Humira

[Frank85]

I have had 2 doses of Humira to deal with lowering my NK cells..... I will then be retested in two weeks to see if they have come down
Problem is I will get the results the day my period is due / start my first IVF cycle
If they havent come down it might be a wasted cycle..... But quite likely they will

Has anyone else had experience with theirs not coming down after 2 doses?

Thank in advance!!

[CurlySue7]

Hi keen to see how you got on! I’m about to start humira :)

[Janefx40]

Hi @CurlySue7 I took Humira and it worked for me. Re-test showed levels in range. I'm now 10 weeks pregnant. You can never know what helped or didn't but it certainly didn't hurt. Also on prednisolone and intralipids plus various blood thinners etc

[Annie808]

Hi @CurlySue7 @Janefx40 hope you don't mind me asking, did you have any side effects to taking the Humira? And @Janefx40 did you take it before TTC?
I have been prescribed x2 injections of it, due to slightly high TNF Cytokine cells and because I have two miscarriages. I am slightly scared to take it though after reading the side effects and worried about having a lowered immune system!

[Janefx40]

Hi @Annie808 I didn't have any side effects of Humira at all. The way I see it, our immune systems are over active so all this is doing is putting them at a normal level anyway. Go for it and good luck x

[CurlySue7]

Hey!

@Janefx40 I’m so sorry I didn’t see your response until today. Congratulations :)


@Annie808 I haven’t started yet. My plan is to order this weekend.

I’ve had one failed cycle of IVF so decided to do an immune test and learnt that my NKCs were also high (around 39). 2 doses of Humira has been recommended to reduce the levels and hopefully enable me to start again!

I too was worried about missing cycles/ opportunity but if we’re realistic.. the chances of us getting pregnant without reducing our levels is low(er) so try to think of it as a positive


i have also waited to ensure my dates don’t mean I’m going to the clinic around Xmas (mine is quite full on!) I don’t know whether I’d be able to take the time off work and whether the clinic would be fully open.


I do plan on trying to stay home/ isolated while taking the injections as hopefully that will help! It’s not the best time of year I guess to be reducing your immunity…


I’ve done some reading on the actual injection process as at that price I don’t want to waste it! Any advice or could you confirm if it’s like any other injections you’ve had?

keep me updated, it would be great to hear how you get on!

Best of luck

[Annie808]

@Janefx40 thanks, yes hadn’t thought about it like that. Going to give it a go, at least the first dose anyway!

@CurlySue7 ah it would be great to keep updated on how it’s going with you!
So going to take my first shot of Humira tonight, really hope I feel ok as I have lots of weekend plans! I also have never injected myself before, so will be on YouTube and asking hubby to help 😬
Totally get what you mean about not wanting appointments to clash with Christmas time.

My situo is slightly different, I’m not doing ivf but got diagnosed with slightly high Nk cells and TNF alpha cells due to seeing a Consultant after 2 miscarriages and 1 chemical (all between April - Sep).
Quite nervous of starting on so much medication, but hoping it al helps!!x

[CurlySue7]

Im sure it will all be fine… when I did ivf this summer it was the first time I injected… it’s not as bad as it seems. Best to get someone else to do the more awkward places but I think this one is just in your stomach so should be fine.

if it hurts after… I found ice and a lie down helped :) but that was rare and probably more from injecting in same place daily!

[Janefx40]

@Annie808 @CurlySue7 I can't really remember much about the injection - sorry I am useless for forgetting stuff as soon as it is done. I think I was nervous because it was so pricey but I'm very used to doing injections by this point.

@Annie808 hope it went well if you've done it.

The only injection that I ever took that I felt was really nasty stuff was Human Growth Hormone. It didn't hurt but I would get tingly arms for a couple of days. That stuff was nasty.

Many people take Humira on an ongoing basis so the side effects listed mostly relate to those people. We're only taking 2 doses.

I was skeptical about immune treatment for years but looking back if I'd just done the treatment to start with, I might have avoided years of heartache and treatment. So personally I am now all in.

Plus in January I miscarried a euploid embryo. I'm now 12 weeks pregnant having done Humira and taken pred and various other meds. So personally I'm all in x

[CurlySue7]

That’s really comforting to know… after a failed cycle it’s hard sometimes to get back on the saddle and not think the worst!

@Annie808 how you getting on? Hopefully it’s a thin needle!

[Annie808]

@CurlySue7 thanks for checking in! yes so far all ok! Got my hubby to help me, didn’t really feel it in the stomach, just a v slightly sting. If I continue to feel fine, I will have the second shot in 10 days.

@Janefx40 amazing to read you’re now 12 weeks! Hope it all continues to go well for you!

