Let's discuss: the controversy over immune treatments

may2806

Ok I have spent the better part of today googling when I should be working. When I first started down the immune path with the RI, I thought that this had to be the answer. But after IVIG did absolutely nothing to affect my NK T cells (which RI says is the problem), as you ladies know I've been debating about his treatment's effectiveness. (RI had told me 80 percent of his patients that he recommends IVIG for has success.)

So I'm trying to get to the bottom of the controversy because I don't know who to believe. Yes, I know there are examples of women who've gone to RIs and gotten/stayed pg, but that's just anecdotal. If there are studies that support immune treatment, but then why do the vast majority of REs still not "believe in" the treatment? True, most people used to think the world was flat, but these are top scientists who've dedicated their lives to fixing IF issues. Why would they be so against something if there is proof it works?

So far all I've heard is from women who are very defensive about immune treatment and say that REs just don't "understand" it. I don't know what that means - either there are studies that prove it or there aren't. And if there aren't studies that prove it, why not? This isn't exactly a new area - Dr B.eer started researching this a long time ago.

I'm not looking for a defensive argument, or an anecdotal one, and I'm still on the fence myself - I just want an objective reasoning for this controversy.

I know I'm a AW today, but it's been slow around here  

 

mdluv21

I don't have a great arguement for it but I worked with the Beer center and my RE is one of the few that is a HUGE believer in it. I didn't know if it helped but I knew it couldn't hurt.  After everything I was willing to try anything to increase my odds of a take home baby.  It did hurt our credit card but I still think it was worth it but again that is just my opinion.  I decided to put all my trust in my RE and do everything he asked.

may2806

mdluv21:

it couldn't hurt.

I plan to continue immune treatment (RI is recommending Neupogen this time around), but there was one thing my RE wouldn't agree to (Letrozole, see my post below), so that's why I've really been thinking about the controversy when it comes to who to believe.

Also, I would totally spend the money for a take-home baby; but it's really hard to swallow spending 15K on a controversial treatment that didn't work, as I did last cycle with IVIG.

Gregermis

My RE doesn't believe in immune stuff either... DH and I were willing to seek help from someone who does and at least get testing done if this cycle hadn't worked.  Then make a decision from there....

New is a relative term... it takes a long time for opinions to be formed before studies get done.  And doing a study isnt' so straight forward... there are SOOOOO many factors that play roles that you have to consider like diet, environmental exposures, etc... so a lot of studies get proposed, but not approved.  And then some that get approved get slammed by other scientists.  Biology is complicated... it's why I got the hell out and now work for an aerospace company.

So I can understand why RE may be iffy, but I was really irritated that mine wouldn't consider any of it, even if we ruled out everything else.  IMO if everything you know hasn't worked, you need to be open to trying other things. 

I sought help from a rheumatologist because I do have a known rheumatology condition (though it isn't suppose to affect fertility anything).  I'm on hydroxychloroquine now, which my RE okay to take through pg...for "joint pain"... which I've had since I was 12.  My rheumatologist has several patients she's share with my fertility dr that she put on this and finally they were able to carry.  But I think I make 5... so ... 

This is the longest I've been pg.  Was the hydroxychloroquine to blame?  Was it because I'm GF now?  Was it finally "my time"?  I don't know.  I've never had my NK cells tested, though.

And a point about the NK cells... the issue my RE has with that test is that you are testing the NK cells in your blood stream which have NOT been confirmed to correlate with the NK cells in your ute.  They are different.  I can respect that opinion from my RE.  I was still going to call Dr. Braverman and probably get those tested... but if they came back high.... we probably would have just gone to adoption and had that be our deciding factor.

 okay, I'm rambling now, but those are some of my thoughts.  I'm not really in either camp at this point.

Edwina.McDunnough

They way it was explained to me at c.rmi is that there is compelling argument that immune issues can be a contributing factor, however the efficacy if the treatment is what is controversial. A conservative clinic like cor.nell will not do something "for the heck of it" and since most of the immune treatments are considered experimental, they are off the table when it comes to offered options. Even Ya.le's EFT test has inconclusive results and have been dropped from practice there after scrutiny. This kind of clinic will only move forward with treatments that have?to their standards?proven usefulness. On the other hand, a clinic may throw meds or treatments at a patient without just cause and it can be more harm than good. Immune issues and therapies are just not researched enough to be accepted widely as a safe and reliable treatment so either it's avoided entirely or possibly used and abused, with a very small group of specialists able to contribute constructively to its development. (Not to say that expertise is all that counts; all things being equal, one specialist and how their clinic functions just may be a better match for you personality-wise.)

It sounds all gross and creepy, but (and I'm no expert on this) that's probably how all medicine works and how progress manifests itself. Even all the "standard" practices at conservative clinics undergo change over time because of experimental research. And all this stuff is likely OOP because it's unproven and not under what insurance carriers would consider a good investment. So there's the rub. The most desperate and worst cases have to pay the most to get treatment that is, in the end, experimental and unreliable. Some patients like the comfort of a more conservative approach (me!), others more readily embrace a maverick approach. It's up to you to find the best match for you and what you're comfortable with, and what you need to do for yourself so that you have the least regrets or closure if that's where you are at. 

I struggle with these issues as well because of the price tag involved especially when coupled with DE. There aren't any right answers. I wish there was an easier path for you. 

Edwina.McDunnough

mdluv, how was working with beer in addition to your clinic? Were there any issues or concerns coordinating the two parties, getting prescriptions, etc? does beer require you to work with approved REs, or similar, or can patients work with their existing RE and they will deal? You can message me if you prefer.

naybird

I honestly don't know what to believe regarding immune treatments.

