Is there anything you can do to offset post-birth relapses?

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Is there anything you can do to offset post-birth relapses?

Postby Wonderfulworld » Wed Nov 21, 2007 1:48 pm

Hi all
some of you have wished me well on this pregnancy after a fair few miscarriages....currently 24 wks pregnant and doing ok. A bit of spasticity in my legs and the "blue spot of death" in my eye, but otherwise I'm ignoring the MS for the moment!
I know my rate for a relapse goes up by 70% or so after I give birth - MS always has THE most awful timing!

Just wondering if there's anything I can do to minimise the risk?
I have all my supplements lined up and ready to go - alpha lipoic acid, NAC, high dose b vits, vit d, etc.
My partner is taking 6 wks off around the birth so hopefully we can take turns at getting sleep.
But apart from that, is there anything else I can do?
:?:
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Postby gwa » Wed Nov 21, 2007 7:11 pm

It is my understanding that hormones are at play for pregnant women that go into remission.

After giving birth, the pregnancy hormone decreases, putting a person back to their former status quo.

It seems like the hormone stays around for a few months after giving birth.

You should be able to find some online research into the topic that will help you. Good luck and congratulations!

I wouldn't take vitamins and supplements without consulting my doctor. Some of the pills might not be good for fetuses.

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Postby ssmme » Wed Nov 21, 2007 7:35 pm

I didn't know I had MS before I had my triplets even though now that I can see in retrospect I definitely had all the symptoms I experience today only now a little more severely.

My pregnancy was great in the sense that during pregnancy I felt great. I know now that it was because my ms pretty much disappeared during those months. Of course, I ended up having excessive bleeding during delivery, needed 3 pints of blood transfusions, swelled up a bunch from the saline they were pumping into me prior to the blood arriving, had an emergency hysterectomy to stop the bleeding, then the day I was released from the hospital I developed Bell's Palsy. I was put on prednisone, acyclovir, and I can't remember what else but I had 6 days at home before my kids were discharged.

When the kids came home from the hospital my own mom was there to help for the first 6 weeks. I had begun looking for someone to help me because there is no way in this world I could do it myself (my husband was also there of course but he had to work to keep us afloat). I found a nice Mexican girl who came to my house 6 days a week for 10 hours a day when the kids were 7 weeks old. She fed the kids with me as they were on a 3 hour schedule day and night, and she did my laundry, and cleaned my house. I wish I could say that the babies were so cute, so little, so sweet but quite frankly I don't remember much other than being so tired I had a hard time keeping my eyes open. I slept in between feedings and don't remember much else. Six weeks post partum the ob/gyn put me on Zoloft and after about 3 months the Bell's Palsy cleared up but I never got my energy back.

My husband thought I had chronic fatigue syndrome and sometimes he thought I was just damn lazy until my diagnosis. With the dx, it all became clear to both of us what had been happening. He usually understands now when I say I am so tired if I don't go to sleep I will throw up. But sometimes he just wants the old me back that had a lot more energy.

When I look back, I wish I could take away the guilt I felt by wanting to just sleep and not caring too much about what milestones I might be missing because I was too damn fatigued to care. I didn't know it was the ms and the exacerbations that were making me so tired. My left side was extremely weak after the triplets were born but I didn't attribute it to anything more than a difficult delivery and a body that was out of whack from carrying all those babies. Maybe the prednisone and acyclovir kept it from getting worse. I just don't know.

My advice it to get any help you can, get as much sleep as you possibly can, leave the guilt behind, if you think it's an exacerbation have a plan of action in place with your neurologist to nip it as quickly as possible.

Good luck and I hope your delivery is picture perfect, everyone is healthy, happy and your baby sleeps 6 hours at a stretch each night.

Take care,

Marcia
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Life with new baby

Postby lyndacarol » Wed Nov 21, 2007 9:15 pm

After Marcia's experience, I'm not sure I can add much since I only had one child. Like MS, everyone's experience with pregnancy, birth, and a new baby is different. I, too, hope everything goes perfectly.

My thoughts: I was on an adrenaline high at first, but was at my lowest level of tiredness when baby was one month old. The interrupted sleep for nightly feedings really took me down. Take any offers of help you get! Even make and freeze a few easy suppers before baby arrives; at least plan easy menus. Sleep when baby does; let the other things go.

Try to enjoy every minute with baby--they grow up so fast!

