[broxi1873]

Hi,
I have just been diagnosed with lupus although i've had anti cardiolipin antibodies for years which is being treated with clexane.
The Dr said there was no treatement safe in pregnancy so to just wait until after the birth ( I am only 12 weeks now).
However I am really having problems at the moment. I am getting fevers so high i soak through my pj's and the bedding, have to change sheets etc almost every night, joints are so bad i have resorted to crawling at times rather then trying to walk in the morning, and my kidneys are killing me. I've also fallen down stairs 2x.
I have broken several bones in the past and the doctors were always amazed at my ability to move broken bones, even walk on them, but this is far worse then just breaking a few bones. I am having severe anemia problems and some pain breathing. My kidneys hurt as well and i am basically miserable. i have a son almost 3 as well so this is really making it difficult to get by.
Is this the norm to avoid treatment in pg or can anything be done safely - btw i thought high fevers could be dangerous in pg too?
Also does anything really help with the joints after pg? I am so hoping I can get back to normal after this. Have had very bad flares on and off for 3 1/2 years now.

 

[Maia]

First of all - congratulations and welcome!

There are treatments for lupus that most rheumatologists consider safe (for the baby of course as well as you!). The safest is probably prednisone. Next safest would be Plaquenil, and Imuran is increasingly viewed as safe as well. These are given as the benefits of preventing lupus flares are considered as outweighing any potential risks form the medications (which appear to be minimal).

I think many doctors are less inclined to place a pregnanct patient on a new medication... than to continue medication in a patient already on them who happens to get pregnant. I don't know why that is - but it seems to be the case. You may need to express just how much pain this is causing you and how badly it is affecting your ability to live your life. Perhaps then the doctor will be more inclined to treat you.

Lupus does not normally cause kidney pain - so this may be due to something else.

I know it is advised to avoid raising your temperature above 102 or so while pregnant (i.e. avoid hot tubs and such). The most recommended medication to use to lower temperatures when pregnant is Tylenol. These recommendations are made so that women won't choose to overheat when pregnant... as it is a choice which could be risky to the baby especially in the first trimester. But if you're sick, and with fever, it can't be helped of course. Has your OB commented before on what you should do when you get one of these fevers? I hope so!

Only prednisone would bring about a quick improvement in symptoms... the other meds typically take at least 2-6 months to notice an effect. You may want to get a second opinion on starting medication now... or ask your OB for his/her input on the issue.

Good luck - I hope things improve for you soon. Of interest to you would be that sometimes an improvement occurs for women in the second trimester and beyond due to the extra natural "prednisone" produced by the baby. Happened for me - I wish you the same good fortune!

 

[classicgirl29]

well, while i certainly would not recommend this to anyone, i can tell you what meds i was on during my pregnancy.

i was on the fentanyl patch and percocet for pain and 5mg prednisone.

i found out i was pg around wk7 or 8 and my rheumy immediately made me go off all lupus specific meds. then around wk 10 i started feeling soooo bad, he put me on 5mg prednisone and i am still on it; and still minus all lupus meds b/c he won't put me on anything til i'm done nursing.

the pain meds--well, i wouldn't recommend it but that's how we managed my pregnancy. i did, in fact, taper my dosages down significantly and tried *hard* to get off them all together b/c i have been on them for roughly 2 years. turned out to be too difficult to come off them that fast so the OB decided it would be better to monitor me at low doses.

baby was A-OK; we are both doing fine now. my disease was really quiet during my last two trimesters and remains pretty quiet still, except for symptoms...no disease process.

hope that helps... and CONGRATULATIONS!!

 

[broxi1873]

Thanks for the replies,
I have chronic kidney problems and was hospitalised near kidney failure last pg. I understood lupus also caused kidney trouble, but perhaps this is a seperate issue. I was hoping if something could prevent the flares it would help with kidneys too? And possibley red blood cell count. They had me go in for iv iron last time but it didnt help much.
I'll be seeing ob monday so will discuss the fevers then.
BTW - it does come and go, some days really arent that bad, but the bad patches can be very bad. So far I think it flares up more with colds or flu,
kidney infections, or really stressful events.
I'm really worried about complications for the child as well, but hopefully the clexane will also prevent prematurity or worse? Like i said i really think I'm past miscarriage risk now.
Anyway thanks for the help.

 

[mysharonna]

Hi Broxi,

Congratulations!!:stretch:

Prednisone is definitely safe during pregnancy..in fact I recently had this very conversation with my doctor and he pretty much told me everything Maia had written in her previous post!

Quote:"There are treatments for lupus that most rheumatologists consider safe (for the baby of course as well as you!). The safest is probably prednisone. Next safest would be Plaquenil, and Imuran is increasingly viewed as safe as well. These are given as the benefits of preventing lupus flares are considered as outweighing any potential risks form the medications (which appear to be minimal). " (Maia)

I would definitely check with your OB for his input. I also had fevers in the first 3-7 weeks of my pregnancy, but they have since gone away. The first trimester I flared a bit, but everything seems to have settled down for now. My doctor instructed me to take Tylenol to minimize fever and pain.

Hope you feel better, and have a wonderful, healthy pregnancy!!