View Full Version : Will I ever be "allowed" to have a baby?

08-15-2007, 10:42 PM
I am so upset. I went to the rheumie today for a check up.

Story is that a couple of months ago, he was saying that we could start trying for a baby next month, and that I would know when it was ok to start trying as all the "little things" would go away. My cold hands/feet went away after the plaquenil so I thought we were all good to go. We had been trying for 16 months before the diagnosis without success (and irronically the next month when I was trying not to get pregnant I did- and had an early miscarriage :cry: ). He, with wonderful tact said he was glad I m/c- but another story. (cultural differences- he isn't that mean- but it was shocking to hear it).

Unfortunatly, For the last couple of weeks I have been having trouble breathing. We were having trouble saying whether it was a flare or a URTI. They put me on prednisilone to try and ease my breathing (which shocked me as if it were a virus- I didn't think it would be a good idea to suppress my immune system). Today the rheumie said it definatly was an URTI.
Problem is that the virus set off what has today been identified as vasculitis. I had a peticheal (sp?) rash for months- but the last few weeks has seen it get much worse and now my whole torso/upper legs are covered in petichea- which have joined together into big red circle rashes all over.

My heart and lungs have essentially checked out ok, although he is having another look at my kidneys. And my blood tests from last month actually came back normal- for the first time in my life!!! I was shocked.

Anyway I guess it is just a rant. I'm upset after getting my hopes up. We have been trying and wanting this since the beginning of last year and it feels like it will never happen. No guarentees even if the rheumie says we can try- given that we have been trying for so long. But to not even have the oppertunity to try really stinks.

08-16-2007, 09:33 AM
Hi Nekhbet: I am so sorry that you are having to go through this waiting again. I wish there was something that I could do to ease your frustration!

Most URTIs are due to a viral infection. if you are normally in good health, your immune system can usually clear the infection. However, for those of us with compromised immune systems, we are susceptible to infections and our immune system cannot fight them off. Many of us, if we develop URTI, will end up with pleurisy (inflammation of the membrane of the lungs) caused by the URTI. Prednisone and/or Prednisolone are the standard treatment for preventing and/or reducing the inflammation caused by the URTI. So, your doctor was correct in prescribing the Prednisolone.
As we've talked about before, your doctors are wanting you to be in remission before you get pregnant. Unfortunately, remission is just as unpredictable as the disease itself. Vasculitis is an inflammation of the blood vessels and this may affect both your arteries and your veins. Vasculitis can be serious, so I can understand why your doctor suggested that you wait, again. Vasculitis can affect both your large and small blood vessels. If small vessels are affected, you may see raised red or purplish skin lesions on your fingertips, forearms, elbows, and toes. These are due to the inflammation of the very tiny blood vessels. Sometimes, you may see tiny "splinter" hemorrhages (called infarcts) at the nailfold or you may see small nodules just under your skin. You may also see a mottled red and blue area on your skin, this is Livido Reticularis. Another skin sign which may indicate vasculitis is hives (uticaria). Vasculitic skin lesions indicate active disease and have been considered markers for involvement of other blood vessels inside the body. It is important not to confuse these changes with those due to your Raynauds phenomenon, which is seen in about half of patients with lupus, but is due to arterial spasm and not inflammation.
A Petechial rash is an extravasation (leaking or hemorrhaging) of blood into the skin, resulting in a flat, rounded or irregular, blue or purplish patch, larger than a petechia (small red or purple spots on the surface of the skin or mucous membranes as the result of tiny hemorrhages of blood vessels). You Petechial rash is most likely caused by your vasculitis which was caused by your disease. All of these symptoms indicate active Lupus.
I am so sorry that you are back in the waiting phase of attempting to become pregnant. I wish that I had some words of comfort that I could give to you. I'm sure that whatever I might say would sound much like what your doctor would say and for that, I apologize for not being able to offer you much comfort!
However, you are free to rant here as much as you like. I know that this must be a frustrating time for both you and your husband and my heart goes out to both of you.

I wish you the very best....
Peace and Blessings

08-17-2007, 03:34 PM
Hi Nekhbet,

I know the wait is hard. The more we want something and someone says wait, our hunger for it drives us into a sadder place. Your time will come, Nekhbet.