I think diet is especially important at this time. As the resident "insulin believer," I think the postpartum MS exacerbation comes when the fetus is no longer there to use the mother's excess insulin for growth. I would recommend cutting back on foods with sugar and white flour (These have no nutrients and will only prompt the pancreas to produce more insulin.). Be sure to eat plenty of protein--meat, fish, poultry, eggs. Best wishes to you!
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Postby dignan » Wed Nov 21, 2007 10:15 pm

I don't know how the results of this study compare to relapse rates in untreated women for 3 months postpartum. It looks like breastfeeding was beneficial, although I'm not sure if the results were statistically significant.



A dose comparison study of IVIG in postpartum relapsing-remitting multiple sclerosis.

Mult Scler. 2007 Aug;13(7):900-8.
Haas J, Hommes OR.
Jüdisches Krankenhaus Berlin, Abteilung für Neurologie, Heinz-Galinski-Str 1, 13347, Berlin, Germany.

Untreated patients with relapsing-remitting multiple sclerosis (RRMS) have an elevated risk of exacerbation in the first 3 months postpartum. Pregnant patients (n =173) with RRMS and with at least one relapse in the two years before pregnancy were enrolled in this multinational, multicentre, randomized double-blind clinical trial investigating different doses of intravenous immunoglobulin (IVIG) treatment in the 6 months postpartum.

Group I (unloaded) received 150 mg/kg body weight (BW) IVIG on Day 1, then placebo infusions on Day 2 and Day 3. Group II (loaded) received 450, 300 and 150 mg/kg BW on Days 1, 2 and 3 respectively. Both groups then received 150 mg/kg BW five times in four-weekly intervals.

The ratio of patients remaining relapse-free during the first 3 months postpartum did not differ significantly between both groups (81.5% in Group II versus 75.6% in Group I). The ratio of relapse-free patients was independent of dosage in the subgroup of patients breastfeeding for at least 3 months (89% in Group I versus 90% in Group II). The mean annualized relapse rate (ARR) after pregnancy did not show an increased risk for exacerbation, but returned to prepregnancy level within 3 months independent of dosage. The treatment was well tolerated.

Pubmed link
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Postby Loriyas » Thu Nov 22, 2007 6:41 am

WW
Just an idea-
You could look into the UCLA study of estriol and copaxone to see how it is coming. I know you can even contact them as a friend of mine did a few weeks ago. They can't give you info on the current results of the study thus far but they may be able to give you information that may be helpful to you.

One of the neurologists here in my town does put some of his MS patients on estriol so if that is they way for you to go after you deliver you could perhaps find someone who would do that for you.

Anyway, that is just an avenue I thought of that you could explore now since you have some time. Hormones seem to have some relationship.

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Postby Wonderfulworld » Thu Nov 22, 2007 2:20 pm

Thanks Gwa, Marcia, Lynda, Dignan and Lori for your replies.

It's ok Gwa, I meant I'd lined up all my vits for after the birth, only taking prenatal ones at the moment!

Marcia, I'm in awe of what you've achieved with your 3 children. I'm feeling daunted enough with the idea of one, I can't imagine how tough it was for you struggling with an MS diagnosis, relapse, and triplets. Your advice is good, hard to adapt to because I'm used to pushing on myself and not asking or accepting help, but I realise I have to now.

Thanks Lynda too, planning ahead will be important, and sleeping when baby does. I only hope he will have my DH's temperament as he is a great sleeper! I am the insomniac and reputedly was like that from birth, so hope baby takes after him, not me! I often crave sweet food after a trauma/upset/operation, so I wil try to avoid this after the birth.

Dignan I have a neuro appt in Feb before I'm due and I will ask them abou the IVIG - have a feeling they don't do it, but it's worth asking.

Thanks Lori for the estriol info - interesting - I emailed the researcher in 2000 about her trial, that was during my "I know I can find a cure for MS if I just look hard enough phase". I got over that, but stayed interested in estriol....I will ask my neuro about it and will email UCLA too.

Good advice from all of you, many thanks for the replies
WW
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Postby Nick » Fri Nov 23, 2007 1:21 pm

WW

I think you're on the right track from what you have stated for prevention.

Indeed there is a phenomenon that occurs in pregnancy that can induce remission in women with autoimmune diseases. It has been documented that this effect occurs in the third trimester.

A study addressing this peculiarity analyzed the blood of pregnant women and found elevated levels of various hormones thought to be the effective agents of remission. The trial studied 18 women with normal pregnancies in their third trimester and during the early postpartum period.

They measured the content of pro-inflammatory cytokines IL-12 and TNF during the third trimester and postpartum. It found that during the third trimester pregnancy, IL-12 production was about 3-fold and TNF-alpha production was approximately 40% lower than postpartum values. Recently, excessive productions of IL-12 and TNF-alpha were causally linked to rheumatoid arthritis and multiple sclerosis.

