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  • "Miraclebaby" started this thread

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Monday, June 25th 2012, 3:08pm

Humira Flare

Ladies,

I've been reading search results posts on humira flares and I still need some reassurance/advice. Dr Beer's book (page 154) doesn't say much other than to say that you can still have success with humira flare so long as IVIg is administered. It doesn't answer the crucial question of whether success after a flare, is dependent on the levels coming down.

I appreciate that it is best to speak to Dr Gorgy about all of this, and I've made an appointment to see him. I'm also happy to go with whatever he recommends but I want to be armed with as much information as possible before I see him later this week.

I got my TH1: TH2 retest and seems to be a massive flare after 2 humira injections:

TNFa 31.4 before humira, now 43.1 (limits 13.2 - 30.6)

IFN 13.3 before humira, now 25.1 (limits 5.8 - 20.5)

I understand that humira flare may come down on its own or be brought down by intralipids and IVIg, I don't really understand why we take it in the first place if it can cause such a flare. I also understand that the flare may be the humira drawing the TNF away from the uterus into the blood stream, but as no one measures the former, this kind of sounds to me like just theory.

Questions:

Has anyone had such dramatic increases and gone on to get pregnant? If so, did you have to take IVIg or/and intralipids or did it come down on its own?

Given this high flare, would you take humira again, if recommended or just go straight to IVIg and/or intralipids?

Given the cost of IVIg, has anyone taken only intralipids and had success bringing down levels?

I'm due to go on the pill at next period, (in a week or less), and then start buserelin injections 3 weeks later. Given these figures, is it better to delay the cycle until the TH1:TH2 is sorted or can you start a cycle with high levels and still have a chance of success? My main immune problems are these and LAD negative for which I've had two LIT treatment and will be retesting in July.

Any thoughts, very gratefully received.

Many thanks.

MB xx

TTC 9.5 yrs; Me: 40, PCOS? DH: 43, MF
1-4 ICSI: BFN
5 IMSI Immune Dr Gorgy: A/biotics, DHEA, Humira, Intralipid, LIT, endoscratch, IVIg, clexane, steroids, prontogest, neupogen. bio BFP
6 PICSI Dr G BFN
7 FET Dr G 8/13: failed BFP
8 PICSI 2014?

The end of this journey shall justify the pains. We must win this fight
.

Diary

Maria72

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Monday, June 25th 2012, 3:52pm

I'll try to answer the best I can.


I understand that humira flare may come down on its own or be brought down by intralipids and IVIg, I don't really understand why we take it in the first place if it can cause such a flare. I also understand that the flare may be the humira drawing the TNF away from the uterus into the blood stream, but as no one measures the former, this kind of sounds to me like just theory.

That's just it, it is just theory. Mine went down straight away after the first month, so I think it depends. Sometimes it works, sometimes it doesn't


Has anyone had such dramatic increases and gone on to get pregnant? If so, did you have to take IVIg or/and intralipids or did it come down on its own?

I didn't have the flare, but a lot of ladies at the argc have. They then had to take the IVIg. As the humira is only effective in theory sometimes it doesn't work. It is not recommended that you take more than 4 humira injections, unless you actually have rheumatoid arthritis. SO if you have only taken 2 jabs ( one month) you may take a further 2, if not then you'll have to take IVIgs or intralipids.

Given this high flare, would you take humira again, if recommended or just go straight to IVIg and/or intralipids?

As the levels are high, I would not take it again but would go straight to intralipids, which are actually cheaper than humira. IVIGs are more expensive, but more effective.

Given the cost of IVIg, has anyone taken only intralipids and had success bringing down levels?

I don't know about this one. Chatterbox only took the intralipids and it worked! Amazing Grace didn't take anything at all and it worked all the same.

I'm due to go on the pill at next period, (in a week or less), and then start buserelin injections 3 weeks later. Given these figures, is it better to delay the cycle until the TH1:TH2 is sorted or can you start a cycle with high levels and still have a chance of success? My main immune problems are these and LAD negative for which I've had two LIT treatment and will be retesting in July.

I would have the treatment and then the intralipids or IVIGs if you need to have them. As I said they are more effective and you've had the LIT.

Hope this helps x

  • "Miraclebaby" started this thread

Posts: 1,728

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Monday, June 25th 2012, 4:32pm

Maria,

Thank you soooooooo much for taking out so much time to answer my questions so thoroughly. You really a star and a gem!

Much gratitude.

Lots of love and regards,

MB xx

TTC 9.5 yrs; Me: 40, PCOS? DH: 43, MF
1-4 ICSI: BFN
5 IMSI Immune Dr Gorgy: A/biotics, DHEA, Humira, Intralipid, LIT, endoscratch, IVIg, clexane, steroids, prontogest, neupogen. bio BFP
6 PICSI Dr G BFN
7 FET Dr G 8/13: failed BFP
8 PICSI 2014?

The end of this journey shall justify the pains. We must win this fight
.

Diary

Maria72

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Monday, June 25th 2012, 4:40pm

You're welcome hunni! Good luck!

  • "Miraclebaby" started this thread

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Monday, June 25th 2012, 4:54pm

Thank you. xx

TTC 9.5 yrs; Me: 40, PCOS? DH: 43, MF
1-4 ICSI: BFN
5 IMSI Immune Dr Gorgy: A/biotics, DHEA, Humira, Intralipid, LIT, endoscratch, IVIg, clexane, steroids, prontogest, neupogen. bio BFP
6 PICSI Dr G BFN
7 FET Dr G 8/13: failed BFP
8 PICSI 2014?

