Lupus and pregnancy.....(was thinning hair)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lynniecat
Regular Member


Date Joined Nov 2008
Total Posts : 51
   Posted 11/18/2008 9:02 PM (GMT -7)   
Hi everyone,

I am new to this group. I have suffered with a strange medical issue for six+ years and it was finally diagnosed as lupus this year. After all the doctors and different diagnosis, I still wonder if its really lupus. I have a positive ANA sometimes, but not always and its usually 1:320. I have had a positive C-reactive protein and positive anti cardiolipin antibodies on every test. I have a lot of joint pain which keeps progressing, lots of fatigue, and I break out in hives in the sun.

But now my hair is thinning and I am FREAKING out. Its thinning all over, but is very noticeable at the scalp line in the front (like a receding hair line). Has anyone else has this happen to them? Will it grow back? I was on plaquenil and prednisone but weaned off them as I am trying to get pg. Long story for another post.

Thoughts on the hair???

TIA,

Lynn

Post Edited (lynniecat) : 11/19/2008 3:27:33 PM (GMT-7)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2008 9:09 PM (GMT -7)   
(((((((((((( Lynn )))))))))))))))))

The plaquenil takes several weeks to build in your system. It should fully build by 6 months. Have you checked to see if it might be safe for pregnancy?

With your + anti-cardiolipin antibodies . . . I would strongly recommend seeking the help of a high risk pregnancy doc. That can cause thick, sticky blood which can cause miscarriage. If they properly thin your blood (sometimes as simple as a baby aspirin . . . sometimes takes more than that), you will have less likelihood of losing the pregnancy.

The plaq and/or the prednisone would have likely halted the hair thinning. Although they can cause some hair thinning, they usually stop the fast falling out that can happen before diagnoses.

Be careful about planning a pregnancy before you get this flare under control. You might be jumping in with both feet. Lots of Lupans have a healthy pregnancy, but it sounds like you are in a flare right now.

I hope this helps a little.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lynniecat
Regular Member


Date Joined Nov 2008
Total Posts : 51
   Posted 11/18/2008 9:26 PM (GMT -7)   
Well more info is that I have a high risk doctor and I lost twins in February when I go severely ill. I have a massive flare and persistent fevers that4 m would not go away. Thus I went on pred and plaquenil. I was on the plaq for 4 months and stopped that 4 months ago hoping it was out of my system. The pred definitely works for me. I think I noticed the thinning earlier this year, but its gotten really bad in the last couple of months. I am not sure if this is a lupus symptom though. We put off having children as I did not know what was wrong with me, but time kept going by and I hit 40 and decided I could not longer wait. I had to do IVF and started just after I turned 41. The first round worked, but that ended as I described above. I have done two unsuccessful round since and I am now one my last try.

Maybe the fert drugs are causing the hair loss. I just wish I knew what it was and I wish I felt sure it was really lupus..sigh. My lyme tests always are positive, but I have been treated for that for 2 full months and my rheumy thinks it just false positives and it lupus with secondary fibro, and def not lyme.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/19/2008 9:19 AM (GMT -7)   
(((((((((((((((((((( Lynn))))))))))))))))))))))

Oh dear . . . I'm so sad for all you are coping with. The stress of making such an important/emotional decision will not help Lupus, Lymes or Fibor either.

The hair loss is definitely a lupus symptom . . . but is also a symptom of many other issues as well. Many of us notice hair loss at the beginning of a flare.

So sorry about your loss. That has to be a crushing experience. And now to be up against that time clock. *sigh*

Is plaquenil unsafe for the baby? If it is approved for pregnancy, it might be a good idea and actually serves to thin the blood just a bit in most cases. I'm just don't know about its safety for pregnancy. But if you start a new topic, eliciting help re: "pregnancy and lupus" the other members who know more about that will share some info. They just won't know we are discussing pregnancy in this topic. You could even click on the "pencil" in the upper right of your first post and change the title of this topic so you don't have to explain all over again.

