Humira Chat ~ Part 2 (formerly Humira Ladies/Experiences)

[Amily]

Hello ladies
Could anyone advise? I had my second Humira injection on 6th March. I haven't been able to get retested yet but will this week (long trip to London).
The thing is that I have to start downreggging in about 25 days depending on (AF). I put a question on another thread as to whether it was therefore worth testing (as I can't really do anything about result). I have been told (thank you Carmella) that Humira shuts down the ovaries so I need to wait 2-3 months. If this is the case, I am in trouble. I am gutted as I wasn't told that by Dr G. Could anyone help? Thank you.

[FertilityFriends]

[Tama]

Morning Amily, ladies please correct me if I am wrong, but I have not read that humira shuts down the ovaries? It is a drug used by many patients for immune issues such as rheumatoid arthritis and is used by doctors like Dr G for helping lower TNFa levels. I took my 2nd humira injection about 2-3 weeks before starting dr'ing and as such didn't have time to re-test. If you are worried then I would speak to Dr G, but I have not read this. Hope this helps hun  xx

[jo_11]

Tama: Yes, I'm with you; humira does not shut down the ovaries it reduces TNFa which is a cytokine. Many ladies use humira then go straight on to cycle. The only time I believe ladies are asked to wait a month or so is where TNFa was above 40 and it's believed levels may affect egg quality so it may be useful to ov out affected eggs. Humira effects only last for 5 mths though, so timing's quite crucial.

[Snoflake]

Girls,
 
I am looking for some advice.  I am currently on meds for an FET cycle with transfer schedule for April 7th.  This will be my 4th cycle - prior to this I did 3 IVF's.  My first BFN, my second BFP but miscarried at 9.5 weeks, my third BFP but miscarried at 6.5 weeks.  So now we are doing an FET as we have 4 frozen blasts.
 
After my second IVF it was discovered that I have elevated killer cells and cytokines.  I was put on Humira prior to my last IVF - after 2 injections my levels reduced to 40% from 43.4% but after the next two injections my levels went up to 44%.  Following that I had intralipids instead as my consultant wouldn't prescribe any more Humira to me - said it wasn't recommended.  I managed to get a BFP but as I said above miscarried at 6.5 weeks.
 
For this FET, my consultant has prescribed Humira to me again.  I have taken my first two rounds of injections and got my results back today.  My levels have reduced to 40% from 44% so I am now faced with a bit of a dilemma - do I take another two injections and possibly risk the same result as last time, i.e. my levels go up again or do I take the 2 injections just in case they reduce more?  My consultant has given me the choice - if I don't take the Humira it means I will be having 2 infusions of intralipids (100ml) prior to transfer and one after transfer.
 
Can someone please offer me some advice?  I really want to give myself the best possible chance this time.

[Lanta]

Afternoon ladies

Snoflake - I'm in a very similar boat to you.  I've just done 2 courses of Humira and my TNFa levels went from 41.1 to 44.7 to 46.2  So now I'm wishing I hadn't bothered.... if this cycle fails I probably wouldn't bother with Humira for future cycles given the cost and the delay in tx.  Like you through I've been advised to take 2 x intralipids during DR & Stimms.  Not sure what to advise you really as I think everyone is different.  Humira obviously works for a lot of people, but also Intralipds are getting increasing success rates now so perhaps that is the way to go

What I'd be interested in hearing is any success stories from people who've taken Humira but still had high TNFa levels once they started tx

The nurse assured me to do that the fact my levels were still high wouldn't effect the chances of success but I am obviously sceptical otherwise why do they give you Humira to start with!

Jo-11 - it's interesting that ladies with levels >40 are advised to wait to ovulate out the bad eggs.  They didn't mention that but by the time EC comes around I would have had 2 ovulations since the Humira... so hopefully that's got rid of the bad eggs!

Dreams - great to see that you had a DS after Humira.  May I ask if your levels came down <30 by the time you started tx?  Although I've had a couple of failed IVF tx I think we do fall into the unexplained camp as I've never been pg so in my mind it has to be my naughty immunes that are the problem.

[Snoflake]

Hi Lanta,
 
Thanks for replying to my post.
 
Hmmm....I'm really not sure what to do at all.  At my levels have come down from my first round of injections, albet it only a very small amount, I am wondering should I leave them as is and just have the intralipids.  It's a very hard one to call. 
 
For my last IVF, my cytokines were at 44% and I still managed to get pregnant...mind you I did miscarry at 5.5 weeks but I got pregnant all the same.  Same for my previous cycle but I have no idea what level my cytokines were as I didn't have them tested until after.
 
Will have to have a good think about this over the weekend.
 
If anyone else can offer any advice would GREATLY appreciate it.

[morrigan]

I'm not sure if this helps or not but I had 2 shots if humira and my tnfa came down from 38.6 to 30.0. Dr gorgy wanted me to have two more shots but I decided against and had two lots of intralipid instead. I started my ivf cycle with my next cycle. I am now 4 weeks pregnant but there is a however as my progesterone levels are dropping and I'm waiting to see what second beta says so not feeling confident this is a sticky one - so no idea if that means I was right or wrong ! I know dr gorgy likes it under 25 but some say 30.

[Amily]

Thank you Jo and Tama!
Spoke to Dr Gorgy today and he said it was OK to go ahead. Big relief. Thanks for your replies.

[jo_11]

Lanta: So sorry to read your bloomin' levels have gone up again ^hug me^ Re ov out eggs, I believe it was just one or two months, so sounds like you'll be fine. The thing that was different for my second round of humira was that Dr G had me do IL with my second shot and I'm sure that's what brought my levels down.

Morrigan: Just sent you a PM to congratulate you on your BFP but just read your post here. Are they going to increase luteal support for you? Fx all's ok.

Snoflake: Sorry hun, not sure what I'd do in your position... Your levels did come down so maybe another go, although it does mean a delay to getting going. It's difficult to weigh up the pros and cons isn't it? Oh for a crystal ball!

[Tina K]

Hello
I wondered if anyone has any advice?
I have to take my second humira shot on Saturday 26th march and I was told by dr gorgy to have intralipids at the same time (as I dont have time now before treatment to do any more humira). I have booked to have ILs on Monday 28th. When dr gorgy said "at the same time" do you think it needs to be on the same day or do you think the Monday will be ok? Loathe to spend £120 to ask the question?!!!
Thanks all and lots of luck and baby dust to everyone
Tina x