Lupus out of remission, may have to wean 16mo

[ErynneM]

This is a long post; I apologize.

I was diagnosed with Systemic Lupus when I was 15. At 25, I was declared in remission, and we decided to take advantage of it and have a baby. I have been exceptionally lucky - I have remained in remission through the entire pregnancy and for 16mos of my son's life.

Now, he is 16.5mos old and my SLE is back. Full force. I went in to see my rheumatologist today because my hands are too sore/swollen to hold a pen or pencil and write, and my knees to swollen for me to crouch down onto the floor to be with my son or to do my parttime job (i'm a dog trainer), and my shoulder hurts so much, it's waking me at night.

My doctor said I'm worse than she's seen me in years, and I have been put on a pulse treatment of Prednisone. I will be on it for about a month, and she says at the end of the month, she wants to put me on CellCept (mycophenolate; Hale's lists it as an L4).

I am hoping to avoid CellCept in a month. I am willing to change my diet as much as possible (more raw fruit/veg, raw smoothies daily, etc) and do everything in my power to nudge this symptom flare away and allow me to continue nursing my son, but I'm terrified that in one month, I will be told to wean my little man.

He still nurses multiple times every day. He nurses upon waking in the morning (we cosleep), and nurses anytime he gets hurt or frustrated, and nurses to fall asleep for naps and at night. He also wakes at least once or twice most nights to nurse.

I figure the best place to start would be night weaning. I really, REALLY do not want to do this. I know in my heart that the best thing for him is to nurse until he's at least 2yr, but my doctor says the risk of organ involvement in SLE is too high and so I have to wean him.

I have read what Hale recommends when CellCept is indicated, but I won't see my doctor again for a month to ask her if I could be put on cyclosporine (an L3) instead. So I'm going on the belief that in roughly a month and a half, I won't be able to nurse my little nursling anymore.

Please give me some tips for getting the flare under control WITHOUT having to resort to weaning my still very-needful-of-nursing toddler.

Thank you so much for reading this, and thank you for any advice you may have.

- E

[Casha'sMommy]

I responded in the BF forum but thought I'd try to catch you here too.

What are you on now? And, can't you and your rheumy agree to watch your kidney, thyroid, etc numbers every couple of months? That's what I do and I'm currently on Prednisone and Plaquenil.

s

[ErynneM]

She started me on a pulse treatment of Prednisone today. 4 pills for 5 days, then 3 pills for five days, then 2/5days, 1/5days, and 1/2 for 5 days.

At the end of that, she wants to reassess my condition, and see where I'm at.

I can't take Plaquenil - I had an allergic reaction to it.

- E

[Casha'sMommy]

I completely understand the concerns regarding Prednisone, it's terrible stuff.
What are your kidney, thyroid, etc numbers like?
I've got some kidney issues and my rheumy is threatening 60mg Prednisone if my kidneys get worse. He doesn't want to introduce Cellcept, say's it'll be even harder on my kidneys. Interesting the differing opinions between rheumy's. Although, I am able to take Plaquenil so I'm weaning off the Prednisone as we speak. I'm currently on 5mg daily with an order to reduce to 2.5mg daily later this week. It's taken me months to get to this point though.

Hang in there and s s

[ErynneM]

Casha'sMommy: I'm not sure of my #s. I've been in remission for so long, we haven't kept a super-strict watch over my bloodwork. I think I've only had a few draws since Jacob was born in April2009. Although I imagine I'll be getting one next month when I go in to see the doctor.

I've been on CellCept before, and I had a lot of success on it. In fact, CellCept was what put me into remission the first time around. It just works with me, and the newest research out shows that it's the best drug for most SLE patients. But it's a darn dangerous drug, especially for babies.

I'm so hoping that she'll agree to at least TRY me on Cyclosporine for a month, and see if it works. It would, at the very least, give me that much more time to nurse my little man. I'm up at 4am because he has woken me - for the third time tonight - to nurse. I tried just petting his back and he was having none of it - grabbed my shirt and pulled it down, fussing the whole time. I hate Lupus. I hate that it's doing this NOW, rather than waiting a few more months to when he might be self-weaning from being a busybusy toddler anyway (he nurses less during the day now than he did three or four months ago).

