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SpoonGoddess89
New Member


Date Joined Feb 2016
Total Posts : 4
   Posted 2/4/2016 12:22 PM (GMT -6)   
Hello! I am new to the HealingWell community. I have been diagnosed with Systemic Lupus since 2009, but after the birth of my daughter two years ago I started progressing quickly. Before I got pregnant I had gained immense control over my system, coming off of nearly every medication I was on before. I treated naturally and with Chinese medicine and did splendidly! During pregnancy, after 3 miscarriages, I went into full remission and stayed there until she was about 6 months old. I developed numbness almost constantly on the left side of my body, more frequent flares, my thyroid went from perfect to non functioning. Started getting my thyroid back in order and began having Lupus flares rendering me partially paralyzed from the waist down during the flare. I went to my Rheumy with this and he brushed me off, sending me to a Neurologist who also brushed me off. Claimed I just had a couple of bulging discs and needed physical therapy was all. PT made it worse. I FINALLY found a new Rheumy after nearly two years of battling this. He went straight to my spine. We did a spinal tap along with brain SPECT and several blood work ups. We got answers, not that I like the results. All these attacks have been directly hitting my central nervous system for this long. He described me as having "severe neurological deficits and nerve damage" left untreated for far too long. I previously took Plaquanil, prescribed during pregnancy to keep me from throwing clots. I am still on Plaquanil, but he is putting me on Imuran. I started my first two pills this morning. I am starting at 150mg a day. He wanted to put me on a heavier medication, possibly Cytoxan, but I watched my mother go through that and begged him to start me on the less evil of all the evils. I am very nervous. I am an active and adventurous person, I have a tiny little amazing daughter depending on me to be a good and healthy mommy and a husband who loves me no matter what. I do not know what to expect on this treatment. We want another baby eventually as well. Does anyone out there have words of encouragement through this? I do not want to hear about how horrible your experience was on this treatment, I would really like to hear success stories. I need some positivity to get me through.

Thanks so much!
Spoonie since 2009. Systemic Lupus with CNS involvement, Hashimotos Thyroiditis, PCOS.
Follow my story on spoongoddess.wordpress.com

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 2/4/2016 12:46 PM (GMT -6)   
Welcome to Healing Well, Spoon Goddess. So sorry that your Lupus has been sneaking up on you "behind your back", so to say.

I think you made a wise choice by not going straight to Cytoxan. I think of our medications as being in "tiers".

1) Plaquenil
2) Prednsione
3) Imuran, Cellcept, MTX
4) IVIG, Benylsta

Haven't heard of them using Cytoxan for most Lupies, but from what I know of it I'd put it in Tier 4.

Of the meds Imuran, Cellcept, and MTX - it seems to be hit-and-miss which of these 3 will work for each of us, it's very individual. I personally didn't see any improvement with Imuran (no bad results either), but others get remission. For me, Cellcept was a miracle drug. I think of these 3 fairly equally, so I count my success with Cellcept as a success for your drug, Imuran.

I had joint and muscle stiffness, pain and inflammation. I had almost daily GI distress. And worst of all, I had significant cognitive involvement. (Short explanation - loss of about 15 IQ points.) I couldn't carry on a conversation, I'd loose my thought in the middle of a sentence. I couldn't follow a 20-minute sitcom. Certainly couldn't do my work as a computer designer in a high-tech industry. Cellcept, within about 18 months, turned all that around. I have been mostly flare-free for several years now.

Other people have gotten similar results with Imuran, Cellcept, MTX -- hopefully Imuran will work for you, if not try Cellcept or MTX.

Best wishes, and keep us posted!

On another note, I've recently been having more and more right side issues -- they seem to start mid-back and render my right side very weak - hip, knee, and ankle, with foot tingling. I have a rheumy appt coming up and I wonder if I should ask for an investigation such as you have just had. What are your suggestions?

Thanks so much!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/4/2016 3:06 PM (GMT -6)   
Glad you found us.

I'm still in the first stages of Lupus medications, plaquinel. I also take gabapentin and Leflunomide. It seems to work well for me. Unfortunately, I'm allergic to MTX, but it will probably work well for you.

