New, Confused. . . and Trying to Weigh Options

Hello everyone:

I was diagnosed with CVID (which is to say that I have a lower level of IgG) in my body, so my immune system is a little weakend.

Anyway, I have a bone marrow biopsy and aspirate months ago because my platelet levels appeared to be dropping steadily after I had a major sickness which put me in the hospital and out of commission.

My lowest at that point was 12,000.

I took a tapered dose of Prednisone and things got back around the 40,000 - 60,000 range for awhile.

Recently, I dropped down to 2,000.

I'm a little confused and I don't know what to do at this point with my doctor. I certainly do not want a splenectomy (it really seems out of the question at this point). I also do not want to me on Prednisone LONG - TERM. I assume the side-effects of long term usage are not good for the body.

My doctor is okay with me not taking things if I'm naturally above 30,000 or so... but recently, the 2,000 mark was too low for his liking (and for mine). Though I really wasn't symptomatic (I had a blood blister type thing on my lip).

What have some of your experiences been with Taking Prednisone on low doses over a prolonged period of time. . . OR do many of you do a CYCLE of prednisone for a month or so and then not take the steriod for like another 6 - 9 months depending on your counts?

I'm curious to know what treatment options are working for people that are not too intrusive and physically taxing on the body.

Hello. I'm glad you found us. First of all, I'd say you have more options than the two you mentioned. I don't know if you've tried anything else.

What dose of Prednisone do you consider low? I've been on varying doses (5 to 30 mg's) for the past five years (not for ITP). I wouldn't really recommend it as a way to treat ITP if you are able to try other things. The long term side effects can be too harsh. We've had several people who have had hip replacements due to bone necrosis...not fun. Low doses don't do much for some people and since you didn't get a big rise from the doses you took, it leads me to believe that you're not a great responder.

Doing "cycles" of Prednisone for a month or so are not really protocol for ITP, although there are no rules set in stone. Ideally, it should be started at 40 or 60 mg's and that dose should be maintained until you hit normal, then it should be slowly tapered if you maintain the counts. It can work for some doing it other ways, but that usually gives the best chance of remission.

It's too soon to consider splenectomy, and having CVID, I'm not sure it would be beneficial for you. I'd research that if I were you.

I don't know if Rituxan is an option for you with CVID, but it might be worth asking your doctor about it. Either that or Decadron - another steroid.

It could be that once your body recovers from the illness you had, your platelets could rise on their own. It could take quite a while though.

Thank you for your response.

I actually was just hit with a 4 day burst of Decadron. . . but came back down to 12,000. I am about to begin taking Prednisone once again, starting at 50 mg per day.

I guess I'm just trying to find the treatment that least affects my quality of life in a negative way. I'm in my mid-twenties and although drugs like Rituxan may have positive affects, I'm worried about long term problems (yet alone the necessity of doing weekly infusions... which I don't really have time for).

The Original Prednisone dosage I got in March got me up, and lasted me until around now apparently, so I'm hoping that the same thing occurs? Or, I may have to just increase the frequency I get IVIG. (Since I have to get it anyway).

This is all just confusing and frustrating to deal with at such a young/transitioning time in life.

Since you're looking for the least invasive to your quality of life, I would encourage you to read up on homeopathy on this forum. There's lots of info and a good number of people who have used it successfully (including our son) and some that are still in their course of treatment. If you type in "homeopathy" in the search bar it will bring up the threads.

patti

I can't tell you that there is a treatment that will get counts up with no side effects. I didn't have time for the Rituxan infusions either, but after doing Prednisone countless times, I ended up realizing that if I just took the time off of work (four days for the month of infusions), I'd be a better employee and mother than I was on months of Prednisone. It ended up giving me a year of being treatment free. After that year, I tried it again and have been in remission for 6 1/2 years now.

If you're getting IVIG, you're already spending days tied to an infusion. Rituxan can actually use less time than IVIG in the long run. There have also been studies done that show that one or two infusions of Rituxan can be enough. You don't have to do all four.

At this point I've been getting IVIG infusions 1 time every 60 days. First, I think I would try to get them once every 30 days to see if this also assists my platelets. Then, perhaps I could do Sub-Q infusions (which is the same dosage as once a month) but you infuse them yourselves non-intravenously 1 time a week. Perhaps this will assist me in not having to take any other drugs besides IVIG.

At the moment I have been told to take 50 mg, 5 days and then reduce to by 10 mg every 5 days thereafter.

I am hesitant to start. I get a CBC on Monday... but I really don't want to start the Prednisone again. I know that it put me in "remission" for about 5 - 7 months, but right now I just am not having any visible symptoms at 12,000. (I did at less than 2,000... I got 1 blood blister on my lip but that was all).

I feel like just taking the Prednisone if I get another blood blister or any noticable skin marks, and then start taking it. Have others gone this route? (knowing your body and knowing the visible symptoms, and only taking the steriod dosage at that point)?

Watching and waiting is always a viable option, and is totally your decision. I don't know that many people who are so newly diagnosed would go that route though.

You lost me with the Sub-Q do-it-yourself IVIG infusions. Never heard of that.

Right now I'm trying to Convince my doc to wait for my CBC on Monday before I start taking Steriods.

It just makes me so angry because I FEEL FINE, and I have NO SYMPTOMS that are visible (Bruising, blood blisters, etc...) Why put a Toxin in my body when I am feeling just fine. Why "treat the number" all the time. Instead, if I see easy bruising, or blood blisters on the mouth, then I'll immediately take the Prednisone.

For those of you that do not know, there is ANOTHER route to getting IgG rather than always through the vein. This option is terrific if your ITP responds to IVIG. Because you can self-administer it from home, without getting a vein opened up. It's called Sub - Q IgG. The best known product I think is Vivaglobin or Hizentra or something like that.

You have to administer it I believe 1 time a week, maybe it takes 1.5 hours or so... but you can just do it while sitting at home watching tv.

SO... here's the update.

I go in for a CBC today and my platelets are at 1,000.

Terrific. This is just laughable. So I need to start on 60 mg of Prednisone ASAP, with a 10 mg taper every 5 days. Let the fun begin.