I would definitely visit the Lyme forum here. Your story is very familiar. Folks are treated for Lyme and it isn't effectively treated and they think they are "cured" and still have many issues. Doctors aren't always up to date on the ins and outs of Lyme's. . . . so it can take some patient education to keep things moving in that regard.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lynniecat
Regular Member


Date Joined Nov 2008
Total Posts : 51
   Posted 11/19/2008 3:28 PM (GMT -7)   
So for those who know, is plaquenil safe? My high risk doctor thought it was ok, but he thinks many things are ok if they help you get through the pregnancy!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/19/2008 3:35 PM (GMT -7)   
Oy. I'd sure rather have a doctor that says "yes" or "no" rather than "I think it's ok".....

sorry I can't help with this topic as far as pregnancy goes, but that kind of dr attitude would bother me a bit. Guess it depends on whether you trust him/her or not.

I've been on plaquenil for over 8 years, and never had any issues of any kind with it.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/19/2008 5:32 PM (GMT -7)   
One problem with approving meds for pregnancy or nursing is . . . they just don't have much info on some of the meds. If there isn't enough info, most docs will say it isn't safe. I have no clue about plaquenil . . . but you might be able to "google" studies done to check it out.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 11/19/2008 10:25 PM (GMT -7)   
When I was pregnant with my middle child... after birth, my hair fell out along the hairline... I think this is called 90 days disease...
Do you think this hair loss is related from you being pregnant? I did have hair loss with my lupus but you mentioned the receding hair and that made me think of the time I lost it after having a baby...

I sure hope you can get better and I'm sorry for your loss....

BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/20/2008 6:51 AM (GMT -7)   
Lynniecat

I am sorry for your losses

This sounds like typical lupus hair loss but of course it might be something else.. It also sounds as if your lupus was active and it is not a good idea ttc when the lupus is not stable. The ideal is to be off all medicines for 6 months but Plaquenil can be safely taken, if needed in the best interest of mother and child and so can Prednisone. Imuran too if necessary. I suggest you ask your doctor to start again on the Plaquenil and see how it goes. When you are stable then you could try reducing the dose to 200mgs and see if the lupus is OK on that dose.

You should be seeing a high risk ob gyny who will work with your rheumatologist to ensure a successful outcome. You need to know if you have the anti-Ro antibodies or the anti cardiolipins or lupus anticoagulant. There are special tests to show if the antiphospholipid antibodies are being caused by infectious diseases like Lyme or by autoimmune process like lupus- anti- beta 2 glycoprotein is one of them. If there is a chance that your previous losses were caused by APS then Heparin would usually be started to avoid clotting. Aspirin is used too sometimes and the Plaquenil also has a slightly useful bood thinning effect.


If your doctor thinks that Plaquenil cant be taken you need to get a more up-to-date one. The safe use of Plaquenil in pregnancy is well documented from major lupus pregnancy centers. The risk of flares after the baby is born also has to be considered -you need to be in the best possible health for the trials of motherhood. It does sound as if you need a more proactive and positive doctor to guide you through this difficult time.

Good Luck
BB

puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 11/20/2008 7:23 AM (GMT -7)   

Plaquenil is a catagory C drug for pregnancy.  This is according to the AAP.  This is what it means:

C

RISK CANNOT BE RULED OUT:
Adequate,well-controlled human studies are lacking, and animal studies have shown a risk to the fetus or are lacking as well. There is a chance of fetal harm if the drug is administered during pregnancy; but the potential benefits may outweigh the potential risks.

Here is a website I found when I was nursing: http://www.kellymom.com/health/meds/aap-approved-meds.html   

It has a chart for many common drugs and what the American Association of Pediatricians classify drugs for use in pregnancy and also breastfeeding.  When I discussed plaquenil with my pediatrician when I was nursing, he said it was fine during pregnacy and breastfeeding, but it seems that the jury is still out on this when it comes to pregnancy because they just haven't done enough studies.

