After waiting 3 weeks, I go back tomorrow to get all my bloodwork results. I am very curious and anxious to find out what the results are. For those that don't remember, the rheumy thinks I have sjogren's and antiphospholipid syndrome (my ANA was 1:2560). It will be interesting to see if she is right. She is also tested me for primary biliary cirrhosis and autoimmune hepatitis which sort of freaks me out. I think I am most anxious about those results. I am going to definitely request a copy of the results so I will have to obsess over and do my own research on. I will update when I get home.
Follow-up tomorrow morning
1 - 16 of 16 Posts
Clare
Joined
·
4,445 Posts
Hope it goes well..
Claire X
Claire X
Well, sorry to report I had a very frustrating appointment. Not so much with the doctor but with the results. My ANA was now positive but only at 1:160 from 1:2560 about 3 months ago. The only thing that was positive was cardiolipin antibody. I am relieved that I have no autoimmune liver stuff going on but was sure that either the lupus or sjogren's tests would be positive. I have been dealing with infertility and had a lot of complications with my first pregnancy so I am glad we figured out that I have the cariolipin antibody but I just thought the blood would have revealed so much more. I do like my doctor. She said based on my symptoms alone she still thinks I have sjogren's syndrome. She told me I could get a lip biopsy but that she felt it was a waste of time because it wouldn't change how she would treat me. She gave me a prescription for plaquenil and wants to see me in 3 months. The only thing is she doesn't want me to get pregnant on plaquenil so I have to make a decision what to do. Put trying to conceive on hold or put possible relief of symptoms on hold. I guess the appointment could have gone worse. My doctor is willing to treat without positive bloodwork. I just can't help but think if all this testing was done when my ANA was 1:2560 that more results would have been positive. What are your thoughts on all of this?? Does plaquenil make a big difference in symptoms especially fatigue?? Thanks.
I have had the ANA measured 3 times... at 1:320, then 1:1280, and the last time was 1:2560. My only other positive antibody is also the ACL (anti-cardiolipin) which was only tested on two occasions several months apart. Yet with those results as well as my symptoms (joint pain, malar rash, sun sensitive rash, pleuritis, costochondritis, etc.!) I was diagnosed and treated. I'm glad that she has started treatment based on your symptoms and positive blood results, and she is probably right that the only reason to get the lip biopsy is if it's important to you to know for absolute certainty what you have since her treatment probably wouldn't change no matter what it came back as.
These antibody tests... seem to have no rhyme or reason sometimes. There is no reason to suspect that you would have had more positives if the additional testing was done with the other lot of bloods which showed the higher ANA even though I can see why you might think that.
I think what your doctor said did makes complete sense with the exception of advising you to not get pregnant on Plaquenil. The advice to not get pregnant just because you're on Plaquenil is a bit out-dated. If however, she really meant that you should wait until you are more stable in your disease activity then that's spot on too. Most all doctors will advise women to stay on Plaquenil while trying to conceive, during the pregnancy, and after even if breastfeeding. You may want to ask her about that again at your next appointment.
These antibody tests... seem to have no rhyme or reason sometimes. There is no reason to suspect that you would have had more positives if the additional testing was done with the other lot of bloods which showed the higher ANA even though I can see why you might think that.
I think what your doctor said did makes complete sense with the exception of advising you to not get pregnant on Plaquenil. The advice to not get pregnant just because you're on Plaquenil is a bit out-dated. If however, she really meant that you should wait until you are more stable in your disease activity then that's spot on too. Most all doctors will advise women to stay on Plaquenil while trying to conceive, during the pregnancy, and after even if breastfeeding. You may want to ask her about that again at your next appointment.
Maia- Thanks for the reply. As far as the plaquenil, she said it is known to cause cleft palate. I need to do some research on my own. She was pretty clear that it was the plaquenil (vs. disease activity). I have an appointment with my OB next week so I will ask him. That is interesting that you have the same positive tests as me. I don't understand why the other tests don't show up positive if we truly have the disease (lupus, sjogren's, etc). Are you on anything for the anti-cardiolipin antibody (aspirin?)?
Liz:
I only tested positive once on the ANA and also have the pos anti-cardiolipins, otherwise I am completely serum negative.
All that matters is the treatment not the name.
I never heard that about plaquenil...I would definately do the research.
I take baby asprin for the APS.
Stephanie
I only tested positive once on the ANA and also have the pos anti-cardiolipins, otherwise I am completely serum negative.
All that matters is the treatment not the name.
I never heard that about plaquenil...I would definately do the research.
I take baby asprin for the APS.
Stephanie
I have been advised that I can take baby aspirin/low dose aspirin as a precautionary measure but no other treatment for that. I was advised to take that before pregnancy and during pregnancy too by the way...
As for cleft palate risk, it may be true but I have never heard of that. Most doctors would still advise staying on Plaquenil these days but waiting until the disease is better controlled/less active before conceiving. This is because the risks of active lupus on both mother and fetus are overall greater than the possible risks of the medication (risks such as pre-eclampsia, miscarriage, stillbirth, gestational diabetes, among other things are all higher in a patient with active lupus than stable lupus).
Oh... and as for the other antibody tests not showing positive... it's pretty much irrelevant and happens fairly often actually. Only about 50% of lupus patients test positive for the DsDNA, only about 20-30% test positive for anti-Smith (also pretty specific for lupus), and fairly low percentage positives on the other antibody tests. Only ANA is highly likely to be positive in lupus patients (95-98%). Not sure what the percentages are for Sjorgen's patients as I haven't researched that as much.
Hope this helps.
As for cleft palate risk, it may be true but I have never heard of that. Most doctors would still advise staying on Plaquenil these days but waiting until the disease is better controlled/less active before conceiving. This is because the risks of active lupus on both mother and fetus are overall greater than the possible risks of the medication (risks such as pre-eclampsia, miscarriage, stillbirth, gestational diabetes, among other things are all higher in a patient with active lupus than stable lupus).