When we try so hard, stressing ourselves it can impede conceiving, delaying ovulation, aggravating Lupus..so relax. Let your body calm itself, concentrate on that part of you, your health and the Lupus symptoms may subside soon and conceiving will happen....

Relax, let your thoughts float.
Be well,

08-18-2007, 03:07 AM
Thanks. I know how much of a whinge I seem. The problem is that I haven't really been feeling terrible either- so in some ways it is easier to go into denial. I went in to see the rheumie really excited about getting my "go ahead" and instead he was talking about vasculitis and fluid around my chest/heart and to be honest I went into shutdown :oops: - just because I feel fine. He did say my heart and chest were essentially fine in the end :).

I wanted to thank you again Saysusie. I think at times I need a good whack on the head :P. After what you said, added to a few comments from people today about my weight loss (I wasn't trying)- it sort of brought home that my body *isn't* right for pregnancy right now. My hubby talked to me about complications with vasculitis and pregnancy which gave me a better idea too.

I've made an appointment with a gynae in the next month. I had to see her anyway for a follow up check and she is also a fertility specialist and used to work as an OB as a bonus. So hopefully I will able to get some testing out of the way- even if I can't act on it yet. And she may have some insights into lupus and pregnancy for me.

I have been charting my cycles for over a year. I started as we didn't get pregnant straight away- and strangely enough- I don't think I would have caught the lupus flare without it. In the past I just wrote it off these symptoms as "sick". This time, I noticed a low grade fever which then went down to "normal" but still above my "normal" and that combined with everything else lead me to think that this wasn't right. Funny the way things happen :).

09-04-2007, 04:00 PM
I know it's tough, but you really do need to be well before you get pregnant. I am pregnant now. Think of how tired and run down you are now, and multiply it by 200x. I never get enough rest and still have colds and pain and numbness. I got a real bad rash last month that took 3 weeks to go away. You may hate going to the doctor now, but will have to go even more often when you are a high risk pregnancy. :oops:
Anyway, in my opinion, living through it now, I am glad that I was getting a clean bill of health before we conceived. Good luck!

09-14-2007, 12:40 AM
Good news. I went and saw a high risk materno-foeto specialist and he has given me the go-ahead. He is running a heap of tests (mainly the clotting side of things- I have a history of DVT). These have come back negative in the past. He basically said if they come back positive then I am just taking clexane for the pregnancy. I'm supposed to take it afterwards regardless and he wants me on asprin. I'm staying on the plaquenil and taking prednisilone for flares as normal.

How fabulous is that!!! :D :D

09-14-2007, 05:32 PM
Hey Nekhbet!
Congratulations! Now that you've got the go-ahead, have fun with the trying. I wish you luck, and please let us know when you succeed!

Pretti in Pink
09-14-2007, 07:22 PM
Congratulations, I am happy for you. Let it come natural and don't stress yourself out while trying to get pregnanct. Keep us informed.

09-15-2007, 05:08 PM
Thanks. I'm just happy we get to try again.

I'm not sure how relaxed we are going to be. We are also starting infertility investigations :shock: . They gynae said that it could have been the lupus preventing me from becoming pregnant earlier , so hopefully that is all that it was and it is all sorted now.

09-16-2007, 02:45 PM
Many Congratulations!! :smilecolros: I can imagine how happy you must be!
Yes, please keep us advised as we are all rooting for you and your husband!

Peace and Blessings

12-21-2007, 05:02 AM
UPDATE! I'm pregnant! How scary is that.

About a week before I tested positive I was at the gynae and talking about our fertility results. We were told that she would recommend IVF with ICSI (the one where they inject the sperm into the egg) and we were due to start treatment in the new year.

I was going to talk to my rheumie about how that would affect my lupus, instead I got to tell him this.

:shock: :D

:multi: :smilecolros:

Pretti in Pink
12-21-2007, 05:48 AM
CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! That's a great Christmas present. Take it easy, relax and remember the first trimester is the most crucial. Again, congratulations.

12-21-2007, 08:36 AM
:onfire: :multi: :BIG: :angel: :scatter:



12-21-2007, 11:16 AM
:olympic: I'm so thrilled for you. Take it easy, I had a long scarey road but so worth it. When is your lil angle :angel: do? Good Luck, enjoy your christmas gift :x-mas: you two have. Once again: YEAH!!!!!!! :lilangel: , a new dilivery!!