I'm hoping that the medication will help your flares.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

SpoonGoddess89
New Member


Date Joined Feb 2016
Total Posts : 4
   Posted 2/4/2016 10:39 PM (GMT -6)   
@Lynnwood thank you for words of encouragement! It means so much to hear. I'm only one day in and I'm nauseous but not to the point of being unbearable. Hoping I don't lose hair. I cannot take prednisone in anything other than a ten days pack if my kidneys start to act up. It causes depression, anxiety, sleep deprivation, loss of motivation, and even more pain than was present before. I will never take it again as treatment. skull

I would insist on deeper investigation into one sided neurological symptoms. They did a Nerve conduction study first to test surface nerves. When that came back with normal results he went into the spine and brain. While a spinal was VERY hard to recover from, it was worth it to know finally what was really happening. If we had left it, my brain function would've suffered more than just the memory issues I have now. Little advice, if they go for a spinal, just request a blood patch right then and there while they are in the site already. 85% of punctures lead to blood patches within 5 days, and being a spoonie raises those chances. I didn't know that going in and ended up leaking fluid for days and being unable to stand or sit upright for a week. Had to be taken in for blood patch operation which induced a flare.

I will keep you all posted, and please keep me posted on your findings as well!
Spoonie since 2009. Systemic Lupus with CNS involvement, Hashimotos Thyroiditis, PCOS.
Follow my story on spoongoddess.wordpress.com

kateelizabeth933
New Member


Date Joined Feb 2016
Total Posts : 7
   Posted 2/17/2016 6:30 AM (GMT -6)   
I'm really sorry about your lupus getting worse. Lupus patients either go into remission with pregnancy or get worse just depends. The thyroid issues aren't surprising because after you had the baby it probably had no idea how to adjust. plaquenil Is a really good drug it works for a lot of patients but it's kinda the first line of defense imuran I can't speak about but cytoxn is a really wonderful drug for some lupus patients. And I totally get what you're saying I inherited lupus from my mom too and I watch her struggle with methotrexate for years and when you're faced with it you just have this overwhelming fear you're going to be just like your mom and your kids will see like that and it sucks but it also sounds like for you your quality of life isn't great right now and you want to be able to do what you were once able to do so sometimes you have to take the bigger risks for the bigger reward. I'm 22 and I've been taking care of my mom since I was ten and my dad left. I've seen everything she's been through and then boom I get told last year I have it to. It's a really cruel disease and excuse my language but it mind ****s you. One day you think you can handle it the next you feel close to death. The other option is plasmapheresis. But that can get messy but it helps a lot of people with no side effects. Good luck sweetie..god bless.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 2/20/2016 9:53 PM (GMT -6)   
Interesting that you all mention your lupus affects you on only one side, my son also has lupus, he is left handed, I am right; I kid you not we can literally draw a line down the middle of our bodies and tell you where the pain starts and stops. Mine is right sided, his is We were both diagnosed with SLE, never knew a thing other than we also had central nerve involvement really. That is until my son moved to Colorado to pursue his masters in immunology and started seeing a Rheumy there how told him he had NPSLE = Neuropsychiatric Systemic Lupus Erythematosus! Now it makes much more sense. My son became so intrigued he wrote his thesis on this topic and published his paper.

He and I both started on the base meds MTX, Immuran, did fine, just they eventually run their course as your disease progresses I guess. I went through them quicker than Ryan. I have been on Cellcept since 2006 or so and now have added Arava, Ryan is now also on Arava. He and his wife had their 1st child in December; (my memory is poor I apologize) I believe he was on Immuran when they conceived. He did work with his specialist to make sure his medications were safe for conception and to ensure his sperm would not be damaged in anyway to cause a birth defect. The doctors did make some medication changes but it was possible to control his disease and continue on with their dreams to become parents.

My grandson is 2 1/2 months old, happy and healthy. I realize it is different because you would be the mother carrying the child, but I do think it is possible and encourage you to speak with your Rheumy, OB and Neurologist.

Best of Luck to you. I know all to well what it's like to be a young parent dealing with this and unfortunately also I know what it's like to be a mother watching you child live with this cruel disease. My heart goes out to you.

Hugs,
Melissa

Wanted to clarify - when I say we knew nothing other than we had issues with the central nerve or nervous system, I simply mean in that area of our Lupus. Trust me I've had lupus for 20 years, I know just about every way Lupus can affect the body. I've done A LOT of reading and like many of you who got sick and diagnosed long before the wonders of these amazing support groups : )

Post Edited (Melissa D.) : 2/20/2016 8:01:59 PM (GMT-7)

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