By the way, I also miscarriedin January 2006, and then 16 months ago I had a 8lb3oz baby boy who is as strong as an ox.  However, I must add that the erratic hormone levels after my baby was born seemed to accelerate the progression of my Lupus.  I wasn't on any meds during my pregnacy but took both plaquenil and darvocet while I was nursing with no ill effects.  I wish you the very best of luck and many prayers. 


Jennifer

PCP DX Lupus and Fibro, Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/20/2008 8:33 AM (GMT -7)   
The AAP is not up-to-date. There have been clinical studies and years and years of clinical experience by top lupus pregnancy specialists, most notabley at major lupus pregnancy centers at Johns Hopkins and St Thomas' Hospital London. There has been no record of deformiity or any other problems. If these doctors were not perfectly sure they would advise against. The best advice is to be off all meds or on the lowest possible doses of the permitted ones. Lupus pregnancies should be planned along with the treating doctors.



http://www.hopkins-arthritis.org/arthritis-info/lupus/lupus-in-pregnancy.html

http://www.lupus.org.uk/information/information_informationforpatients_Antimalarials.htm

Pregnancy
Another reason for wrongly stopping the drug is pregnancy. Hydroxychloroquine is safe in pregnancy and is in routine use in our own lupus pregnancy clinic at St. Thomas' Hospital.

http://www.ima.org.il/imaj/ar00jun-10.pdf

It is our
policy to change preconceptual maternal treatment as
little as possible. We do not add prophylactic prednisolone
to the treatment, since there is no evidence that this lowers
the frequency of flares, and its side effects during
pregnancy are substantial [18]. On the other hand, hydroxychloroquine
has been shown to be safe for the fetus
[45], and its withdrawal can result in an SLE flare [46];
accordingly, we maintain this drug during the whole pregnancy
as required. SLE flares are treated according to
their severity. Rash and arthritis can be managed with
non-steroidal anti-inflammatories, which should be
stopped in late pregnancy due to their interference with
delivery and the risk of premature closure of ductus arteriosus
[47], as well as with low dose prednisolone (up to
10 mg/day) or hydroxychloroquine.
More serious manifestations, like vasculitis, nephritis
or neuropsychiatric involvement, require higher doses of
prednisolone, pulses of methyl-prednisolone – which we
do not use very often – and the early introduction of
azathioprine to allow a rapid reduction of steroid dosage.
Should this not control disease activity, pregnancy termination
and more aggressive immunosuppressive
treatment is the next step. Cyclophosphamide and methotrexate
are absolutely contraindicated during pregnancy.
Cyclosporine, which is safe during pregnancy, is recommended
by some authors for treating nephritis when
azathioprine has failed. This can be considered in individual
cases with severe but non-life-threatening disease.
Antiphospholipid syndrome
Treatment of pregnant women who have APS is directed
towards prevention of miscarriage and thromboprophylaxis.
However, not all patients with APS are at risk of
both complications [32]. Therefore, decisions regarding
treatment mostly depend on previous clinical manifestations.
The two main drugs used during pregnancy in
women with APS are low dose aspirin (75–100 mg/day)
and heparin, since prednisone does not seem to play a
major role in APS [48,49]. Indeed, women treated with
corticosteroids for pregnancy losses experience higher
rates of prematurity, hypertension and diabetes [50].

http://www.medicinenet.com/script/main/art.asp?articlekey=40223#plaq

Researchers from Johns Hopkins in Baltimore reported that Plaquenil can be safe for pregnant women with lupus.

Dr. Shiel's Perspective: Rheumatologists have been using Plaquenil during pregnancy to sustain remission in patients with lupus for some time now because previous work suggested its safety. In this study, Plaquenil did not impact the rate of live births or preterm births. The author of the study, Dr. Michelle Petri, a world's expert in lupus recommends continuing Plaquenil therapy throughout pregnancy to improve control of lupus activity.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_communitywebchats.aspx?a=504&z=93&page=3

"Certain medicines shouldn't be taken at the time of conception or during pregnancy because they cause birth defects," says Michelle Petri, M.D., M.P.H., professor of medicine at Johns Hopkins University School of Medicine and director of the Hopkins Lupus Center in Baltimore, MD. "These include thalidomide, methotrexate, leflunomide, cyclophosphamide, and mycophenolate mofetil (CellCept). Other medications, such as ACE inhibitors and NSAIDs, are stopped when the pregnancy is confirmed."

