Immune issues and fertility

By Emma M Sunday, July 12, 2009

Hi, everyone.  Hope you're having a good day today.  A site member suggested I share my recent experiences in trying to get pregnant.  Sorry if this is a long post!

 

A bit of background: I'm based in London, England.  I am 38 and was diagnosed with RA when I was 6.  Starting with my left knee, over the years (and particularly through my 'teens), my arthritis has spread to my right knee, both hips, left foot, both elbows and shoulders and today - as 'luck' would have it - my right hand has decided to join the party so it's pretty swollen and sore.  When I have a flare-up, it's major; I often cannot walk without a walking stick and have had up to 70mls of fluid drained from one joint.  At my most recent check-up with the rheumatologist, he told me that it was pretty rare for someone of my age still to have Juvenile Chronic Arthritis and 'rather unlucky'.  Not what I needed to hear ...!  I am on no medication (lucky that my JIA has lengthy, relatively dormant periods) preferring only to have treatment during flare-ups and relying on more holistic (diet, acupuncture, yoga, etc) treatment more generally.  I am allergic to sulfasalazine (v allergic: ended up in hospital with meningitis symptoms) and hydroxycloroquine (all over body rash); both of these are safe to take in pregnancy unlike many medications.  I'd add that my docs see me as a bit of a conundrum; I have had no anti-nuclear antibodies in the past then off-the-scale ANAs within a year then none some months later ... this body is all over the place!

 

In April 08, my other half and I decided to try for a baby.  Given issues for each of us, we had to work with a fertility clinic.  We have had five failed attempts.  As we are able every time to have good quality embryos transferred, the view of the experts is that my immune system is the problem as my temperature goes sky high once my body 'recognises' alien DNA.

 

For anyone going through this or thinking of doing so, I'd urge you most strongly to ask for Chicago tests to be conducted.  These are a series of tests which investigate whether you have immune issues which will make your body un-friendly to embryos.  (There are many women who have found they have immune issues who had no formal diagnosis previously - as we have.)  For instance, they will look at the level of Natural Killer cells that you have.  These aren't bad, per se; they are the good guys that target, for instance, problem cells.  However, they can over-react to alien DNA, aka an embryo.

 

This is still a relatively new area in the UK and many clinics don't offer it or agree with treatment.  (I don't know how well it is viewed in the US.)  Because of this, many women have no idea that there are other options open to them.  I am still annoyed that - knowing I had an immune condition - this treatment wasn't mentioned let alone offered to me; I had to do my research online.  (There's a wonderful site in the UK - Fertility Friends - that has a thread on Investigations and Immunology.  It's free to join.)  In short, my tests revealed that I have elevated NKs thus treatment was ivig (immunogoblin), intrallipids (a protein supplement initially designed for feeding patients in ICU though suppresses the immune system) and prednisolone (steriods).  Not related to immune issues, I'd also add that I was put on blood anti-clotting agent (clexane) and blood thinner (aspirin) in order to increase oxygen flow to the womb.  I was also given Leukocyte Immune Therapy, comprising leukocytes from other half.  In lay terms, view it as a flu jab - aiming to decrease your body's reaction to alien DNA.

7/13/09 12:29am

I have been pregnant twice since having R.A and both times my R.A had seemed to just go away but it aways seemed to come back worse. It seemed as if the R.A was making up for lost time!! Good luck trying to have a baby dont try so hard and it will happen!!

Lene Andersen, Health Guide
7/14/09 11:50am

Thanks for much for posting your story - you certainly are having the hard time of it. I learned a lot from reading this post. Good luck with your next try and please let us know how it goes?

Anonymous
Anonymous
7/20/09 12:03am

I had significant fertility issues related to RA.  I was able to get pregnant easily, however the NK cells in my uterus caused seven miscarriages- three of them alone were in the span of seven months.  Please consider doing a web search for Dr. Allen Beer, MD.  He was based in Chicago, but consults world wide. He specializes in women with fertility issues related to autoimmune diseases.  In my case the problem was solved by remaining on Enbrel until a strong fetal heart beat was viewed on sonogram.  My Enbrel baby is now 5 years old and will be starting school this fall.  I would not have this wonderful, smart little guy without Dr. Beer's cutting edge research.  

 

Best Wishes on your journey to become a mum.

7/20/09 5:11am

Thankfully, my doc follows Dr Beer's protocol to a large degree (though I can't get to see Dr B as he died in 2006.  His book - Is Your Body Baby-Friendly? - seems to be a much-read book by those with fertility and related issues).  Despite difficulties getting there, it's good to read that ladies with RA are able to get pregnant.  Unfortunately, it seems to be because I have the inflammatory version of the disease that we're not getting there; I'm not offering the safe haven of a womb - I'm providing an oven (!) which even I find difficult to cope with so the embryos have little chance.  And, with the arrival of swine flu and the added risk that brings to pregnant ladies/people with suppressed immune systems, I fear that our chance has passed.  (We were on a time deadline as my other half is significantly older than me and doesn't wish to be a doddering dad ... Laughing)

7/27/09 10:44am

Hi ... it's good to know that people with our condition can get a little one.  My rheumatology doc says that others with JIA get PG ... just not me.  For info, I had my Chicago tests updated after the latest failed IVF cycle.  My NKs were at exactly the same levels as pre-treatment (TNF-alpha is in normal ranges), even though I'd been on 25mg prednisolone daily plus had 1 x ivig and 2 x intrallipids.  The tests indicate that ivig should work for me but the intrallipids do nothing.  However, I have to ask if any of it actually works if my NKs haven't changed?  We've decided to give it a break for a few months as my body has been overloaded on all fronts and I've been terribly emotional lately - plus my JIA has flared-up and progressed.  And, when I saw my gastroenterologist last week, he said that a) I look like a wreck (he meant well and he's not wrong!) and b) my neck is swollen so now I've got to go and have thryoid and other tests done. 

 

If reincarnation exists, then I must have been v bad in a previous life - as it seems my body goes from one crisis to another.  Oh for a Fairy Godmother with a magic wand ... Laughing

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By Emma M— Last Modified: 10/26/11, First Published: 07/12/09