[CurlySue7]

Glad to hear it… I’ve ordered mine over the weekend but no update on delivery dates. Hopefully be early this week

[CurlySue7]

Hi @Annie808 hope you’re keeping well

ive just had a call to say my injections are arriving tomorrow morning - starting to get really nervous! Do you recall how big/ thick the needle actually is?

im worried that I will jump when I click! Lol

[CurlySue7]

Hey,

just wondered how you ladies were getting on with side effects, etc?
im due my 2nd jab on Friday…. So far so good but not sure if that means it’s working or not!

[Annie808]

@CurlySue7 sorry I didn’t seem to get a notification for your msg on the 17th!
sounds like you managed ok though with the needle?
I did my first jab in the stomach and second in the thigh, no side effects with either, just assuming it’s working ok!
Will you have your TNF-a retested after? My clinic have said they won’t retest mine, as they were not that high, so they tend to assume they will come down. I hope they have!

[CurlySue7]

No problem! Glad to hear you’re keeping well.

yes my clinic does do a re-test- I think it’s around 3 weeks after my 2nd shot. I will be ringing today to confirm. my level was 39.9 so I assume that was high as the top of range was 30… I think they re-test everyone though before they start IVF again

🤞🏽

[CurlySue7]

I’m not sure whether to try naturally for a little while or just get back on the saddle… it’s so expensive but at the same time I think time worn stand still!

[Annie808]

@CurlySue7 will be interested to hear what your levels are after the re-test. Mine were 33.5 originally, I’m not doing ivf so that might be why I’m not retested, my clinic have told me to carry on trying naturally as I wasn’t struggling to conceive previously, but was struggling to hold onto them! But part of me wonders whether I should do IVF to bank some embryos - hard to know what’s best!

But to encourage you, a friend of mine had a miscarriage on an IVF cycle and then whilst waiting to starting ivf again conceived naturally and she just had her baby boy!

[CurlySue7]

Awww that’s lovely news! I’m hearing about so many little boys :)

2nd jab today for me….

it’s hard to know what’s best as you just don’t know what the outcomes will be… so many individual variations, it really is just luck.

my husband and I had nothing identified as wrong/ high on face value and are also both around 35. We therefore felt it was best to go for a more intense clinic who tested deeper. Naively we both thought given our stats, first cycle would likely be successful… just goes to show, it just isn’t that easy for some. I’m debating about when to retry also as naturally would 100% put us in a better financial position… however I need to also figure out work commitments as our clinic needs us in daily. Then I also keep thinking if I don’t fall pregnant naturally am I just wasting time… guess my results will help direct

we just haven to pray that our times will come!

[Annie808]

@CurlySue7 how did your second jab go?
Yeh it's so hard to decide what to try, especially when we have our biological clocks ticking away too! I just turned 34, and suddenly feel so much more pressured about it all. In my head I know we still have more years to try, but it does feel hard when your planned timeline goes completely out of the window!
Are you doing your IVF with ARGC?

[CurlySue7]

I am indeed… I’m quite annoyed though. They didn’t properly tell me that the bloods team I need for the Humira tests are closed till 3rd jan.

It is highly likely that I won’t be able to start my 2nd round till feb. My period is due around 7th jan so may not be enough time to review and direct!

they have been amazing otherwise… really go the extra mile to make you feel comfortable whilst trying to get to everyone

have you used them?

[Annie808]

Oh that's a shame about the bloods team, but maybe that's a sign you should try naturally before Feb!

I'm not trying IVF at the mo, but I would probably go with them if I do in the future, as I know they specialise in immunes and have a higher success rate than others. My private consultant who specialise in immunes for natural pregnancies worked with Dr.T at ARGC before, so think their approach is similar!

[CurlySue7]

yes I’m trying to see it as a sign… I struggle to get time off work so feb is not a great month for me but let’s see! We have to keep positive

I meant to say the 2nd shot went well. No real side affects. Though I’m starting to feel the cold.

what I have noticed post ivf is that my periods are pretty painless but 2nd day is very heavy… getting the most absorbent pads but still changing like 6 times a day! I’m not complaining though… I’ll take it over cramps any day of the week!

[CurlySue7]

Hey Ladies, thought I’d see how you’re getting on? I just found out that my 2 Humira shots have not really made a difference- latest blood test showed they dropped by 1 overall.

now need to go on a lipid IV drip this week to see if that helps lower them. After that it might be a case of another round of shots.

either way my journey’s being extended… drip followed by 3 weeks wait till next test!

[Annie808]

Hi @CurlySue7 sorry to see the Humira shots didn't make much difference :/ and your journey has been extended. Hope the IV drip is ok!

I have no idea if mine have changed or not, as they haven't retested. Didn't conceive month just passed, so trying again this month!
I have read that naturally you can help bring down TNF alpha by doing exercise, taking an Omega 3 supplement, and by drinking tomato juice! So I've been drinking daily t.juice, not really my cup of tea but anything to see if it helps and trying to go the gym for light cardio every few days plus Omega!

[Janefx40]

@CurlySue7 it's actually quite common (according to various forums I'm on) for Humira to raise cytokines and for them to then come down after intralipids so hope this happens for you x