Platelets dropping?

So I saw my Hemo today. I saw my rheumy last week. They both agree that the Rituximab is a good choice for me at this point. My platelets are dropping again for the third time in 7-8 months. They were at 275 4 weeks ago on a 15 mg taper. Then to 10 mg and they have dropped to 262 then 229, then 220 and today 167. I have my blood work done weekly. The 220 was Friday and the 167 was today at the clinic. I have don two prednisone blasts.
But there was allot of discussion about when to proceed. At 167 the platelets are great. But will they stay there? I am on 10mg of pred, maybe they will stableize?
I am so very tired. I would like a breather but the doctor was clearly frustrated at the discussion and kind of ended our appointment saying " you are not ready to make a decision", so go home and decide and then call me and I will get things rolling as far as the paperwork for the coverage. I kind of was taken back and felt bad as I had only been asking about the fact that we had not really given the 10mg much of a chance yet, and she had mentioned we could maybe even try 25mg....as I said I am very tired it has been very hard on me with all my oddities... and I just thought I could rest for a while as I am much better now that I am only on the 10mg...
was I wrong? at 167 and dropping fairly quickly should I go before I hit bottom again and have to start the pred all over again? You input so much appreciated, the fatigue is brutal. Sandy Too

One idea could be to schedule Rituxan for several weeks out but then to cancel the appointment if your count is above a certain threshold.
Erica

I agree. I wouldn't do it with counts of 167.

Personally I would keep tapering the steroids and see what happens. Over here in the UK it is protocol not to commence any treatment until count is below 30 unless patient is actively bleeding.

you guys are the best. I am afraid I am so tired I can't see the forest for the trees. I think I am still under that magic spell of prednisone brain. Of coarse this is what to do!
I will call back today and tell her to get things going anyway, as I am sure Rituximab is in my life now anyway from here on in off and on. To put if off a bit if things even out platelet wise can't be a bad thing. I sure would like to rest a bit. This would help me to do that.
Thanks so much. Sandy Too

Sandy - by the time I used Rituxan, my counts were under 10k. They stayed that way until my fourth infusion. I survived it. I'm not suggesting that you wait until you get that low, but this isn't like an airplane crash where chances of survival are slim.

I called and told them to set things up for November 14th or around. I figure that I get my blood work done again on Thursday which will give my Hemo time and I will know how far the platelets have fallen by Thursday night. I am still hoping they will stabilize.
I'm pretty sick though which I can't understand. it's been almost three weeks on 10 mg and still I am so ill I can't function?? Shoot, I take 7.5 mg regularly for the Addison's! Why so darn sick?
Everyone on the forum seems to do okay, they work and carry on, I work at home but you know I can't even do that!?
I am so nauseated, and the pain in my soft tissue is hideous. The bottoms of my feet are so bad it's hard to walk. I forced myself to take a long walk on the weekend and when I got half way I wondered how I was ever going to get back. Then there is this sinus drip, it never ends until I wake myself up gurgling. Miserable headache and eye pain so that I have a hard time to focus. There is dizziness that is quite bad, I keep bumping into things as I lose my balance. Yesterday I didn't quite make the door and hit the casing with my knee and I have a lovely bruise from that.
I am not a whinny person, I never thought it was such a good idea. More like "get up today as maybe tomorrow might be worse" kind of attitude has been my mantra. I am really sturggeling with being a sick person. That does not make me proud to say.
At the cancer clinic Monday I began to weep I was that tired and fed up, my sister hugged me and I told her I felt so guilty as there are so many who here who are so much worse off, and here I am fed-up? Not a stellar moment in my life.... and still today I am wondering just what I can do to help someone else or accomplish something and there is nothing.... I can't get up for more than an hour at a time. Is this normal? If so how long does this last?
thanks, Sandy Too

Sandy,

You have quite a list of unexplained symptoms! Many of them could be caused by a mineral imbalance, which could, for example, be an endocrine problem. If you have high blood pressure, abnormal levels of potassium, magnesium, etc., you might want to discuss it with your endocrinologist. These could cause headache and vision problems, muscle cramps, excessive sweating, and more.

I am not trying to diagnose, but I do think you need a good diagnostician to try to get to the bottom of your long list of symptoms. There are many kinds of (benign) adenomas which can have a wide variety of hormonal effects, and who knows what other systems your lupus might be wreaking havoc with?

Sandy - it sounds like typical Lupus symptoms. I get the same thing, soft tissue, bottoms of feet, fatigue, etc. When tapering off of Prednisone with Lupus, inflammation can come back full force for a while.

The bottom of the feet thing can be awful. It feels like you've been beaten by a baseball bat. I have that often.

Can relate to many of what you have written and sympathize. I wish we had an alternative to taking something that suppresses our immune system as it seems just to get one thing up we take everything else down.

Where are the soft tissue pains? What do they feel like? I'm curious because its a new feeling for me and wondering if you you could describe them.

well I had a rough yesterday morning and early afternoon....then early evening and evening I felt great! Like a million bucks...I was bragging even about the fact I could move and dance without too much pain. Thank God for small favors... this morning I am a mess again....sometimes I think that if I didn't have to go to bed I'd be allot better off. It's a crazy notion as sleep is when the body is supposed to heal it's self...not mine...I awake often through the night hurting....and in the morning it feels like the morning after the night before and I don't even drink! LOL!
Thanks Rob, I am on the list to see an endo...it takes a year or more to get into one here though so I won't hold my breath. I am also not convinced that there is more going on with me, but because of my multi auto-immune issues I find doctors often have blinders to it. I don't know how to be any more clear than I am, and often worry that they think I am just a hypochondriac or whiney.
As far a the soft tissue pain wquine, I call it that as with lupus, there are several levels of pain. One I call deep bone pain, that is usually in the joints, then there is deep muscle pain, here there is lots of heat and muscle pain like if you hurt yourself, finally the soft tissue pain is the tissue you can easily pinch between your fingers including skin and just below, this pain is my worst as it is wide spread and it burns and if you rub your finger lightly across your skin most anywhere it feels badly bruised and you can feel there are little lumps that are terribly sensitive to touch. When it's bothering me it even hurts my scalp which makes it almost impossible to lay down even on a soft pillow, and it's hot so I have to use cold pack sometimes. Nothing I know of takes it away but time or if I have to take a Lyrica. I don't like Lyrica it makes me daft. Lord know what it's doing to my brain, but what else am I to do.
Are these pain descriptions anything that you recognize Sandi? Your baseball bat description is one I have used several times about my feet. thanks Sandy Too

Sandi, hubby wants to know if the ruxitan infusions help with your lupus or did it just help with the platelets? thanks Sandy Too

I didn't have Lupus when I had Rituxan. Rituxan caused serum sickness which triggered Lupus.

Yes, I can relate to the pain descriptions. Sometimes someone will touch me and it hurts like I have a horrible bruise, but nothing is there. I also feel like my muscles are so stiff that they aren't getting any oxygen. Some days it's like being the Tin Man.