[KiwiJen]

Hi Everyone,

My name is Jen. I am almost 30, married for 7 years with 1 child. I am living in NZ but use a lot of UK resources as they are very familiar medical wise with NZ health. I am still currently undergoing diagnosis because I am ANA- but my rheum is 90% certain I have Lupus.

I think it's something that has affected me since I was 20 as I am a recurrent miscarrier (7 miscarriages, 8 lost angels) who has had 'flares' after each miscarriage. I was told time after time it was just a virus, or even someone suggesting a virus forced a miscarriage, but last year I lost twin girls and had 3 back to back D&Cs. 2 days after my last D&C I felt really 'off'. That night I saw a huge white light and felt my body shake. After that I was hit with the largest flare my GP has seen. I was put into hospital on oxygen with my liver failing.

My GP suggested 2 days later that I had Lupus and I finally saw a rheum 14 weeks later. He said I had a mixed connective tissue disease, then said it might be Still's, and now has come back to Lupus.

It is such a horrible disease! I am often struck down with very bad pleurisy and have been on steroids for almost 14 months now. I seem to go up to 20mg, work my way down to 5 for a week then back up to 20mg. The weaning process is very hard on my body.

I cannot stomach plaquinel, MTX made me too sun sensitive (got 2nd degree burns across my chest despite wearing a long sleeve shirt!) and I am allergic to AZA.

My GP (trained in London) suggested this website as he has had many patients from the uk on this site.

I have 1 gorgeous almost 3 year old girl Sophie and we would love (are we crazy?!) to have more children.

The best part of finally knowing is we have a reason to the miscarriages. It has been a heart-breaking ride and at last we finally know.

The worst part has been the physical pain and pleurisy.

I look forward to learning and meeting you all.

 

[Katharine]

Hello Jen and welcome

I'm so sorry to hear of the tough time you have had and of your miscarriages but am glad you can find a little comfort in knowing why that happened. As you seem to be being very well followed up I presume that you have also been checked out for APS or Hughe's syndrome which can cause miscarriages and other problems in pregnancy?

I hope you enjoy being here with us. It is nice to hear of a doc telling someone about the site. I was also sent here by a doc but she is a friend rather than my doc - She is a pyschiatrist and I don't need one of those yet :rotfl:

Katharine

 

[KiwiJen]

Hi Katharine, thanks for the welcome.

I have been tested for APS and am negative for it. The Rheum does not think it is the cause of the miscarriages but it has been suggested for me to try Heparin if we try again.

I take 4 times the normal amount of folic acid in hopes that it's recurrent neural tube defects but our twin girls tested completely normal. It has been a devastating run.

Rheumatology in NZ is a really poor area of health and I've only seen my rheum 3 times. Each time I've seen him I've got a new disease and it's really frustrating. My GP, however, is excellent.

We are moving to the capital to have access to better health care.

The current Rheum I see is the only doctor for 3 entire provinces. And he's not exactly a nice guy.

So we're really thrilled to be moving.

 

[mysharonna]

Hi Jen and welcome!

Glad you found this site. It is a great source for information, support and friendship. My heart breaks to hear of all the troubles you have had...hopefully the heparin will help next time around if you decide to try. If you havent done so already, you should consult an OB who is experienced with high risk pregnancies.

Your GP sounds like a keeper! I am often jealous because it seems all the lupus experts are located in the UK.

I hope you get some answers soon and treatment as well. Take care.

Sharon

 

[LolaLola]

Hello Jen and a big welcome. I am so sorry to hear of the losses of your babies.
You need a big Hug.
x Lola

 

[Raglet]

the main problem with rheumatology in New Zealand is that we are very short of rheumatologists, so they are very hard to get into, and follow up is pretty limited.

The dx doesn't matter nearly as much as the treatment, although of course it is satisfying to be given a specific dx. Cellcept is also available in Nz, though you have to get it approved for funding because it's not on pharmacs approved list, so maybe you could ask your rheumie as to whether that could be a possibility ?

Best of luck with your journey - I had multiple miscarriages too (I have APS) then eventually a healthy full term pg and I never tried again. Figured I'd stop while I was ahead.

nice to see another kiwi out there, it doesn't happen often

raglet

 

[KiwiJen]

Hi Raglet.

Thanks for the information on Cellcept. It appears to be a similar drug to AZA so I'm not too sure how I feel about it. The AZA allergy was really bad and it scares me to try a similar drug.

I feel a similar way to you. I don't know if we will try again but I want it to be an option for us. I have a friend who has had 12 miscarriages and has 1 son and newborn twins. So I know it can be done.

I just don't know if I want to keep trying.