The end of this journey shall justify the pains. We must win this fight
.

Diary

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Tuesday, June 26th 2012, 9:45pm

Hi miracle baby

I feel a bit silly for not knowing about a 'flare' since I guess I had one... All I knew was that after one lot of humira (ie. 2 injections) my levels went up instead of down. The Argo said that often happens and I'd need another course, which I duly did. My levels still went up, so they said that obviously that wasn't my problem since the humira didn't fix it (simplistically speaking). I went on to have a fresh cycle right after that, including ivig, and got pregnant, so it obviously didnt affect things. I had about 4-5 ivig infusions in total and all is going well still at 33 weeks :)

I wouldn't have humira again, there's no point since it didn't work, and I'm not sure you're allowed to anyway, I think 4 injections is the max. But as for intralipids vs Irving, I was told it depends on which cells are raised which one you get. At Argo they do both, but I needed ivig as I had raised CD19. I must be honest, after reading Dr Beer's book and deciding on immune treatment, I didn't read it again, as I decided to trust the clinic without stressing about each result.

But I think it's a positive message from my side, no reason you should get pregnant!!

Good luck

Xxx


Me 35, DH 37 [zx151]
2 x ICSI :BFN:
1 x FET :BFN:
Nov 11 - 3rd ICSI (Immunology Cycle) :BFP: Please stay with us :pray:





Jewels' Journey - My Diary

  • "Miraclebaby" started this thread

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Wednesday, June 27th 2012, 6:26pm

Hi Jewels,

Thank you so much for your email and kind words!

I'm thrilled that all is going well with you, wishing you the very best of luck honey. 33 weeks already!!

All very inspiring and gives me hope. Interesting that you've had 4/5 IVIG. DH and I figured that humira not working means an additional budget of about £10K alone on IVIg needs to be added to our already scary costs and it sounds like those figures are realistic. Goodness. Anyway, just praying that it works!

I think it's such a good idea going with the flow and trusting whatever the clinic says instead of analysing every result beforehand as I've done. Having said that, it meant that I was prepared for the consultations without surprises. The Beer book and all sorts of fertility books are all by my bedside. Might be time to ditch the obsession!! I just need to sort my head and relax about all of this - easier said than done!

My turn to learn something new - what clinic is Argo?

Thanks again for the response honey, and take good care.

xxx

TTC 9.5 yrs; Me: 40, PCOS? DH: 43, MF
1-4 ICSI: BFN
5 IMSI Immune Dr Gorgy: A/biotics, DHEA, Humira, Intralipid, LIT, endoscratch, IVIg, clexane, steroids, prontogest, neupogen. bio BFP
6 PICSI Dr G BFN
7 FET Dr G 8/13: failed BFP
8 PICSI 2014?

The end of this journey shall justify the pains. We must win this fight
.

Diary

Maria72

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Posts: 13,735

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Wednesday, June 27th 2012, 8:23pm

It's the Argc. :)

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Friday, June 29th 2012, 6:13pm

Oops TYPO! Thanks Maria ;)

xxx


Me 35, DH 37 [zx151]
2 x ICSI :BFN:
1 x FET :BFN:
Nov 11 - 3rd ICSI (Immunology Cycle) :BFP: Please stay with us :pray:





Jewels' Journey - My Diary

chatterbox

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Friday, June 29th 2012, 10:48pm

Good luck MB :) I did indeed only have IL's but my TNF was within normal limits - it was my NK cells that was through the roof.

I think you'r right - you have to trust your clinic that's what they're their for. It takes a leap of faith as most of us want to be in control and aware of EVERY little tweek to our protocols. xfingers that everything is as it should be for this cycle

blowkiss

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

  • "Miraclebaby" started this thread

Posts: 1,728

Reg: Dec 16th 2007

Location: London

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Sunday, July 1st 2012, 2:49pm

Lol at Argo! I even Googled it and as always, there was even something called Argo that did IVF but didn't think it was as in some random location.

Chatterbox, thanks so much for the email and good wishes. Hope all is well with you. xx

Update is that we saw Dr Gorgy and he has asked us to postpone starting our cycle by a month to try and sort out my TH1:TH2. He said that the positive is that we now know what my body will do when I get pregnant. He's given me two more humira injection, and the last injection will be followed immediately with an Intralipid drip. I asked why humira if it didn't work previously, and he said because it could still work.

I'm actually relieved about postponing the cycle for a month because it will avoid the nightmare of taxing into Central London during the Olympics. It also avoids being bang in the middle of IVF with 4 houseguests who are staying for 6 weeks!

Whatever the next test results show in late July, we'll be starting a cycle with our August cycle.

Thanks again for all your support.

xx

TTC 9.5 yrs; Me: 40, PCOS? DH: 43, MF
1-4 ICSI: BFN
5 IMSI Immune Dr Gorgy: A/biotics, DHEA, Humira, Intralipid, LIT, endoscratch, IVIg, clexane, steroids, prontogest, neupogen. bio BFP
6 PICSI Dr G BFN
7 FET Dr G 8/13: failed BFP
8 PICSI 2014?

The end of this journey shall justify the pains. We must win this fight
.

Diary

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