RA, possibly endometriosis, etc...  my hunch is that Dr G will prefer to assume ladies are in group 3 and treat everyone with a fairly heavy handed approach to try to give all his ladies the best chance of pg every time... but I think its up to you which way you prefer to go?


    Missyminx: nothing really helpful I can think of... except (and I realise this is teaching granny to suck eggs - sorry)... but is there really no diet/environmental allergy you can pin down that is triggering your eczema?   I know the commonest triggers are dairy, wheat, eggs, nuts - but there are other common ones like all the nightshade family plants (tomatoes, peppers, potatoes etc)... just thinking of what happened to BBs ankle after she had such a tiny bit of stuff with dairy in it.  I guess it would be a huge hassle, but maybe a rigorous exclusion diet to try to pin down an allergen?  and nothing so obvious as bio-washing powder or something?