The study also documented the increase in levels of the stress hormones cortisol, norepinephrine (formerly adrenalin) and 1,25 hydroxyvitamin D3. These hormones were two to three times higher in the third trimester than they were after the women had given birth.

It is a reasonable assumption that a drop in IL-12 and TNF can be responsible for remission of MS during pregnancy. You could also infer that the rise in cortisol, norepinephrine and 1,25 hydroxyvitamin D3, either by one or a combination of these hormones, are responsible for this remissive state of MS during pregnancy.

I believe the reason women with MS, who are pregnant and are able to achieve remission, is because they typically have low-grade symptoms induced by inflammation rather than serious disability caused by nerve damage. (There aren’t too many women with progressed MS who get pregnant, are there?) Should the pro-inflammatory cytokines be markedly reduced then this has an obvious impact on conditions where nerve inflammation comprises a majority role in the content of neurological impairment. Where there is nerve damage and inflammation then perhaps only minor improvements or stability can be hoped for during pregnancy.

DIRECT-MS is a proponent that vitamin D3 can play a crucial role in immunoregulation and its deficiency is one of the contributing factors in autoimmune disease. It is notable that 1,25 hydroxyvitamin D3, which is final hormone derived from vitamin D3 intake (either by ultraviolet radiation exposure or pills), is deficient in PwMS on a daily basis throughout the year. It has also been documented that vitamin D3 inhibits not only IL-12-generated IFN-gamma production, but also suppresses TNF.

Perhaps it is all three hormones or only two or one which induce remission during pregnancy. It has been shown though that vitamin D3 by itself can induce immunosuppression. You can easily obtain D3 from either sunshine or inexpensive supplements while increasing cortisol and norepinephrine would likely require taking drugs. Vitamin D maintenance (an internal level of at least 100 nmol/L or a daily intake of 4,000 IU/d ) is safe, inexpensive and easily implemented.

You can also derive some vitamin D and heaps of anti-inflammatory, essential fatty acids from fish oil. If you are going to breast-feed think of the benefits these oils will have upon your infant in addition to benefiting you in your struggle with MS.

An article in the Canadian news last month addressed recommended amounts of vitamin D for pregnant and lactating women. While it it not an issue related to MS it certainly is relevant.

Experts prescribe massive increase
of vitamin D: Nursing, pregnant women need 10 times more than current recommendation, says Canadian Paediatric Society


SHARON KIRKEY
CANWEST NEWS SERVICE

A move to feed pregnant and nursing women 10 times more vitamin D than they get today may still not be enough to protect their babies from chronic diseases, especially in obese women, a top expert says.
The Canadian Paediatric Society is recommending pregnant and lactating women consider taking 2,000 IU (international units) of vitamin D daily, especially during winter, to protect their babies from a litany of illnesses later in life.

The current Health Canada recommendation is 200 IU a day for adults under 50 — including pregnant and nursing mothers.
Dr. Bruce Hollis, professor of pediatrics and director of pediatric and nutritional sciences at the Medical University of South Carolina who has studied vitamin D in humans for 30 years, called the society’s new position statement “a remarkable change.”

But he said many women of childbearing age, especially in Canada, are “absolutely deficient” in vitamin D. “To say (2,000 IU) daily will replete everybody probably isn’t totally accurate, and I say with confidence it’s not enough to ensure breastfeeding infants get enough (vitamin D) through human milk.”

Vitamin D deficiencies in early life have been linked with an increased risk of small babies, asthma, diabetes, autoimmune diseases such as rheumatoid arthritis, multiple sclerosis and inflammatory bowel disease, dental malformations and the development of certain cancers.
In two U.S. government funded studies, Hollis is studying vitamin D supplementation of up to 6,000 IU daily in nursing women, and 4,000 units per day in pregnant women. So far “not one single adverse event” has been observed in women on the highest doses, he said.

The pediatric society says even experimental doses of up to 10,000 IU per day for five months in pregnancy didn’t lead to levels in the toxic range.
After years of telling people to screen out the sun, doctors are finding a host of reasons to load up on the “sunshine vitamin.”

First came cancer: In June, the Canadian Cancer Society for the first time recommended adult Canadians lower their cancer risk by taking 1,000 IU daily. The vitamin has been linked with a lower risk of cancers of the breast, lung and colon.

Now, pregnancy: Vitamin D deficiency in mothers and babies continues to be a problem in Canada, particularly among aboriginal women, the pediatric society says, and infants under one are especially vulnerable if they are breastfed.

Hollis said vitamin D is important for brain development and to build tolerance against autoimmune diseases. It also protects the mother from uterine infections that can lead to pre-eclampsia — a common disorder that causes high blood pressure and can lead to poor fetal growth and fatal complications in moms and babies if not treated.
Oily fish such as salmon and sardines contain vitamin D and the vitamin is in fortified milk and margarine. But food alone can’t provide sufficient vitamin D, especially in babies.

