**** TTC and autoimmune disorders

[sweetlissa]

Hi ladies. I wanted to start a Thread to see if there is anyone else out there that is going through anything simillar to what I have been going through. Anyone is welcome to join in. I was diagnosed with Lupus on June 27th,2011.
I have had 3 MC's and 1 Ectopic. Since October 2010. I am 30 years old and have 3 other Healthy Children.

 

[ollysmom73]

Hey there sweetie! I haven't been diagnosed with lupus but have been having lupus like symptoms for three years and have had a positive for Antiphospholipid syndrome (APS or APLS) blood test after pregnancy. I have had three pregnancies, resulting in the birth of DS at 32 weeks and two MC's (one chemical and twins lost at 23 wks).

Lupus specialists have worked out there are blood flow issues with my pregnancies and will probably put me onto Clexane in my next pregnancy. Which gives me a 85% chance of carrying to full term. Good odds.

I am very sorry to hear about your MC's

Are you on any medications? I guess it's very early still for you since you have just found out you have Lupus.

I will try and keep an eye on this thread. Still new to this site so it will take me sometime to work out how you actually watch a thread.

 

[sweetlissa]

Hi Ollys mom. and thank you for replying. I am sorry for your losses. I can't imagine how hard it would be to loose twins so far along. I will pray that the next pregnancy goes smoothly.
I go to the family doc next week and then the Ob/GYN on the 28th and then the rhuematologist on the 18th of August. I have done tons of research and I am sure they will put me on some kind of steroids. I wish that my Ob doc was a little more proactive when it comes to my MC's. Glad to have you here at BNB... And welcome to this thread.

 

[ollysmom73]

No worries, it's a pleasure to be part of this thread. Good luck with your appointments and let us know how you get on

Good to arm yourself with as much knowledge as possible. Lupus is a very strange illness and can vary from person to person. Try and write down all the questions and take them with you to the appointment. I remember going to my first and I forgot half of the stuff I wanted to know about on the actual day. You're right, it is a shame doctors don't seem to take the whole MC thing seriously. It isn't until you've had three, they start to investigate.

To be honest, you have lupus and you might want to put this to your rhuematologist because there is definitely a connection with MC's and auto-immune disorders. They may be able to stick you on something like aspirin to further the pregnancies. I am also on steroids and have been for 20 odd years due to having another auto-immune called Myasthenia Gravis (totally under control with meds though)

Keep us updated with your situation, it's nice to find a fellow auto-immune buddy.

 

[sweetlissa]

HI, I will be happy to keep you all updated. I have been taking asprin, prenatal vitamin, extra folic acid, primrose. I am not sure if there is something else. I was thinking of taking the cleansing products. I hear they can make you very ill. Any ideas?

 

[ollysmom73]

HI, I will be happy to keep you all updated. I have been taking asprin, prenatal vitamin, extra folic acid, primrose. I am not sure if there is something else. I was thinking of taking the cleansing products. I hear they can make you very ill. Any ideas?

Hi there

Yes everything you are taking is fine. Obviously extra folic acid is vital, especially the higher dose. I am taking 5mg, took this with DS. Also aspirin is important too, as it thins the blood, helps with the lining, making it healthier etc. I take baby aspirin which over here in the UK is 75mg. Not sure about the cleansing products. You might wanna check that with your lupus specialist, when you see them. I'll asked for you in my next Lupus clinic (August 2nd).

 

[sweetlissa]

Is everyone enjoying the heatwave.. OMG... HORRIBLE. Finally a good bit of news. The guys are hear working on our yard. I will be planting grass seed tonight. WOOOOOHOOOOO I am so excited. Then on top of that our pool is being installed Saturday. Yesterday a friend of ours came over and planted 13 trees that I had bought. He brough top soil and mulch and did my flower bed too. So 4 months after we moved in We are finally getting a yard. I am so happy. ALSO I was asked to put a walk for Lupus together. So I will start working on that shortly. When I spoke to the lady today at the Ohio Fondation for Lupus I told her that I had had another MC and she said that she was sorry and that it is very common with Lupus. She also talked to me about a cleansing system and a diet. She said the Cleansing system will make me ill for a day or 2. She said you will think your going to die from vomiting and all but that I will be better able to control the Lupus afterwards. She said all the meds I have been taking are going to build up in my system and when I do the cleansing my body will release everything from my liver. SO I am still unsure if I will do that. But for now I am doing a happy dance. I will post pics later.

