19 replies to this topic

[hopefullyus]

Hi there,  I was just wondering if people know of any REs at Foothills that are open to immunotherapy treatments with IVF (steroids, Neupogen, heparin etc).  Thanks!  

[Maralee]

Doubt it, RFP doesn't seem to believe in immune issues.  Another member had a hard time getting them to even order immunity blood work.  Good luck

[rokgerl]

Unless something has changed with them in the last little while, I think you would be hard pressed to convince them to try these things (unless you have a valid reason, such as a positive for clotting issues or something like that).  As Maralee said, I remember a member who, after repeated miscarriages, asked for heparin as part of her treatment and they were not accommodating.

 

I see you've consulted with VFC.  Dr. Hudson is definitely WAY more cutting edge in terms of immune issues.  The consult is night and day compared to RFP.

 

Good luck!

[Lola_V]

When we had our WTF appt last May we really had to push for immune testing. Our RE finally gave in and ordered some immune tests but not all of them after a very long argument. My family doc actually ordered the remaining tests for us. Our RE told us that even if anything came back positive they wouldn't treat for it as there have not been enough studies done on the issue.

I second rokgerl regarding Dr. Hudson. He is way more open to trying various treatments. Our treatment at VFC was the complete opposite of RFP.

[hopefullyus]

Thanks ladies, 

 

Unfortunately, that's what I thought.  I was all set to go with Dr. H. (LOVE him) and when the lab coordinator (embryologist) from Vic advised that there was bad news about shipping my embryos.  She indicated that vitrified embryos (versus other forms of freezing) are not as easy to ship because they are in a small volume of liquid.  She also said that their lab is not familiar with the specific materials used at Calgary in their freezing process and so it would be harder for them to work with the embryos to thaw.  When asked, she said that they have never received vitrified embryos and that she herself would not take the risk in sending them.  Back to the drawing board:(  I am newly diagnosed with imflammatory arthritis and that combined with my last failures was why I was pushing for immune treatments.   I am going to look at going on Humira for the autoimmune issues and this has been used in more aggressive immunotherapy protocols.  I was also hoping for at least steroids and maybe IM progesterone as recommended by Dr.H.  I really wanted heparin too:(  Both of my failed IVFs, I had sig cramping/stabbing sensations around the time of presumed implantation.  At first I thought that it was implantation, but now I think it was more likely rejection.  Anybody else have similar cramping?

 

I guess I will have to hope for the best with FETs in Calgary and then do final fresh cycle in Victoria. It definitely is more convenient in Calgary, but hard to get hopes up in the absence of treatments I wanted.  My sister in law has offered surrogacy and is perfect candidate but Calgary will not even CONSIDER this unless I stayed on a teratogenic med and had letters from two internists. I started on this med (methotrexate) but had some bad skin reactions and just hate the idea of being on a med for which we need to actively prevent pregnancy.  Chances are so low anyway, but it adds insult to injury knowing that I would need to abort a baby if we did get a miracle pregnancy on this med.   Yup, I think that my only hope in doing it here in Calgary is if my rheumatologist will prescribe humira.  I think that she will - I just may have to pay for it ($1700 a month- two injections per month).  I am going to ask Calgary for something - just not sure what yet (prob steroids at least).  

 

Anyway, thank you all for the input:) and best of luck to you all.  

[hopefullyus]

For those of you without signatures, did the immunotherapy work for you?  

[rokgerl]

That's so upsetting about the embies and shipment!  That's so crappy!

 

I was going to suggest asking your GP or your specialist to provide something if RFP doesn't.  Maybe go in armed with information about rheumatoid in pregnancy and how it is dealt with?

 

I hope that things will work out for you.

 

I haven't cycled with Dr. Hudson but he did suggest immunotherapy as part of our cycle.  Intralipids and neupogen were the two things that he wanted to add.

[Pandabear8]

No, they are not open to immunological issues. After my second m/c last spring, some of the RE's I saw during the process pretty much refused immunological testing even. However my own RE (Dr.Foong) was at least open to testing for various issues. Depends on what you are diagnosed with, they may be more open minded. I think if one would be diagnosed with clotting issues, or lupus or something they do treat with heparin - however only if tests show something. Nothing experimental, so definitely no neupogen. Might have some luck with steroids around transfer time, but only same small dose they use for assisted hatching.

