Benlysta

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.

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.

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.

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, 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.

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!

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

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

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,

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

Barbara, it was nice to speak with you tonight. Feel free to email if you want to talk!

Hugs,
Shell