[specialk16]

So I'm back.... Its been my 3rd bout with my platelets this year and I just don't know what to do... I've tried Rituxan twice, a round in 2005 and then another round this summer 2008 and my platelets still do not know how to act... Am I destined to be on prednisone for the rest of my life... very scary thought. anyone else having platelet problems that just won't go away. I am so frustrated at this point... if I could keep them above 100,000 I would be happy... Lupus Sucks!

 

[Maia]

Sorry to hear it didn't help this time around either. A study recently concluded it had that outcome for a sizeable percentage of people unfortunately. Have you tried other therapies for it besides Rituxan and prednisone? Not sure what else they would try, but seems like there should be some other possibilities.

I can't agree more with your last statement.

Best wishes and take care... (((hugs)))

 

[specialk16]

Honestly, my hematologist is at a loss. There was a new drug approved by the FDA to treat low platelets, but my she is a little leery about me doing it because of my age, she started me on low dosage prednisone again (10 mgs) and I am supposed to go back and see her in a week. So I was wondering if others have had this problem and what their docs have suggested...

Thanks for the love Maia... :blush:

 

[pokey13]

Hi Kasha,
Sorry your not getting better results from the rituxan. I have ITP also and haven't had any great results from the rituxan treatments ether for my low platelets. It has helped my Lupus symptoms, but I have not been able to get off prednisone ever. I think I will remain on 10 mil. forever. My Dr's have no other treatment for me, and I know how discouraging it is.
If you ever need to talk you can PM me anytime.
I hope you feel better soon
~Angela

 

[Joandublin]

Hi Kasha

Im so sorry the Rituxan didnt last. I hope someone else can come along with some ideas :sad: I hope also that the pred brings your platelet levels up to acceptable levels.

Like Maia says, what other therapies have they tried for your Lupus? If the Lupus is the key to your low platelets maybe you should be on immune suppressing medication to get that under control? I know how disappointed and fed up you must feel, especially after such a good period after the last bout of Rituxan and remaining off all meds :hugbetter:

I think the new drug must be Nplate (romiplostim) which was approved in August this year and I can see why your doc is leery. Its fairly serious guns.

http://www.fda.gov/bbs/topics/NEWS/2008/NEW01876.html

Have they ever discussed the possibility of a spleenectomy?

Sorry I couldnt be of any more help Kasha. I feel for you :sad:

Muce love
Joan:rose:

 

[Raglet]

I have had a similar experience with rituxan - it really only helped me cognitively (for which I am very grateful) but otherwise my cns disease is merrily eating away at me. Which has been really frustrating.

I have never got of prednisone and I don't really expect to ever get off it. It's just part of what I have to do, even with rituxan. If you need to stay on it long term like I have, just make sure you are on bone protection if you need to be on it long term.

cheers
Raglet

 

[specialk16]

Thank you all so much for your replies.... My heart goes out to you too Pokey,,, I never thought that I could be on prednisone for the rest of my life (maybe a little extreme, but you see where I'm coming from)

Joan Dublin, the spleenectomy was discussed a couple of years ago, but my rhuemy was VERY much against it saying that it may not be a good fix and that the low platelets could still occur. My hematologist hasn't suggested it yet though. Also, thanks for the info regarding the new treatment, I will need to read up on it.

And Thanks Raglet,,, I have to continue to take my calcium supplements... I am so worried about my bones. I had my first bone density scan over the summer and it came back okay.

You guys are the best. Its is nice to know that there are people that understand what you are going through...

God Bless

 

[KarolH]

Lupus does SUCK Special and I am sorry your having a tough go of it right now.

I hope they get you on medicine that works for you and not against you.

Keep your chin up and say Hello to South Florida for me.

My mom and sister are in West Palm Beach, just lovely there.

 

[Raglet]

honestly, this whole thing is so stupid. I am also not allowd to have my b cells tested to see how my rituxan treatment is going. I think the plan is to wait a year and then retest. This is totally barmy, and I totally trust that my rheumie will do what she can to get around this.

Fortunately she is great with email so I will just have to be treated via email i guess.

My gp is actually great with my lupus (he's had lots of practise with me :lol: ). There just aren't enough doctors, and too many patients so they are trying to limit the frequency of appointments.

thanks guys

raglet

 

[specialk16]

I really do wish I had a better Rheumy, I love my hematologist, but there is only so much that she knows regarding my lupus. She treats my blood disorder. I used to have a wonderful rhuemy, but she doesn't take my insurance any long. I was referred to a new guy, but he just isn't a personable as my old doc. Oh well. I guess I will just let the hematologist continue to treat me, even though it makes me very nervous.

 

[specialk16]

Oh yeah and Karol, I live very close to West Palm, actually in a little town about 20 minutes south called Deerfield Beach and I love it!

 

[helloos]

I was disappointed to hear that this isn't helping you. I hope that your doctor will be able to help you out more. It sounds very frustrating. I just wanted to let you know I will keep you in my prayers and hope that you start to feel better.

 

[IBDOROTHY]

ragelet,thanks for mentioning the congitive help you received with the ritux, i thought maybe it was only in my head. Ha! i had 2 treatments (may/june) but blood test(s) still show the b cell activity and ana count remains the same. however, in the last couple of weeks i have noticed a decline in
talking, thought process and an overall fuzziness and began questioning whether i should go through the whole infusion thing again. although i had other medical issues (mctd and lumbar disc degenerative pain) during the summer atleast the relating with others part of life seemed better. i wish now that i would have kept some type of daily, how i am feeling - symptom wise, journal and i wouldnt have so many questions about the degree of improvement i had with the treatment. anyway, i hope there are others that got some type of relief with the treatment. i return to the doctor on the 11th nov so i guess i will see what he thinks....