Oh... and as for the other antibody tests not showing positive... it's pretty much irrelevant and happens fairly often actually. Only about 50% of lupus patients test positive for the DsDNA, only about 20-30% test positive for anti-Smith (also pretty specific for lupus), and fairly low percentage positives on the other antibody tests. Only ANA is highly likely to be positive in lupus patients (95-98%). Not sure what the percentages are for Sjorgen's patients as I haven't researched that as much.
Hope this helps.
Thanks guys. I will ask my OB next week his opinion on the plaquenil issue before I start it. It is all very interesting to me. I had a really complicated pregnancy including severe preeclampsia and placental issues (my placenta was filled with clots and basically non-functional toward the end). This could have all been related to my underlying autoimmune stuff. Plus I have unexplained infertility which I have now read can be related also to the anticardiolipin antibody. Even though the bloodwork didn't give concrete answers, I am happy that I have a doctor who seems to listen to me and want to treat me even without the positive bloodwork. Hey, it took 15 years of symptoms to get a positive ANA...I at least have that to show that there is probably something autoimmune going on (in addition to the positive anticardiolipins). Maybe it will take another 15 years for some more blood tests to come up positive. It is all frustrating...but I am trying to make the best of it. I hope that I can start the plaquenil and see if I get some relief without having to put trying to conceive on hold!
Hello Liza
I think you have made great progress. It doesn't matter that the ANA was lower this time than 3 months ago, because it can vary and doesn't indicate disease activity.
However, I would be very concerned to be in the care of a rheumy who is so woefully misinformed about Plaquenil and pregnancy. She is very wrong about this . It is in fact very well known that Plaquenil does not cause fetal deformities of any particular sort. The problems that occur in women on Plaquenil are as varied in type and no more common than in women who are not on Plaquenil.
The only mention of cleft palate I have ever come across, off the top of my head, was in lab rats treated with much larger doses of antimalarial than used in treating humans and I think that might have been with chloroquine not Plaquenil. I would need to check out that source.
The other single mention of fetal deformity is the case of " a woman with discoid lupus who 'intermittently' took 500mgs of chloroquine a day, a dose more than twice that usually recommended. Four of her seven pregnancies conceived while on chloroquine resulted in 3 children with fetal abnormalities and one spontaneous abortion"
(Dubois' SLE p1021)
There is plenty of evidence from world leading lupologists that Plaquenil can be and often is continued safely during pregnancy rather than risking a flare or worsening disease. Another advantage of Plaquenil slight blood thinning properties which is considered as helpful prophylaxis against clotting along with aspirin.
Of course it is best not to have been stable and not on any meds for 6 months before conceiving but the fact is that few women achieve this ideal state.
The question of infertility being higher with either SLE or and APS doesn't seem proven at all, uncertain, unknown or highly controversial. I suggest reading Dubois about that, as it has some very forceful comments to make on fertility specialists. I'll see if I can find that Chapter on google.
It will be interesting to know what your OB/gyny thinks about Plaquenil but if she disagrees, you then have two doctors not in agreement which is a very unhappy situation to be in. If she agrees with the rheumy you are also in a difficult situation.
All the best
Clare
I think you have made great progress. It doesn't matter that the ANA was lower this time than 3 months ago, because it can vary and doesn't indicate disease activity.
However, I would be very concerned to be in the care of a rheumy who is so woefully misinformed about Plaquenil and pregnancy. She is very wrong about this . It is in fact very well known that Plaquenil does not cause fetal deformities of any particular sort. The problems that occur in women on Plaquenil are as varied in type and no more common than in women who are not on Plaquenil.
The only mention of cleft palate I have ever come across, off the top of my head, was in lab rats treated with much larger doses of antimalarial than used in treating humans and I think that might have been with chloroquine not Plaquenil. I would need to check out that source.
The other single mention of fetal deformity is the case of " a woman with discoid lupus who 'intermittently' took 500mgs of chloroquine a day, a dose more than twice that usually recommended. Four of her seven pregnancies conceived while on chloroquine resulted in 3 children with fetal abnormalities and one spontaneous abortion"
(Dubois' SLE p1021)
There is plenty of evidence from world leading lupologists that Plaquenil can be and often is continued safely during pregnancy rather than risking a flare or worsening disease. Another advantage of Plaquenil slight blood thinning properties which is considered as helpful prophylaxis against clotting along with aspirin.
Of course it is best not to have been stable and not on any meds for 6 months before conceiving but the fact is that few women achieve this ideal state.
The question of infertility being higher with either SLE or and APS doesn't seem proven at all, uncertain, unknown or highly controversial. I suggest reading Dubois about that, as it has some very forceful comments to make on fertility specialists. I'll see if I can find that Chapter on google.
It will be interesting to know what your OB/gyny thinks about Plaquenil but if she disagrees, you then have two doctors not in agreement which is a very unhappy situation to be in. If she agrees with the rheumy you are also in a difficult situation.
All the best
Clare
Clare, Thank you for all of the information. I am a pharmacist and am working tonight. We have great, updated references at work and will do a little research. I'll let you know what I come up with from the pharmacy perspective. I plan on taking what I find in my own research, the great information you guys have given me, my rheumatologist's opinion, and my OB's opinion (whom I trust a lot) and come up with a plan. As far as the infertility issue, I realize that it is controversial as to whether or not it factors in. Since I am unexplained infertility up to this point, and this is the only thing abnormal that has been found, I can't help but think it is somehow involved. I have found some information that it may interfere pre-implantation. I guess time will tell. I'll keep you all posted.
1 - 16 of 16 Posts
Join the discussion