I consulted with Dr Hudson as well, and was going to go to VFC - however due to my busy schedule I decided to try one more FET in Calgary before going to Victoria. I went gluten free a few months before, so thought that perhaps that could be a lifestyle chance that would help. Ofcourse I don't know if that made a difference or if I just happened to get the 'good egg'.

Good luck to you in getting RFP to treat your immunological issues. Good to see you've consulted at VFC too - I've heard of many that have had success there.

[Pandabear8]

Hopefullyus, you posted while I was typing....but that is odd about the shipping of embryos, as I know someone who had their embryos shipped from RFC to VFC last year.....so unless the freezing method has changed or something.....

[hopefullyus]

Thanks for your input.  Infertility sucks, but you ladies rock!

 

Pandabear,  congrats on the successful pregnancy!  Its great it worked out for the obvious reason and also so it didn't feel like you lost out because of RFP.  I did a struct diet almost entirely gluten free for our last transfer and it did not work, but I think that it still makes sense to try again.  Stories like your do anyway.  Yes, i think that the freezing method changed recently.  I wonder actually if one of our embies is frozen with old method and the two sub ones frozen via vitrification as I recall they initially told me embryos had about 60-70% chance of coming out of freezing and most recently said 90%.  

 

Rokgerl, I agree - I am going to find a way to get at least steroids for my FET.  

 

Guess I'll need to go to VFC for last and final IVF if my FET(s) don't work.  Pandabear, did all of your embies come out okay for FET or did you lose any of the four?

 

Thanks again!

[Pandabear8]

Thanks hopefullyus. Only had to thaw one blast at each of the FET's, so didn't lose any. I thought RFP had used the same freezing technique for more than a few years already, but perhaps not.....

Hope you have some luck in getting steroids at least! It sure is dissappointing that RFP is so close minded, they are losing a lot if patients because of it.

You might want to look into Benadryl around transfer time too. I never used that, but I've heard of ladies with repeat implantation failure having success with taking Benadryl. I don't know much about it, but might be something to read up on.

All the best to you!!

[hopefullyus]

Pandabear, thats wonderful about your frozen embies.  They must be great quality:) I could be wrong about when they switched.  All I know is that the lab director at VFC said that she would not transfer the embryos if they were hers given the concerns.  I haven't spoken with Dr. H. about this new info.  Maybe he will have some other info. 

[hopefullyus]

PS. Never heard of Benydryl - I wonder what the mechanism is.  One more thing to research I guess:)

[Pandabear8]

Yeah, just regular over the counter Benadryl. As its some type of allergy medication, I think it helps make the lining more susceptible to implantation......or something like that.....I never really read much about it, as I didn't have issues with implantation, more so just staying pregnant!

[Maralee]

The member pandabear is referring to is Rstein, she's just delivered in the feb due date buddies, but I see on her sig that her IVF was done in calgary Jan 2011, and she had her embies shipped to vic.  Wonder if that makes a difference. 

[rollergirl]

I had unexplained inferitility and so Dr. H was willing to let me try anything and everything. I did heparin,steroids and intralipids and was successful with my last IVF cycle. And am doing a FET this month and doing heparin, intralipds and nepogen shot.

 

Good luck with your situation.

[hopefullyus]

Thanks ladies.  

 

Maralee - I think that they changed freezing techniques since then but its worth checking with her.  Thanks!  I wish you the best with your cycle in Victoria.  I hear ONLY poitive reports re the clinic.  

 

Rollergirl - congrats on your successful cycle!  As you said that you were doing FET, is this for child number 2 or were there sadly:( issues with pregnancy.  Best of luck with your FET!

[hopefullyus]

I mean checking re freezing technique with clinic - I'm sure she is pretty busy!

[rollergirl]

hopefully ----we had identical twins that cycle and going for number 3!

[hopefullyus]

Rollergirl - just found your info.  Wow- what a tough journey.  So glad both babies are home and wishing you the best.