 

[ollysmom73]

I take it you guys are having a heatwave where you are (jealous ). Over here what should be summer is rain and a little bit chilly. I still have to wear a jacket and carry a umbrella, good old British weather, eh?

Sounds really cool that you have a pool and trees, wow your yard must be huge! Glad you're happy and keeping busy.
My lad has just finished year one at school and is on summer holidays. So will need to keep him busy for 6 long weeks.

Also nice to hear you have joined or been in touch with a Lupus foundation near you. There's one near me at my hospital, really useful because you can just jump on the bus and speak to a nurse or specialist. The appointments are very hard to get though, due to so many people attending.

Not sure if I like the sound of the vomiting with the cleansing system, but sounds like it has benefits. If you're unsure make sure you speak to a specialist before trying. One thing they tell me is to make sure you don't have any Lupus symptoms before ttc for at least six months. That way you are at your best during and after pregnancy. Anyway I look forward to you're piccys and hey guess I'll join you with the xxx

Also I forgot to add I think it's great you doing a walk. Is that like some sort of sponsored/awareness walk thing?

 

[sweetlissa]

Good morning, First I have to say a 6 weeks summer vacation would be nice. My kids get almost 3 months. From the end of May to the end of August. To long and after a while finding things to do is so hard. Today I think I might suggest the waterpark.. Cause it is going to be a hot one again. Anyway. I went to the Er Thursday night I was having some serious heart Palpatations. Turns out that I have Supraventricular Tachycardia.. On top of everything else. So My family doc had me come in Friday hooked me up to a heart monitor to wear at home for 24 hours. I feel like I can't catch a brake. Now my Lupus symptoms are coming back. My sholders are getting tight and my knees are swollen. But I have to keep on going with 3 kids it is hard to just sit. Thank God for my wonderful Husband. He took the kids to the drive in last night and let me sleep. I feel asleep at 7:30. I haven't done that in years.

 

[ollysmom73]

Hey there!

Sorry to hear about your heart and your new condition .
Is there anything they can give you to control it so you don't get the palputations again? That really sucks to have something else on top of your Lupus. But you're right, our kids make us stronger and we have no choice but to carry on. Huge hugs to you, sweetheart. Try and take it easy and you seem to have the right mental attitude to deal with something like this.

Sometimes I find when I ache or am in a lot of pain. Wheat bags and baths help a lot. I guess the warmth and relaxation is good form of pain relief. My specialist has put me on a medication called planquenil and my pains have improved vastly by 60%. The tiredness is still there but I used to get chronic chest pains, like crushing feeling. after a lot of checks it turned out to be something called Costocontritus(sp?). Anyway nothing helped the pain but this new medication. Make sure you manage the pain before it gets worse. Hope this is just a quick passing thing and you'll be up and running.

AF got me at the weekend, so I'm feeling pretty "ughh!" My stomach and everything down there is not doing so well. It seems to always make my IBS a lot worse. Well onwards and upwards to another month of trying, I suppose.

Hope you're enjoying the sunshine... three months off? Wow that is long. I think I'd probably go nuts by the second month.

Sending you more and get well soon vibes. XXxxxXX

 

[sweetlissa]

Ok yesterday I had a doppler and a Echo of my heart. I have ordered a book on the Lupus diet. I also decided that seems we are not TTC right now that getting some weight off would be good. So on my good days I am going to try to do a lil more. I also looked into Sensa and my family doc said he thinks that it will be ok seems there are no stimulants in it. So I think I might give it a shot. I am drinking about 48 oz of water a day and pushing for me. I think hydration will help with the heart issues after doing some research.

 

[ollysmom73]

Hey sweetheart, you're sounding a lot more positive and that's a really good thing. The lupus diet book sounds like a very good idea, I would definitely look into that. I have totally changed my diet around the last three weeks and all I can say is it's working heaps with my IBS. No more tummy troubles which means more energy and less stress about that. I've never heard of Sensa, did a quick google search and it's something you sprinkle onto your food, right?

My DH has just recently gone to have a semen analysis. Just thought we'd get that out the way since we have been trying for seven odd months. I have had all the relevant blood test and they have come back totally normal. His test won't be back for another 5-10 days. All this TTC is very frustrating, especially since almost I am 40

Anyway I think it's a wise decision you have made with putting TTC on hold and getting yourself fit. Let us know how all your appointments go. xxx