It is just an awful situation. Neither he nor I have any desire to wean, and trying to figure out how to do something you have no desire to do is just torture.

- E

[mbravebird]

I don't know much about Lupus, but was wondering what alternative therapies you've tried? I'm specifically wondering if you've tried acupuncture. My memory is that it has helped some people with Lupus.

It sounds like, for the nursing aspect, you need to get your symptoms under control enough to not have to take the "big guns" meds, right? I'd say acupuncture is worth a try. It's amazing stuff.

[Casha'sMommy]

I'm so sorry you're going through all of this. s

I don't know the first thing about weaning babes. All of my 5 weaned themselves between 18mo and 2yo. This is why I felt that maybe you could come up with an alternative plan and shoot for a change in meds in 2-4months, if necessary. I'd think any rheumy worth teaming with would understand that sometimes you have to compromise and come up with alternatives.

Since being dx'd with SLE, etc I've had to learn to treat my care as if it were a homebirth. I've taken charge and work with my dr's as a team along with me. We all research things and then come together to discuss.

Please keep us posted on what's going on.

[subtlycrunchy]

Oh mama, hugs to you! I don't have lupus, but had some other health issues that I thought would derail bf-ing, but I managed (at pretty much the 11th hour) to find ways to keep going. Have you looked into natural therapies? Here's a good article on lupus that comes from the Women to Women site (great resource for holistic health info) that does include natural alternative for lupus treatment. Lessons from lupus

Good luck to you! Have you discussed the bf-ing with your doc?

[Casha'sMommy]

Very interesting article although I have to say that I'm not certain the author truly knows all that much about autoimmune disease.

[ErynneM]

I will look into acupunture. I've heard in two or three different places now that it has really helped people with Lupus, and I think it's worth at least giving it a go. I just have to find a good place near me, that doesn't charge an exorbitant amount.

The article posted lists some of the things I'm already doing... and, actually, as far as SLE goes, things like cabbage and brussels sprouts, ime, cause more discomfort and pain. But it did make me think maybe I can try to get more natural VitD on top of what I take as a supplement. I just have to be cautious - sun exposure and Lupus don't mix. -_-



- E

[MountainMamaGC]

16 months is a long time mama and if you have to wean you are still a successful BFing mama. I have crohns and I wanted to make it to 2 years so badly. I was in denial about how bad I really was and I put off getting my medication. I tried so hard to treat it natually, diets, herbs, you name it, I tried it. The flare got progressively worse. It affected my parenting. I was in pain and I had no patience for my daughter. By the time I had a scope done I was so close to needing surgery and my flare was severe.

I did make to 2 years but I also lost a lot of quality time with my DD. If I could go back I would wean and start meds sooner so that I could take back all those times I lost my patience with DD.

I am not saying you should not try the natural route but if you find its not working, medication does not mean you are a failure. If anything natural methods work better once you have gotten yourself out of the danger zone. Alll of my remissions have been medically induced but maintained using natural medicine and diet. The longest remission being 4 years.

Its so hard having an autoimmune disease. Once you have one its hard to get your body to stop attacking itself. Its easier to prevent it from happening in the first place than to cure yourself. I compare it to turning a pickle back into a cucumber. Hugs mama, I know how hard of a road it can be.

[ErynneM]

I know how important it is to stay alive and thriving... I'm REALLY hoping that the Prednisone will stop this flare, and maybe I can avoid totally weaning.

I'm going to try nightweaning, and if worse comes to worst, I will wean him in the daytime once it's obvious I MUST. Right now, I'm not willing to believe I HAVE to.

- E

[WuWei]

Start here to strengthen your immune system: Where to start? Help 101

Pat

[ErynneM]

Lupus is an immune system in overdrive... strengthening it would not actually do me any favors. When in active SLE, I'm not supposed to take things like gingko and echinacea because they can cause a symptom flare.

- E

[ASusan]

Originally Posted by ErynneM

Lupus is an immune system in overdrive... strengthening it would not actually do me any favors. When in active SLE, I'm not supposed to take things like gingko and echinacea because they can cause a symptom flare.

- E

I hear you about the immune system in overdrive, but I do think some of the things Pat (and others) suggest in that thread would be helpful. I very much think my lupus was toxin/detox/liver support related. And I also think that fish oil/cod liver oil is good for inflammation problems like lupus.