Once a woman becomes pregnant, she can continue on certain medications to maintain her own health with minimal risk to the baby. "I usually maintain Plaquenil during pregnancy," says Buyon. "I explain to my patients that Plaquenil passes through the placenta, but the risk of eye or ear toxicity in the baby is quite low, and the risk of flaring up if you stop Plaquenil may be greater. It's a long conversation.

You and your doctor should have the "long conversation" about medications as soon as you decide to conceive. Managing a pregnancy and a chronic illness is a balancing act-and keeping the lines of communication open with your healthcare team is important to maintain your and your baby's health.

http://www.suite101.com/blog/daisyelaine/lupus_and_pregnancy
Treatment in Pregnancy

High doses of aspirin and non-steroidal anti-inflammatory drugs (NSAIDs) should be avoided during the last few weeks of pregnancy. Hydroxychloroquine (Plaquenil) can be used safely during pregnancy and should not be discontinued since this could lead to disease flares. During pregnancy, prednisone, prednisolone, and methylprednisolone are the corticosteroids of choice because they are only minimally transferred to the placental circulation.

http://www.femalepatient.com/html/arc/sel/april03/028_04_019.asp

HTH
BB

lynniecat
Regular Member


Date Joined Nov 2008
Total Posts : 51
   Posted 11/20/2008 11:38 AM (GMT -7)   
Hey guys --

Thanks for the information! So to be more specific. My high risk neonatologist said a definitive "yes" on palquenil and "yes" on predisone at 5mg. Also yes on a pain patch of say fetinyl (sp). This guy is very good and he is liberal about meds. He said that you never know if at 8 years old that meds you took caused them to have a reading issue, etc -- I asked that, but they no at birth that nothing appears wrong. He only sees women who are high risk, on meds, have lupus, RA, etc. He said one patient had to take gold injections. He feels that asking a woman to not take any meds is also risky as a flare during pregnancy can be devastating, so you have to balance it all out. I am paranoid though, but also do not want to miscarry! Why now? I am 42.5 and I put this off and off and off due to sickness and I finally said I can not let these health issues prevent me from having a family. Time is out for me. Now if it turns out I can not get pregnant because I have not eggs left that are good...which may in fact be the case...then I have time to wait for donor eggs or adoption. My doctor is more concerned about a flare, then about the minimal effects that plaquenil might have.

I was only on 200 of the plaq and 15 of the pred. But I was on two BP meds as the pred raised my BP and sugar. These meds, plus massive Vit D supplements did not work well in an ivf cycle. My cycle was a disaster, so I weaned off all the meds, waited a few months and now I am trying again. Its probably my last attempt to have my own child since my egg supply is quite small.


My rheumatologist is very open to working with my high risk OB when I get that first +...

And about the hair thinning....yes it did start around the time I was pregnant (Feb of this year). and I miscarried in May so its been 7 months...

firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 11/20/2008 8:04 PM (GMT -7)   
I tried Plaquenil at first because my Dr. said this was his drug of choice for Lupus, and generally safe to administer during pregnancy, plus a low dose of prednisone was okay. However, I was allergic to Plaquenil-there aren't really other choices to treat a Lupus flare during pregnancy. I'm currently tapering off the Methotrexate to see if I'm in a remission and then we're going for kids. Good luck with your pregnancy.
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 3:41 AM (GMT -7)
There are a total of 2,733,991 posts in 301,165 threads.
View Active Threads


Who's Online
This forum has 151299 registered members. Please welcome our newest member, ABBear.
207 Guest(s), 1 Registered Member(s) are currently online.  Details
BreRosie


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer