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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/4/2012 8:23 AM (GMT -6)   
Hi everyone,

I have been away from the forum for quite sometime. I do lurk and read the posts, but I've been so tired all the time. For the past year I have spent a lot of time trying to recover from an accident that happened last year.

I nearly died last year and ended up on life support. I had regular pneumonia, then I aspirated vomit and needed to be put on a vent. We found out while I was in the hospital that I had a problem with my heart and nearly lost my foot. I guess I am trying to give some background information.

I've had lupus a really long time. It took the Doctor's 14 years to DX me. I believe that is the reason I'm so ill is because I was left untreated for so long. In 1995 I was Dx'd with Fibro, 2006 I was Dx'd with RA, and then in 2008 I was Dx'd with MDS (its a form of blood cancer, it's also known as pre-leukemia).

I have been on steroids for over 11 years now. I've tried all the medications for Lupus except for gold injections and benlysta. I am currently on 25 mg of prednisone, plaquenil, and injectable methotrexate. I think the metho isn't working for me any longer, so my Rheumy wants me to start on the benlysta. Has anyone on the forum taken this? I've read about the side effects and they are pretty scary. I would appreciate any feed back if you have tried this medication.

I will do another post about other issues so this won't get any longer.

Hugs,
Barbara

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/4/2012 12:34 PM (GMT -6)   
I know what MDS is, my mother has it. Do you do procrit shots or Dacon IV injections?
My mother's doctor says it's not cancer but it's treated like cancer.

I've never tried benlysta.
Joy

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/4/2012 3:15 PM (GMT -6)   
Hi Joy,

My Hem/onc doctor has said my MDS has advanced to the malignancy stage. I do procrit and usually get blood transfusions about every 6-8 weeks. My Dr and I have discussed the possibility of a stem/bone marrow transplant. He feels as long as my counts continue to hold he'd recommend against it.

With all my illness I feel so bad and my pain is a 8 out of 10 today. I would take my dilaudid for break through pain but my hubby is having a b-que for some of his friends from work. So I guess I will ride it out till they are gone.

I hope your Mom's MDS doesn't progress to a malignancy like mine. I know I feel helpless and I've let my family down a lot. My daughter found me last summer and the Dr's told her and my hubby that I may not make it. I missed her high school graduation. They have to wait on me and I feel like such a burden. Hubby and I just celebrated our 27th anniversary I honestly don't know what I'd do w/o him.

Hope your feeling better, I read you were having a flare. Take care and I hope you can be pain free today.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/4/2012 6:18 PM (GMT -6)   
Wow! My mom's level right now is 10 in her blood count. She also has stage 4 kidney disease. She's going back for a discussion with her doctor Friday to get checked again. The IV the doctor wants to do with her is a five days a month (4 hrs a day) sitting with the IV running. It says it's a type of chemo drug and will weaken her immune system and make her nauseous. It's expensive as all get out!
She rather go back to procrit shots.

Yes, I've been flaring for about a month. Hands and feet feel like they have been stomped on hard. Hair thinning, achy all over and fatigue terribly. Yesterday I developed mouth sores.
Joy

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 7/4/2012 10:43 PM (GMT -6)   
My insurance company just approved the use of Benlysta. I see the Rhematologist on Monday to find out when and how we start. I will definitely keep posting as I go through this journey. Hopefully, the information will help everyone, including you Barbara Lee. I have so many questions and concerns about this medication!!!

Laura

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/6/2012 11:22 AM (GMT -6)   
Hi Barbara -

Good to see you posting again, but sorry that the MTX seems to be failing you. We have a few members who have talked about starting the Benlysta, but I don't think we've had anyone report back after using it. Wouldn't it be great if it could help reverse some of these terrible symptoms you (and others) are experiencing?

I hope you are taking some dilaudid and are out of pain today.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/6/2012 5:34 PM (GMT 0)   
PS. I wouldn't try the gold injections -- unless they have changed a great deal since 1987 when that was the last step for my mother. Costs a lot and didn't seem to have any good effect at all.

The Benlysta sounds like a better bet -- but check all the side effects to see that they won't make any of your current issues worse. Such an awful predicament.

Hugs
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/7/2012 1:49 PM (GMT -6)   
Hi Joy,

Sorry I didn't respond earlier. I no longer use a CPAP machine, when I did my pressures where set at eight. However, now that they know I have both OSA and Central Sleep Apena I have to use a special machine called a VPAP. This machine is much bigger than the other one, it also has extra sensors, and mine cost $7,000.00 dollars. I am so thankful I have insurance.

I just had another sleep study and am waiting for the results so I don't know what my current pressures are. Hope you have a good weekend.

Take care,
Barbara

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/7/2012 1:59 PM (GMT -6)   
Hey Lynn,

Thanks for your input on the gold. I am not sure if the Benylsta will work for me or not. My Oncologist is worried about long term side effects. There isn't much data on it. Also, since the military command isn't willing to provide this medication we will have a huge co-pay, but hubby is willing to do what's needed for me.

My other concern is it has been noted that African Americans do not respond to it either. Since I am half black it makes me wonder, will I be sitting myself up for who knows what long term side effects, and have the medication not work for me.

If I do this the company does the first dose in their center, and then from there on, they give it to me at home. With all my issues I worry about not being in a medical center. I'm not sure what to do, but I can't stay at 25mg of pred forever. Hope you are doing well and hope to talk with you soon.

Love,
Barb

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/7/2012 7:31 PM (GMT -6)   
Barbara, techincally mine is a AVAP. I just call them all CPAP.

I hope your readings come back okay.

I hope the medicine works well for you.
Joy

CassandraLee
Veteran Member


Date Joined Feb 2003
Total Posts : 900
   Posted 7/8/2012 9:33 PM (GMT -6)   
Barbara:  hi.  I am so glad that you are posting again.  However, I'm sorry to hear of your continuing health struggles.  I have thought of you often and i will continue to keep you and your family in my prayers.
 
Cass

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/9/2012 11:57 AM (GMT -6)   
I went and read up more on Benylsta. Not only are the results somewhat inconclusive for African Americans, as Barbara said, but it just barely passed the review board. It seems most of the members didn't think much had been proven, ie that results were marginal, and that it may have passed more because nothing has been added to lupus treatment in years.

It's not something to try just because you haven't tried it yet. I would be very cautious, and in situations where multiple diseases are already at battle....well, in those situations it seems we know very little about how Benylsta works with other meds, let alone other diseases. I did find where it is NOT to be mixed with Cytoxan.

I wish we had more clear-cut answers...maybe since they've finally discovered how low your T-cells are they'll look into some of the meds used in the HIV/AIDS patients to keep away the opportunistic infections. You need those thumbs, darn it!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 7/13/2012 9:24 AM (GMT -6)   

Hi Barbara! I’m sorry I haven’t replied sooner.  I find lupus is such a battle. I almost died last year too. They called my BF twice and told him to rush to the hospital ‘cause I wasn’t going to make it thru the night, but I must say your issues are so much worse, yet you continue to pull thru. Your courage amazes me. You’re such a fighter!  

I’m right there with you concerning the meds. It gets way too old. I hope your Benlysta helps. I just started back on Cellcept. Regarding the multitude of blood units you’ve received and your concern of AIDS, every unit is tested for HIV, hepatitis A, B, C, cytomegalo virus and some other diseases. Do you remember that my BF works in HIV? He read your post and the first thing he said was, “I wonder what’s causing her T count to drop?”  I said every unit is tested for HIV. The HIV test is very sensitive and will pick up even trace HIV, but there is always the possibility of a mistake by the technologist on a unit of blood. Granted, the possibility of error is extremely low, but it’s possible. Since you’re getting blood so often, you may want to get tested for HIV annually just for reassurance.

I hope and pray that things get better for you Sweetie and I’m sending lots of hugs! Love ya, Donna


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/14/2012 12:04 AM (GMT -6)   
Hey Donna,

Thanks for replying, I know you've been through the ringer and have managed to get through it too. I admire your courage, you are a real fighter. I hope the Cellcept helps and you begin feeling better soon.

As for testing for HIV it's done every six months. I know that the chances are really slim, but they don't understand why my T cell count is only 5. My oncologist mention 2 weeks ago, when I had my port accessed for my heart cath and implanted cardiac heart monitor, that I have NO, B cells at all. Which means no immune system at all. They are not sure why, they have the Infectious Disease Doctors seeing me, they hope to get me in at NIH.

My hubby is confused and asked a valid question, if I have no immune system, why are they giving me immuno suppressant drugs. My oncologist even admits that to give me some of the meds used to treat lupus doesn't make sense. They focus on attacking the B cells, and I have none. I am so torn to as what to do. The Benylsta is a scary drug, and they have little information about long term affects. An allergic relation has the potential to cause death. The military hospital I go to, which is a teaching hospital with a medical school, has chosen not to offer this drug to lupus patients, makes me wonder why. I can't seem to get an answer. My Rhuemy is trying to get it for me away from the facility, but that being said, I'd have the infusion in my home. What happens if I have the infusion they leave and I have a bad reaction, my hubby could come home and find me dead.

So I don't know what to do I'm now up to 25mg of pred daily, my RA, Fibro, MDS (which now is a maligency), Pulmonary hypertension, gastorparsis, warts, and cataracts are all getting worse. Not to mention they don't know why I stop breathing and build up CO-2 in my blood stream. It terrifies my husband and child. I have the cardiac monitor that records always, they are trying to see if I have an arrhythmia. My QT interval is extended. They don't know if it's my heart, lungs, or brain that's not working right.

Sorry for the long post, I'm just sooooooo confused and really don't know what to do.

Hugs,
Barbara

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/14/2012 8:03 AM (GMT -6)   
Barbara Lee said...

My hubby is confused and asked a valid question, if I have no immune system, why are they giving me immuno suppressant drugs. My oncologist even admits that to give me some of the meds used to treat lupus doesn't make sense. They focus on attacking the B cells, and I have none.


Good grief. That does seem like a very very pertinent question. Could you slowly go off the immuno suppressants and see how your body responds? Dropping a little each week with weekly blood tests to see how T&B are doing might be a more cautious approach.

Otherwise, are they just thinking of adding Benlysta to your current meds without taking anything away? That seems a bit crazy, now that I think about it more.

I spotted a book at the library - "Your Medical Mind: How to decide what is right for you" - and thought of you in particular. I checked it out and will let you know if it really has good tips on decisions in these sorts of cases.

Hugs,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

pbjsammich
Regular Member


Date Joined Jun 2012
Total Posts : 66
   Posted 7/14/2012 12:12 PM (GMT -6)   
Hi I was reading your post and wow, the stuff you deal with. When I was first diagnosed with my RA and SLE, my rhuemy sat with me and went over ALL of the drugs and such that is used for my two diseases. THEN, he took a breath and said, ok, I went over all of that, here is what you can take and a few I think might help. My med list is very limited. out of noseyness? I asked about the gold and he told me no, no you aren't going to do that. It's too expensive and dangerous. Also the benlysta was in that no way category. He had told me it causes more damage than good. I've never looked it up online to see why, but my doc told me it does make certain symptoms worse and in his opinion really not worthwhile not unless you like being hospitalized. ok, good enough for me.lol
It does make me wonder why you are suppressants like you said if your count is low. Also, if you are thinking the MTX isn't working, chances are you may be right. Like Lynnwood stated slowly weaning some drugs out of you may be your best bet.
I was directed to go off my mtx then wait several weeks then started the plaquinel which I had a reaction to, so now i'm getting that out of my system. I kinda of miss the mtx in the way I could actually move around but not the low cell count issue and not eating. Kind of weird now that I think about it, I could move but had no energy to. hmm us lupus people are odd.lol anyway.
As for the mil hospital not using benylsta, well, it is a nasty drug, and there are issues of them issuing it without really understanding the effects. There are way too many symptoms lupus patients present that may be considered something else.
I really hope you find some relief good luck
pbjsammich :p
RA SLE
Acid Reflux/GERD

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/14/2012 6:01 PM (GMT -6)   
Hi Lynn and pbjsammich,

Thanks for your posts. Lynn, you are spot on with them being crazy. I will be interested in what you have to say about the book. The plan is to take me off the MTX once I start the Benlysta. Until that time tho they increased the MTX. I know it's because I am needing more and more pred. I've been on it for over 11 years now, as well as the Plauqnil.

I'm dealing with serious side effects from my pred, one of which they feel may be contributing to issues with my breathing. Of course my cataracts now are to the point I need surgery, I am gonna hold off as long as possible, I don't want them messing with my eyes. Of course they are worried about toxicity now with the plauqnil. Been on that drug over 11 years too. My osteoporosis is so bad, I have the bones of any 80 yr old.

I keep getting blood clots, and we are struggling keeping my Coumadin level correct. I am sick of taking 20 pills a day and that doesn't include stuff I take for pain. Found out yesterday my incision, where they put the internal cardiac monitor in is infected. They also found that my heart stopped beating for 25 seconds. They will see me again in two weeks and look at the incision and download the data.

Not sure how much longer I can hang on, most days I just want to sleep. I am getting up tho. My daughter told me the other day, "Mom you can only cheat death so many times". I know she's right, I missed her 8th grade graduation, and missed her high school graduation, she feels like I am going to miss her college one too. You know I spend to much time at the hospital when patient escorts, (people who push you in wheelchairs) know you by name.

Hope you all are having a good and pain free weekend. I off to my bed again. Thanks for being there.

Hugs,
Barbara

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 7/14/2012 10:24 PM (GMT -6)   
Oh, Barbara,

Of course the incision is infected! How could it not be with no T-cells. I can't believe those idiots can't see that. Also, please go in BEFORE 2 weeks if you think anything is the least bit funky.

Until your bloodwork improves, I wouldn't want anyone near my eyes either. Sometimes the devil we know is better than the devil we don't know.

Still in your corner sending you prayers, energy, and healing thoughts,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 7/15/2012 9:37 AM (GMT -6)   
Hey Barbara. I'm just trying to give you a little encouragement. You don't have lymphocytes (T & B cells) but you do have other white blood cells that fight some infections. Here is a link that explains leukocytes and what they do. If you want more info try Mosby's which is mentioned in the article, or ask me smilewinkgrin My BS is in medical technology (laboratory medicine). I know you're having a box load of blood being drawn. Coumadin itself requires blood draws. It's kinda nice to know a bit about that blood.  
 
 
 

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/15/2012 7:09 PM (GMT -6)   
Hey Lynn and Donna;

I can't express how much I appreciate you best wishes to me. I promise I will be seen sooner if I feel any worse. I am just so frustrated with the way my health is right now. Plus I am dealing with a lot of stress regarding my family.

Donna, they drew blood and told me that my WCB was 3.4, my MVC was really elevated. I forgot the number sorry, I do know that my ESR was 67 and my CRP is 2.3. So I have a bunch of inflammation going on in my body. I emailed my primary care Doc and she bumped me up to 30 mg of pred daily. I don't have an appt with my Rhuemy, but I will see him tomorrow, he is trying to figure out what's happening with my daughter. So I will mention how terrible I feel.

I also do my own blood checks for my Coumadin. They wanted to make it easy for me, (I only have to go 20 miles each way) but it can take up to 2 hrs to travel that far here. So I have a service with Alere Home Monitoring, it's like testing for a person blood sugars. I do the test and call in the results to Alere and then they either fax my results if I am in range or call my Dr if I am out of range. It really is a good way to deal with my INR levels.

If I get more results on labs I sure will ask you about them. I hope you and Lynn have had a good weekend. You both are in my prayers always.

Hugs,
Barb

kmqit
New Member


Date Joined Jul 2012
Total Posts : 8
   Posted 7/17/2012 5:42 PM (GMT -6)   
I was told by my former Rheum that I should try Benlysta. But after reading about it I wasn't comfortable taking it. To new, and so many unknowns. My new Rheum who I trust a lot, said that Benlysta is getting so much attention because it is the first approved drug in over 50 yrs. but all the excitment is for nothing. He doesn't think it is really that helpful.
I pick my battles, and Lupus I pick you! Yeah you should be scared!

Angeleyes13
Veteran Member


Date Joined May 2011
Total Posts : 636
   Posted 9/3/2012 12:26 AM (GMT -6)   
Barbara, it was nice to speak with you tonight. Feel free to email if you want to talk!

Hugs,
Shell
DX: CRPS, Fibro, CP, DDD, DJD, Syringomyelia, Arachnoiditis, failed fusion. Fusions C5-6, L5-S1, hardware removal and removal of scar tissue. Gastric Bypass 8/11, SCS implantation 7/12

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/3/2012 9:52 PM (GMT -6)   
Hi Shell:

It was nice to chat with you last night. I have to admit it's been a really long time since I visited the chat room. Thanks for your support and offer to talk at anytime.

Well for an update, I'm really struggling. I've had a pretty bad case of pericarditis and my steroids were bumped up to 35mg a day. They (Dr's) increased the amount of MTX I am taking in shot form. Which has now caused a huge side effect for me. My blood counts are dropping and I get a blood transfusion it pulls my counts up, then take my MTX and counts drop need blood again, I'm sure you see the problem.

I have basically been told they have no other options for me but to try the Benylsta. Of course my care is thru a Military teaching medical center. They are totally focused on the wounded soldiers, which they rightly should be, but it puts the rest of us on the back burner. Well my oncologist managed to get special permission to have the oncology nurses to be trained on how to do the infusions for me. So I am waiting for the company that makes the drug to train the nurses. Until then it's looking like I will be getting weekly blood transfusions.

I just am so wiped out it's unbelievable, yesterday hubby woke me up at 11:30 am and I laid down to take a nap and didn't get up until 7:45 pm last night. I feel like such a burden to him, we were supposed to be at his parents until the 9th of Sep. My Dr's said I'm to sick to go anywhere at this time. He refuses to leave me at home alone, our daughter has gone back to college. So he doesn't get a chance to see his parents, he's not seen them in over a year and they are getting older and have their own health issues. So YES I feel guilty.

Anyway that's the news here, I hurt like crazy and feel really sick. With all different illness I have sometime it's hard to determine what disease is acting up. Hope you all are doing better than me.

Hugs,
Barbara
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