[WuWei]

Originally Posted by ErynneM

Lupus is an immune system in overdrive... strengthening it would not actually do me any favors. When in active SLE, I'm not supposed to take things like gingko and echinacea because they can cause a symptom flare.

- E

It is all about balance. The immune system is over-reactive when the body is over-taxed with toxins it can't process, food proteins, food chemicals, heavy metals, environmental toxins, antibiotics, pharmaceutical chemicals, etc. Balancing the immune system "strengthens" it, just as eliminating toxins "strengthens" your ability to handle illness, diseases, other toxin loads.

Pat

[ErynneM]

Pat - makes sense.... I will definitely check out the thread you linked in detail, and see if there's anything in it that I can add to my life (or subtract from my life, for that matter).

I know I was doing better when I ate a lot of raw fruit/veg, and now that I'm eating a much more SAD (albeit one with more whole foods in it), I suddenly am out of remission. -_-

- E

[WuWei]

Preformed vitamin A (meat products, especially liver), B-vitamins (especially food folate!! - beans, greens, legumes and liver), vit C (raw fruits and veggies), vit D (Sunshine!!), magnesium (most Americans are deficient, magnesium is critical to 350 biological processes), zinc is essential for detoxification, digestion and immune health (many are deficient), Omega 3 fatty acids (cod liver oil, cold water fish, especially wild caught, Alaskan salmon - not farmed "Atlantic salmon"). Egg yolks and Romaine lettuce for biotin. 2 Brazil nuts for selenium (binds toxins). Sea salt for minerals. Lemon in water is alkalizing and healing for the body. Bone broths for glutathione (master detoxifier) and minerals. Nettle leaf infusions are great for minerals. Whole food probiotics for balancing the gut microbials.

World's Healthiest Foods is a wonderful resource: http://www.whfoods.com/foodstoc.php

Essential nutrients: http://www.whfoods.com/nutrientstoc.php


Whole foods heal.


Pat

[nmelanson]

Hi ErynneM,

I agree with Pat's post. I have Myasthenia Gravis and have kept in in check for more than 6 years. When I was diagnosed I immediately went to a naturopath and did a series if Unda homeopathic drops to cleans different organs and systems... I think cleansing is crucial (and you can do this a number of different ways), also start to eliminate foods that can cause inflammation. Wheat, dairy, sugar, too much vegetable oil - our diets often don't have the right Omega 3 to Omega 6 balance. Also, maintaining an optimal pH balance helped me too... and eliminating the inflammatory foods will help this. I take greens, fish oil, probiotics and a whole food vitamin regularly. I've also seen a lot of supplements lately that look amazing for inflammation reduction. Check out New Chapter's website.

You CAN take your health into your own hands. Remember that stress causes inflammation (and exacerbated my symptoms), so try to be positive (I know this is hard!).

I weaned my son at 23 months (I needed to do a cleans and did'nt want DS to get all the released toxins). Whenever he would ask for milk I told him he drank it all... and tried to make it fun; "uh oh, it's all gone... you must have drank it all because it was so yummy". To help with engorgement I drank sage tea. Not saying that you have to wean, but if you do (and 16 months is amazing!!!), it doesn't have to be terrible. If you don't want to wean yet, i suggest changing your diet to eliminate the foods that cause inflammation to start. I would drink nettle and dandelion root tea 2x daily for a few weeks for a gentle cleanse - but of course check with your helth care practitioner to see if that would be all right for you. Change doesn't happen over night, but you can slowly rebuild balance in your immune system.

[WuWei]

And I agree with nmelanson, avoiding the most inflammatory foods: wheat/gluten, (especially pasteurized) dairy, GMO-corn, GMO-soy will provide HUGE benefits. Don't have to be perfect, we just avoid, not eliminate. At home it is easy, out, harder.

Also the vegetable oils are very difficult on the inflammatory process, as mentioned the Omega 3:6 ratios are critical to immune health. Omega 6 = corn oil, soy oil, canola oil, sunflower oil, safflower oil. Increased butter, coconut oil, lard, palm oil, olive oil, cod liver oil, fatty fish will help rebalance the fatty acids.

Nigella sativa (Black seed oil) is amazing too!

Pat