A daily vitamin D supplement of 400 IU per day has been recommended for breastfed infants in Canada for decades, largely to prevent rickets, 104 confirmed cases of which were reported in Canada between 2002 and 2004.
But the pediatric society says the emphasis now goes far beyond the debilitating bone disease, which requires just a small dose of vitamin D. Severe asthma in three-year-olds and an increased risk of Type I diabetes have been linked to low vitamin D status during fetal life.
Still, Health Canada is refusing to budge, calling the pediatric society’s new recommendation “premature” and warning of health risks with taking too much vitamin D.

“They’re the only ones who seem to be saying it’s premature,” said Dr. John Godel, principle author of the new recommendation and professor emeritus in pediatrics at the University of Alberta.

He said Health Canada made it clear at a meeting two weeks ago they were “quite loath” to recommend pregnant and nursing women boost their vitamin D intake 10-fold.

Health Canada has set the upper tolerable limit for adults at 2,000 IU a day from all sources of vitamin D, including milk and supplements.
Godel said “there is a lot of evidence” that even 2,000 IU daily isn’t enough, but that “even at 2,000 we found we were in trouble with Health Canada.

“If we went to 4,000 (IU per day) right away we might run into problems and besides that, the evidence wasn’t all in at this time.”
The pediatric society recommends total vitamin D intake from all sources during the first year of life should be 400 IU per day in full-term infants and 200 units for premature babies, with an increase to 800 IU daily between October and April north of the 55th parallel (about the latitude of Edmonton).

They recommend pregnant and nursing women have their blood checked periodically to see whether they’re getting sufficient vitamin D. Hollis said that, for reasons that aren’t clear, obese people need much more vitamin D to maintain their levels.

As well, he said every breastfeeding infant “absolutely needs a vitamin D supplement” even if the mother is supplementing herself with 2,000 IU per day.

He recommended vitamin D3, or cholecalciferol, the kind produced in the skin in response to sunlight.
The pediatric society says infants and children should be exposed to sunlight for short periods, probably less than 15 minutes a day.


Good luck!

Cheers
Nick
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Postby Sandrine » Sun Nov 25, 2007 2:43 am

Dear Wonderfulworld,

Dignan I have a neuro appt in Feb before I'm due and I will ask them abou the IVIG - have a feeling they don't do it, but it's worth asking.


my doctor also told me that IVIG are a good possibility after giving birth (although I have no plans like that at the moment :lol: ). I know a woman getting IVIGs for another reason and she says it's okay, she's fine. By the way, in Germany IVIGs as an MS treatment are only for "exceptional cases", "off-label use". (e.g. breastfeeding women).
Best wishes,
Sandrine
Last edited by Sandrine on Tue Nov 27, 2007 4:05 am, edited 1 time in total.
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POPART'MUS Trial

Postby Shayk » Sun Nov 25, 2007 7:59 pm

WW

Sorry to be chiming in late here but there's also the POPART'MUS Trial (Prevention of Post Partum Relapses With Progestin and Estradiol in Multiple Sclerosis) that you might want to consider as well.

Per their info,
The POPART'MUS study is a European, multicentre, randomized, placebo-controlled and double-blind clinical trial, which aims to prevent MS relapses related to the post-partum condition, by administering high doses of progestin (nomegestrol acetate), in combination with endometrial protective doses of estradiol.


Unfortunately I don't know where besides France the trial is actually taking place in Europe. When I contacted them last summer they were anticipating full enrollment around July 2008.

Wishing you all the best :)

Sharon
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Postby Wonderfulworld » Mon Nov 26, 2007 10:27 am

Thanks Nick, Sandrine and Sharon.

Nick to be honest, I do think Vit D3 has a lot to do with MS, but I am terrified of upping my dose beyond the low 12.5 ug that claims it's 250% RDA for pregnant women in my prenatal vits - I'm just so cautious that something might go wrong like the calcuim/mangnesium/vit d balance would go out of synch...I dunno. I'm not a scientist and I'm scared to experiment when I'm pregnant after losing so many other pregancies. But there was only rain in Ireland this summer, and I am sure my vit D stores are low....it's worrying.

Will def ask about IVIG Sandrine, my neuros tend to be very conservative but there is one guy on the team that is a bit more open-minded.

Sharon that's a fascinating Phase III trial - pity it's just France at the moment, and in July I'll be 4 months after the birth (fingers crossed!)...but really interesting, can't wait to see some results from that.
Thanks fro your replies
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