Hi,
I'm Kara - 36y and 9 weeks pregnant with my 3rd child. My other 2 are 13 & 9. I was diagnosed 5/2011 and as you can imagine, life hasn't been the same since. I went through the worst spell of my life physically from 10/11-2/12. I got married 4/12 and as planned we got pregnant and now I'm tired, sore, cranky and irritable. :( I don't meet with my perinatologist for another week. I loved being pregnant and enjoyed the first 2 times and naively thought this time would be just as great. I don't have the morning sickness I had before, but I'm so, so tired and achey. I'd like to talk with others that are pregnant with SJS. I feel sad and selfish about being pregnant now.
Since becoming pregnant, I've seen my rhuemy and he is keeping me on plaquinil. I work full-time and before I got pregnant I had energy most days to do dinner and participate with the family but the last couple weeks the drive home alone exhausts me. My body is feeling more and more flu-like and the fatigue is becoming more drowsy/sleepiness. Husband doesn't understand SJS symptoms and isn't very patient with me. He thinks if I want to do something, I can. I just choose not to.
I was also dx'd with ADD 2 months ago, started taking Adderall, with some noticeable improvements, then I got pregnant and had to get off the Adderall of course. My brain fog is severely affecting me... guess I'm looking for support. Eh.
Welcome Karame,
While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.
With Sjogren's we tend to have a lot of infections so wear your "polar fleece mumps scarf" to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S's of Sjogrens.
Is it alright to be pregnant and on plaquinil?
Welcome to the group. Theres a few of us that are young like you. Maybe your fatigue is due to your pregnancy. Not sure if I can post this put theres a wonderful group in babycenter for autoimmune desease moms. There are a few with sjogrens that are pregnant and take plaquenil. I have a young daughther (2) and my son is 9. I work full time and you are right family sometimes domt undertamd that fatigue is very common and sometimes we get tired and need a break. Im still learning as Im new to this. Hopefully is just pregnancy syptomps.
Hi Karame,
Welcome to the site! You've come to the right place for support and encouragement. ;)
I apologize that I can't help with having Sjogren's while being pregnant, but we have several members here in your age group who have had children recently. I hope they will respond to you with some suggestions. I know every pregnancy is different (I have 3 children myself) but it seems that your illness might really be affecting you right now. We'll try to find some help for you.
What I CAN do is let you know that you are not alone in all this. We are a caring bunch here, who really understand and know how tough it can be to be newly diagnosed. Even those of us who have dealt with this for years, still need reassurance from time to time. This is a great place full of friendly people who "get it".
Please look around the forum. There are scads of topics and great information. Please come here anytime to ask questions, comment or just read. We look forward to hearing more from you.
Again, welcome! ;)
Melinda
Welcome dear Kara, I am glad you found us here, but so sorry you are ill. Congratulations on a new little one on it's way. You must be tired with being pregnant, and then having these other things going on.
When my body has done what it can, if I don't stop, no matter what I may want to do , it stops on its own. I have learned that the hard way.
It is hard for family to understand when it's hard for anyone to really understand I think unless they have it. I remember a time when I couldn't hold my hands over my head long enough to comb or wash my hair, and that was due to feeling so tired and weak.
On plaquenil I can now do that, but I am still very limited what or mainly how much I can do on any given day.
I am so happy now though for the little things in my day that I didn't really stop to appreciate before. I can always find little blessings, but it took me time to get to that place.
Take care, and come often.
susanep :)
Thank you all for your replies.
I have read and heard difference of opinion taking Plaquenil while pregnant. My GP ordered me off of it, which I was for 1+ week and miserable. Saw my rheumy the next week and he said it was better for myself and baby to stay on it - I would have to be monitored closely. My pharmacist brought it to my attention about the risks of Plaquenil and pregnancy but told her my rheumy instructed me to stay on it.
