slow return of neuro symptoms

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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/16/2007 2:23 PM (GMT -7)   
I have noticed a slow return of some of my neurological symptoms. Since it has taken months instead of weeks from my coming off imuran I am positive we had a really good remission going. I also know this means I am slowly losing my remission. The memory problems are returning- though right now they are no where near as bad as they were before. I am also noticing the random sensations returning (like something is crawling on or under my skin and random areas of burning/itching/horrible pain). The worst part is my high risk OB wants me to wean off the prednisone beginning in January. I do not know how I can manage that with what is happening. The reason he is so insistant is that he keeps saying being on steroids places me at higher risk for premature rupture of membranes. I don't want the baby born too soon, but the thought of letting the lupus have free reign over my brain and nervous system is terrifying. My liver function tests were normal so that is good, if they begin to rise it means I am either in or heading into a full flare. I wish I knew what to do. My rheumy is out until after the first of the year, so I have to wait to ask her what to do and if there is an alternative to pred that can be used in pregnancy. The imuran kept this all under control but isn't recommended in pregnancy. I am really scared. I want this baby so much and if I lose my remission and the lupus comes back in full flare I could end up losing the baby or having it way too early.
 
I just needed to share my fears and see if someone could offer any helpful advice. I know I had 2 healthy babies while in full flare and 2 more who had a genetic metabolic issue that killed them, but I also had 4 miscarriages. I do not think I could handle another loss. Thanks for listening.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/16/2007 9:19 PM (GMT -7)   
Hi Redrose,
 
I was under the impression that Imuran was safe to take during pregnancy?  That is what my high risk gyno told me.  I've read that as well.
 
Yes, you will lose your remission if you have to come off of your Imuran and prednisone.  Those are crucial.  I'm very surprised that you are having to come off the pred too.  That just doesn't sound right.  I'd get a second opinion on all this.  It goes against everything that I've been told.  "If" I were to get pregnant, I'd be staying on the Imuran and prednisone, but I'd have to change my blood thinner to something else, and that's it.  Oh, I'd be on strict bed rest too. 
 
I really think you need another opinion on the medication stuff.  I'm sorry you're dealing with this Redrose.  I hope it all works out well for you.  Please let us know how you're doing okay.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/17/2007 7:35 AM (GMT -7)   
We traded Imuran for Prednisone back in late July because the high risk doctors had a fit about Imuran and said I was already at high enough risk for the baby having problems. I only take 10mg of pred now and they want me off that too so my water doesn't break early. I am losing this remission way too soon for this baby and I am rather angry about it. If I go into flare I am facing a very hard fight to stay pregnant to even 28 weeks let alone 35-36 which is the real goal. They say if I have to deliver early that they want me a minimum of 32 weeks as the baby has a 98% chance of having no negative impact beyond 6-8 weeks in the NICU before coming home if I deliver at the hospital that handles premies.

I may ask if they would be okay with going back on Imuran so I can come off the pred in January when I see them on Wednesday. Imuran at 100mg controls my liver issues and the neuro stuff too. I will hurt more but darn it all I can deal with that if they will agree to stop the damage to my brain. The only saving grace of being trapped in this body is my brain, if I lost that I am not sure all the pain would be worth it. I am daily in horrid pain, they have reduced it significantly but we can't seem to get it completely under control. There is just too much damage o some areas, like my spine- we got that down to half of what it used to be which means I can still walk even though this is winter but the pain left still makes walking torture yet I insist on walking when I can because I know there may come a day when I won't be able to anymore. No one knows what is wrong with my spine, outside of the two poorly healed compression fractures and a single bad disk in the lower spine and none of that explains the pain. But, my RA has been acting up this winter, likely because I can't take any NSAIDS because of the pregnancy, and my hands are hurting today.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/17/2007 10:12 PM (GMT -7)   
Hi Redrose, I have no knowledge of having a baby with your health issues. I just wanted you to know that coming here and talking about your fears is a really good thing to do. You need to releive the stress as much as possible. I do agree with Ginny though I think you need to see another doctor just to get a second opinion. This is your body and your baby and you need to be certain that you are doing everything that you need to be doing.
praying for you and your family
love ya
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/18/2007 6:34 PM (GMT -7)   
Thanks to both of you. I have put an update up and figure this thread will die out.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 12/18/2007 7:04 PM (GMT -7)   
hi Redrose,
i have been talking to my docs since my transplant last year, and they said that with my meds i would change the cellcept to imuran (since you can be on it when you are pregnant) and we are still trying to figure out what we will do about the diamox (for my pseudotumor cerebri), and i was also told because we did try before my transplant and i was on plaquenil that you are not suppose to be on it when you are pregnant because the plaq is not a medication you can be on pregnant ( i noticed on your signature that you are still on it) also prednisone is definately ok to be on when you are pregnant because it is a chemical that our body makes naturally anyways and we just take a synthetic form of it through the predisone. and i know that when and if i get pregnant the docs (all of them) said that i would definately stay on the prednisone and even the prograf since the benefits of the medication out weights the possible and smaller risk to the pregnancy and the imuran would also replace the cellcept which works as both an antirejection and a lupus drug for me. i absolutely dont mean to alarm u and i would check with your rheumy, if possible call their office and see if you can get a message to your rheumy or possibly talk to another rheumy that is taking his/her place right now. i am by no means an expert on this subject, these are just my opinion and what i have been told, but being that i have been researching and speaking with my docs about it at every appt with every doc i see related to my lupus i would definately make sure that you on and off the correct meds. hope you get some answers soon. you, your baby and your family are in my prayers.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/18/2007 7:50 PM (GMT -7)   
Plaquenil is safe in pregnancy, in europe it has been used for decades without problems. I have fully researched the plaquenil thing and so has my rheumy, my high risk OB, and the geneticists I am working with. The regular ob said imuran is a big no-no but I am going to ask the high risk ob and geneticist. My rheumy said imuran was safer than most people think. Ironically prednisone is kind of dangerous because it increases the risk of premature rupture of membranes.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone

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