My first RE fully believed in it and pushed it hard.  I did Intralipids and IVIG with this RE, and had 3 failed IVFs and a failed FET. 

My new RE didn't believe in the immune treatments or the NK cells.  That was the time I got pregnant and got my take home baby, on my first try with her.

The one time 6+ years ago I did get pregnant on my own was without any of the treatments.  I was told the intralipids and IVIG cold be surpressing my system too much. 

There were also other factors that could have resulted in my sucess.  New RE.  New RE has a MUCH better lab, I wasn't working during this cycle and didn't have the stress of my job and my miserable commute.

So really, I don't know what to think about it all.  You hear strong arguments on both sides, it really just makes my head spin!

Good luck.. I hope whatever road you take leads to sucess!

mdluv21

may2806:

mdluv21:

it couldn't hurt.

I plan to continue immune treatment (RI is recommending Neupogen this time around), but there was one thing my RE wouldn't agree to (Letrozole, see my post below), so that's why I've really been thinking about the controversy when it comes to who to believe.

Also, I would totally spend the money for a take-home baby; but it's really hard to swallow spending 15K on a controversial treatment that didn't work, as I did last cycle with IVIG.

 

I am really sorry hon.  Your situation is much harder because my RE and the Beer center work closely together so the didn't have conflicting opinions.  However, once I did get pregnant my MFM did have issues with some of the treatments they had me on and I had to make a gut call on that.

How many IVIG did you do?? They are $2,300 a pop here. 

mdluv21

Edwina.McDunnough:

mdluv, how was working with beer in addition to your clinic? Were there any issues or concerns coordinating the two parties, getting prescriptions, etc? does beer require you to work with approved REs, or similar, or can patients work with their existing RE and they will deal? You can message me if you prefer.

You know it was easy for me because they are both right here and recommend one another.  I know other ladies from my RESOLVE group though work with Beer and other RE's but I am not sure how easy a process it is.  I know one cycled at CCRM who against immune treatments and then did them anyway with Beer so I think they will deal.  However I am not sure how it work if you are not her local...0 

Edwina.McDunnough

thanks mdluv!

may2806

mdluv21:

may2806:

mdluv21:

it couldn't hurt.

I plan to continue immune treatment (RI is recommending Neupogen this time around), but there was one thing my RE wouldn't agree to (Letrozole, see my post below), so that's why I've really been thinking about the controversy when it comes to who to believe.

Also, I would totally spend the money for a take-home baby; but it's really hard to swallow spending 15K on a controversial treatment that didn't work, as I did last cycle with IVIG.

 

I am really sorry hon.  Your situation is much harder because my RE and the Beer center work closely together so the didn't have conflicting opinions.  However, once I did get pregnant my MFM did have issues with some of the treatments they had me on and I had to make a gut call on that.

How many IVIG did you do?? They are $2,300 a pop here. 

Mine were 3k per day and I did four days 2x of two days each. Plus I had to pay the RI for his services.

When you say gut call, you mean you continued the immune treatments?

mdluv21

may2806:

mdluv21:

may2806:

mdluv21:

it couldn't hurt.

I plan to continue immune treatment (RI is recommending Neupogen this time around), but there was one thing my RE wouldn't agree to (Letrozole, see my post below), so that's why I've really been thinking about the controversy when it comes to who to believe.

Also, I would totally spend the money for a take-home baby; but it's really hard to swallow spending 15K on a controversial treatment that didn't work, as I did last cycle with IVIG.

 

I am really sorry hon.  Your situation is much harder because my RE and the Beer center work closely together so the didn't have conflicting opinions.  However, once I did get pregnant my MFM did have issues with some of the treatments they had me on and I had to make a gut call on that.

How many IVIG did you do?? They are $2,300 a pop here. 

Mine were 3k per day and I did four days 2x of two days each. Plus I had to pay the RI for his services. When you say gut call, you mean you continued the immune treatments?

 

 

Yes and I did continue them though i did intralipids after getting pregnant until 16 weeks.  I am still doing lovenox every day.  I did dexamethesone until 8 weeks.

That is a lot of IVIG.  The most I have heard of here is 2 days of 1 treatment a day.  Again I am sorry it is so hard and so expensive.   

may2806

mdluv21:

may2806:

mdluv21:

may2806:

mdluv21:

it couldn't hurt.

I plan to continue immune treatment (RI is recommending Neupogen this time around), but there was one thing my RE wouldn't agree to (Letrozole, see my post below), so that's why I've really been thinking about the controversy when it comes to who to believe.

Also, I would totally spend the money for a take-home baby; but it's really hard to swallow spending 15K on a controversial treatment that didn't work, as I did last cycle with IVIG.

 

I am really sorry hon.  Your situation is much harder because my RE and the Beer center work closely together so the didn't have conflicting opinions.  However, once I did get pregnant my MFM did have issues with some of the treatments they had me on and I had to make a gut call on that.

How many IVIG did you do?? They are $2,300 a pop here. 

Mine were 3k per day and I did four days 2x of two days each. Plus I had to pay the RI for his services.

When you say gut call, you mean you continued the immune treatments?

 

 

Yes and I did continue them though i did intralipids after getting pregnant until 16 weeks.  I am still doing lovenox every day.  I did dexamethesone until 8 weeks.

That is a lot of IVIG.  The most I have heard of here is 2 days of 1 treatment a day.  Again I am sorry it is so hard and so expensive.  :( 

Sorry I think my post was confusing I did two consecutive days of IVIG twice. So four days total. At 3k each that's 12k and then I paid RI. When pregnant, I was supposed to do two days every four weeks until second tri.