Last week on Wed, Thurs & Fri, I had very rough days - fatigue was bad along with irritability. I read several places (here & others) about the dosage of Plaquenil and... doubled my dose this weekend. Playing with fire, maybe. But, I had wonderful results and was able to enjoy my weekend - it gave me more hours in the day. I took another double dose this morning but will go back to my regular (200mg 2xday) tonight. I do have a call in to my rheumy asking about increasing my dosage.
Over the weekend I was filing some old papers and came across my original blood results where they had written "Sjogrens - need rheumatologist consult" and the results meant so much more now than they did at that time. Showing strong positive ssa ssb antibodies. Being pregnant I guess, it upset me. When I first heard I had SJS it meant nothing more to me than having a name for my symptoms.
I am currently trying to get pregnant and my rheumatologist recommended cutting my plaquenil dosage in half once I am pregnant. My gynecologist said the choice is mine and agrees going off completely may be worse for me than continuing, even though I get the feeling she thinks I should stop tking it.
Welcome Kara. I am so excited for you! Congrats on your pregnancy. I have two children, ages 4 and 2, and I really am dying for a third baby myself....oh stork, drop me off just one more.....:)
12 weeks and DH & I got to hear the heartbeat last night! A friend loaned me her doppler and it took us 10 min or so but we found the heartbeat - what a awesome feeling :) We haven't told our kids or family yet but I think we will this weekend.
I had a run of 4 good days over the weekend but Tuesday I crashed again, fatigue won. I'm slightly better today but I just want to climb into bed and think about *nothing*. I'm tired.
I saw the perinatologist last week and I'll start seeing them weekly/bi-weekly when I'm 16 weeks for scans to check for heart block.
Other than that, I'm just plugging along like we all do.
I'm fairly new here as well. I don't have an official dx yet, just positive ssb & on watch for sicca symptoms. I have the "try harder" discussion with my husband frequently too. I had a baby 8 months ago and hubby has hard time understanding why he can work and go to school all day and I can't keep up with a baby and basic housework. They may not ever understand, but hopefully they will develop patience for us.
raylaroo, there is a website "Spoon Theory" that may help you and your hubby better understand what you are going through.
Even a normal pregnancy can leave a woman exhausted, but when you add in an already low energy level from Sjogrens, you are doing awesome even working full time with two kids.
I think your first step is to find a way to reach your husband. He needs to understand that this isn't something you can get over with willpower. Has he ever gone to the doctor with you or searched online about sjogrens? Your rheumy could take a few minutes at the end of one of your appointments to talk privately with your husband and let him know what is going on with you and what he can do to help: that there are going to be days you cannot make dinner or even stay awake through it and that he is going to need to pick up the slack. This will ease a lot of the stress on you and we all know that less stress is better.
I have heard that cognitive therapy can help with ADD. Maybe that is something to look into while you are pregnant.
And if your kids aren't already involved in taking care of the house, now is the time to start them.
Thanks all for the replies. He seems to be more "tolerant" of me but still, doesn't understand. He's said before I have an "excuse" like I use it as a game card and pull it when I "want". It's those kind of comments that are hurtful. He has never gone with me to the rheumy but I hope he can one day.
Quote from: Karame on September 10, 2012, 08:00:54 AM
Last week on Wed, Thurs & Fri, I had very rough days - fatigue was bad along with irritability. I read several places (here & others) about the dosage of Plaquenil and... doubled my dose this weekend. Playing with fire, maybe. But, I had wonderful results and was able to enjoy my weekend - it gave me more hours in the day. I took another double dose this morning but will go back to my regular (200mg 2xday) tonight. I do have a call in to my rheumy asking about increasing my dosage.
Wanted to follow up on this - my rheumy's nurse said I can't double my dose. 2 pills (2x200mg?) is the max for anyone. She suggested instead of taking 1 in the morning and and 1 at night, to take 2 in the morning. I tried that and it helped but what helped a little more was not taking them until 10am-12pm. It seems to give me enough freedom of movement until bedtime.