12-21-2007, 01:33 PM
FANTASTIC, Nekhbet!!! :smilecolros: I can only imagine how happy you and your husband are! Keep us up to date on all the developments!


12-21-2007, 02:29 PM
CONGRATS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Its funny how life works? its truly amazing.....

12-21-2007, 11:55 PM
Thankyou- I think my hubby is still in shock :wink: . But then, so am I. The little one is due on the 16th of August.

My rheumie has handed me over to a maternal - foetal specialist to try and minimise the number of Drs I have. To many cooks and all that... Hopefully the lupus will stay under control.

04-04-2008, 03:56 AM
Just posting an update.

Still pregnant and I've had my 20 week ultrasound. Everything is looking healthy and he/she started kicking a week or so ago. Bizzare sensation :P

I've just dropped down to 1mg of prednisilone, plus the plaquenil and asprin. Feeling the fatigue more and more every time I go down even a mg, but they seem to like me on the lower doses. Generally though, I am doing better now then I was before I got pregnant :shock:

And in a strange twist, my ANA came back negative today :shock:. I'm hoping that means that my symptoms will generally stay away, but I know that you can show negative and still have problems and that it can go negative from treatment. But, we are happy with that result. I figure that it can't be a bad thing. Although occasionally I got the impression that the maternal-foetal specialist is thinking I am making it all up or something when I got the good results.


sick n tired
04-04-2008, 10:16 AM
That is so great, Nekhbet,

August 16th, is one of my son's birthdays. Do you know the gender?

I am not sure where you are from, but here in August it is closely akin to H@ll. I mean the heat is something awful.

I had heard that lupies sometimes get better at pregnancy. I have a friend who went into remission for 15 years after the pregnancy and birth of her daughter. It would be great if you followed suit, too.

Well, congratulations...you are half way through. I will be praying for a healthy delivery.


Pretti in Pink
04-04-2008, 04:41 PM
Oh Nekhbet, that is GREAT news! I am really happy for you and your husband. I pray that you continue to have a good pregnancy and your health remains stable- keep us posted with all the excitement.

04-04-2008, 06:41 PM
Now how did I miss this thread...with such wonderful happenings.

Nekhbet, this is so great...wondering IF before and here you ARE. I am very, very happy for you and your husband...

August is a beautiful month to be born...summer to fall...

Here's to happiness and a bundle of joy...hugs.

04-04-2008, 11:17 PM
Thanks guys!

We don't know the gender. Somebody crossed there legs thoughout the entire ultrasound - cheeky little bugger :wink: .
There aren't any more routine ultrasounds, but I've heard that in some lupus cases they like to have regular ultrasounds after 26 weeks to check on growth or something. If we get any more I will probably see if I can take a peak.

I'm in the southern hemisphere, so we will just be reaching the end of winter. I'm thinking it will be nice and cosy inside away from the rain and wind all rugged up (yep, I'm weird).

Also, I'm so happy for your friend Karen- even if she didn't manage to stay in remission, it would have been a really nice break for her. I am a bit nervous about a post-birth flare, but I guess we will see how I go.

04-06-2008, 08:55 AM
Nekhbet, the updates are so wonderful to read!! I'm thrilled for you! I've always wondered if I had it to do over again, if I would find out the gender or just let it be a surprise! I know those who've chosen both - all that really matters is that you have a healthy child, right? Good news that you're ANA was negative, too! Sounds like things are going well so far....keep us posted!!!


04-06-2008, 11:29 AM
Crossed their legs during the ultrasound! So, already the little one knows how to just lay back and relax. He/she knows that the world awaiting them is one filled with love from Mom and Dad...so he/she is just kicking back and taking it easy! What a wonderful picture that has conjured in my mind :lol:
I am soooooo happy for you!! Many, many congratulations.

Peace and Blessings

sick n tired
04-07-2008, 12:01 AM
Hi Nekhbet,

My older three(girls) all crossed their legs...like thay were being dainty and modest. Then along came my eldest son. When we went for a sonogram of him, he was sitting in there like he was in a recliner. Both legs were spread wide open...there was no doubt.. :D