[specialk16]

Hello All :hehe:

So my last 2 weeks of rituxan did not go well at all. I really didn't even get a "real" treatment this past Friday because I started having chest pains that lasted even after they discontinued the treatment. I ended up spending the evening in the hospital. My hematologist is hoping that my first 3 treatments will do the trick in boosting my blood platelets.

But my question is, would it be safe for me to be on low dosage of prednisone for the rest of my life? I am not sure how many more options I may have regarding my platelets. And prednisone has been the only medication thus far to control them. I was put on prednisone during my Rituxan treatments because I went through a flare right after my 2nd one. At that point my platelets jumped tremendously and have been up. But I just don't want to be on prednisone for the rest of my life..... any advice, has anyone else had similar problems. What are your doctors doing for you? What do I have to look forward to?

Thanks and much love!:blush:

 

[SarahP]

I am in the same boat

Hi Kasha

It has been awhile since I last posted. I had Rituxin in 2005 but then went on CellCept. I am still doing well on CellCept but am taking 5mg Prednisone along with 400mg Plaquenil plus other meds.

Rheum feels I should remain on 5mg prednisone indefinitely rather than risk a flare and needing to up the dose. I have been on some dose of prednisone for 4 years.

I would also like to know if others are getting completely off prednisone or taking a maintenance dose.

Sarah

 

[SoCalEric]

LONG before my lupus diagnosis, in fact it was the first thing that sent me to a Dr. in MANY years, I had a platelet problem. Started bruising for no real reason. Saw one Gp that didn't seem to think much of it, took blood, and I never heard from him again. My Dad sent me to his hemotologist who tested my blood (and looked at the results!) and realized my platelte count was VERY low. I was diagnosed with ITP. Had a bone marrow test done to make sure I was produceing platelets (I was) so it was assumed my spleen was filtering them out. I was put on 100mg of Pred., but they made a mistake filling the perscription and only gave me 10 mg pills...so I was taking WAY to little. Needless to say the 10mg didn't do nuthing and they were getting ready to remove the spleen when we discovered the mistake in Pred. dose. Once I was on 100mg things improved, didn't need surgery (still got my spleen!) and the ITP has never returned....but I went though plenty of other things over the next few years that eventually led to my diagnosis
Don't know much about your troubles. Has your marrow been checked to make sure your produceing platelets? What's your Pred. dose? Staying on pred. is never a great option, osteoperosis can result from too much time on the stuff.

Best Wishes,
Eric

 

[specialk16]

I am currently on 10 mgs. They talked a couple years ago about my spleen, but GP doc was all for it, but my rhuemy was against it. I have an appt. with my GP next week. and I have a new rheumy... so we shall see what happens :shrug:. I do have a hard time producing my own platelets. the whole spleen thing has me nervous because a lot of times they are removed and the problem isn't solved.

I guess I will just have to take it day by day... I am just interested in knowing what my next steps will be, or how my doctors plan on "fixing" the problem this time...

The world of Lupus can be so much fun.... :wink2:

Thanks for commenting I don't know much about cellcept.... I guess we shall see.

 

[pokey13]

Hi Kasha,

I hope your feeling better from your last Rituxan treatment. I have ITP also and have been treated with Rituxan. The Rituxan has helped with some of my Lupus symptoms. My Platelets do increase during treatment and for a while after, but in the end they drop off again. I have been on 10 mil of prednisone for 20 years now and it seems like no hope of getting off of it. well with some trys at reducing throughout the years,,and some times its been increased,, but for the most part its been 10 mil. I still have my spleen, my Hematologist is very conservative and dosn't want to take the risk of surgery.So thats as far as I have come.
Wishing you well
~Angela

 

[Sage Hen]

Hi,

I am much like Sarah P, in my treatment. I probably will, end up taking a low dose of Pred always.

Some days are still pretty rough even with the CellCept and Pred. I don't want to sound ungrateful, however, because...I had absolutely no quality of life before taking ALL my meds...but mostly the CellCept.

I feel it saved my life or at least is extending it.

I hope your feeling better now, Kasha.

For some, a low dose of Pred..is the way to go, and for other's not. Hopefully the feedback you give your drs. will help them, determine what is best for you...

Best Wishes,
Sandy

 

[Sage Hen]

I am sorry, I should have been addressing Special K. I have had terrible mental fog today..and am not able to focus very well.

Sorry again.

Love,
Sandy

 

[dudley]

Hi,

How low is your platlet count?

Elaine

 

[LolaLola]

I am having a job with Prednisolone. I just get sicker as I cut back further.
Anything from 7.5 mgms downwards is great to aim for but I am having trouble. They have just increased the methotrexate to try and help. It seems very unlikely I will ever get off pred.
Hope this helps.
To anyone on Pred. please remember your calcium supplements and bone density checks.
x Lola

 

[specialk16]

LOLOLOLOL.... Sandy..... Specialk and Kasha are one in the same.... ME! I am a Gemini... so I have been known to have multiple personalities... but we are one in the same.... so its not your foggy brain.

Well I went to see my hematologist today.... and her along with my cardiologist have determined that I may just be allergic to the rituxan, so I will most likely not go down that road again ( I wasn’t allergic to it back in 2005 but whatever).... as far as my spleen goes... she hasn't mentioned it. but, as I said before... my GP was the one that suggested it, and I won't see her until next week. I am very curious to see what she has to say about all of this. I haven’t seen my GP in a couple of years.

My hematologist did lower my pred to 7.5 because I am above 240 right now with my platelets… so all is well on that front for the time being….. the lowest my platelets have been is 5 or 6 but I usually hover between 12-50 (with no meds)….. so I am not critical all the time… just low. I am guessing that prednisone will probably be a part of my life…. But I know my hematologist doesn’t want that…. I am 32 years old and the though of me being on the drug for the next 40-50 years just doesn’t sit well with her….. she is pretty conservative like your doc Angela. As far as my lupus goes, I have been flaring A LOT this summer,,, which is very new to me…. but as my rheumy told me a couple of weeks ago, my lupus has progressed since 2004 (when I was originally tested) so it to be expected.

It is always so nice to be able to talk to you guys…. I feel bad because when I am feeling good I don’t come on here…. Not that I am trying to abandon, its just that I hate having lupus on my mind….. I had such a good 2 years… lost 46 lbs… been active in working out, having fun with my friends, been having fun with my son…. I felt normal for once in my life….. but here we go again… I do hope that the rituxan did the trick this time…. even if it is temporary….