Hello - anyone else with an autoimmune disease trying to concieve on Clomid?

[mum2lauren]

Hi,
I have been diagnosed with Mixed Connective Tissue Disease which is an autoimmune disease. We have been trying for baby number two for over 12 months but since going off the pill over 1 year ago, I still have not had a period. I was put on Clomid to concieve my first child which worked within 3 months, but this time around, nothing. Is there anyone else out there taking Clomid plus Provera but not even having periods?

[butterfly_warrior]

Hi, I have a weird rheumatoid arthritis type condition that is an autoimmune disease too. I also have PCOS, so certainly wasn't ovulating. Clomid didn't work for me, but provera did. I'm told that if provera won't work to induce a period, that it usually indicates that prolactin levels are high - is this something you have had checked?

As for the autoimmune problem - do you take any medications to help control that? I have to take prednisone and metformin to stop my immune system attacking my babies and killing them. The prednisone for the RA, the metformin for the PCOS.

If you are close to Sydney, I simply have to recommend Dr Gavin Sacks - the absolute expert on autoimmune problems as they relate to infertility. He's not my primary FS, but did help solve the mystery of what was going on for me. Now we just have to get lucky and get a good embryo back in... Don't panic, we need IVF mainly because of my DH's dodgy, mutant sperm.

I hope this has helped you in some way and isn't just babble.

BW

[Willow]

I'll second the recommendation for Dr Sacks - he is my FS (I don't have an autoimmune condition though) and has just helped a friend of mine who does have a rather serious auto immune condition fall prg after many attempts at IVF with other drs (her condition is such that she could not conceive without IVF).

He's a miracle worker! Just search his name here on BB and you will find quite a few threads/posts about him.

[mum2lauren]

Thankyou so much Willow and butterfly_warrior. I will deffinately try to get in touch with Dr Sacks. Thankyou so much for your advise!!!! I am so glad there are other people out there who understand! My gyno / ob does not give me any information unless I ask the right specific questions and unless I research all about my condition and the drugs prescribed, he doesn't shed any light on the subject, just "take this and see if it works this time". I am getting really frustrated!!!
butterfly_warrior - yes, I am also on prednisone at the moment, I was prescribed a really high does while in hospital just before Christmas as my autoimmune condition flared up big time - I was on 40mg and they are starting to ween me off slowly. Do you know what is a safe dose to be on while pregnant? No one has tested my Prolactin levels as far as I know. If they are high, how do you lower them? Sorry to ask all these questions, I am just so excited that we are going through the same kind of thing and that you understand!! Goodluck on your road to conceiving - keep in touch and let me know how you are travelling!!

[rosehannah]

Hi mum2lauren, I just read through this thread and wanted to wish you the best of luck, isn't it frustrating when we go to these health professional with all our worries and although they are very clever people at what they do they are not very clever at people skills. Much prized are the really clever ones that can do both. I hope you can find someone who will make you feel important and will listen to you and answer your questions.

[mum2lauren]

HI rosehannah, thanks so much for your support. Well done for breastfeeding past the 12 month mark. My daughter weened herself at 9 months - I was so dissapointed!!

[Early Kids]

Hello and Welcome to BB!! I'm sorry i can't help you with your problem... I just wanted to give you a big HUG.

Wishing you all the best for TTC. *sending baby dust*
Take Care

[MantaRay]

Moving to Conception General Discussion

[butterfly_warrior]

Hi again Mum2Lauren.

Where to start... sorry, I'm really tired at the moment so this could be disjointed!

For the prednisone - I'm on 10mg as a base level dosage, and I increase to 20mg after ovulation/embryo transfer. I find jumping straight from 10 to 20 a bit rough, so I increase slowly over a few days. I have day 6 embryo transfers as my IVF treatment, so I have the appropriate monitoring to be able to do that. I'm supposed to wean off after I hit 12 weeks. By then, the pregnancy hormones will be well and truly controlling my arthritis (I started to get relief around 8 weeks, just didn't get much further than that, but it's before we figured out most of my problems), and the pregnancy will be safe. My rheumy assures me that it's safe in pregnancy, as very little of it actually crosses the placenta. Many people stress over taking it because it's a steroid and they give steroids in cases of pre-term labour to mature the baby's lungs faster - but that's a different steroid, prednisone is fine. I don't know about a maximum safe dose, though. I'm seeing my rheumy tomorrow so I shall try to remember to ask.

If you do have high prolactin levels, I know that there is a drug to bring them down, but I don't know a lot about that area of things, I just know that it can be fixed.

Your specialist sounds incredibly frustrating! I'm not the kind of person that can tolerate having a specialist who pats me on the head and tells me that it's his job to understand everything and mine to simply follow instructions. In my case - I've got three different conditions that all interact with each other (PCOS, arthritis and anxiety, and the arthritis and anxiety flare badly depending on my hormone levels at the time which are influenced by the PCOS, and just to make life interesting, the prednisone makes my PCOS worse!), so I simply HAVE to know what's going on with each treatment, each drug, and how that's going to impact on other things. You need to have doctors that are going to work with you on that and help you. I'm so glad you're in Sydney, Dr Sacks is just lovely, and he really knows his stuff! He's attached to IVF Australia and has rooms in Kogarah and the city. I don't use him as my regular FS - I use a different IVF clinic and a doctor that's much more conveniently located for me - but I do keep in touch via email if I have any questions at all about my treatment.

Anyway, I have waffled at great length here. I hope that my tired and muddled brain has managed to throw some useful information into the waffle for you. Feel free to pick my brain at any time - I'm no expert or doctor, just someone who's had to keep track of the instructions of three different specialists and try to make sense of it all! I'll help where ever I can, if something doesn't make sense, just ask and I'll do what I can.

BW