TOPIC:

I have been  on prednisone for the past 1 month - was at 60 mg for 10 days then dropped to 20 mg then 10 mg. I am planning to be on low dose steroid for some time- again my counts arent that great either they are at 30-35K on 5 mg .. I am hoping they will improve . Would like to ask as to how long you all have been on steroids like what was the longest period.. 

Years ago I was on it for 6 months but they don't recommend that now. They now say it should be only for a few weeks and to try something else if counts drop when it's stopped.

I've been on it for over 7 years. I managed to get off it completely a couple of years ago for 2 months before  my ITP relapsed alarmingly due to Clarithromycin. Last year I managed to get down to 2mg/day (I suffer dreadful withdrawal symptoms and have to taper very very gently) but back on 15mg/10mg alternate days due to another major relapse just before Christmas  as a result of  Romiplostim failure. 

Back when I was first diagnosed in 2004, I was on Prednisone for the first whole year.  Started out at 60mg's but couldn't handle that, so on one test day, I asked the nurse to ask the doctor if I could drop the dose.  He said I could go down to 30.

Thanks everyone ! My hematologist doesn't want me to be on prednisone for long. Every treatment option seems to have a lot of side effects as well. I am thinking may be staying on low dose steroids is ok for a while like maybe 6 months than going for IvIG ,Nplate or Rituximab . Rituximab seems very scary reading thru the side effects .Honestly all of them sound scary to me on top of the high cost and uncertainty that it may or may not work for me.

Unfortunately  it is not 100% certain a treatment will  work.
IVIg will only offer a temporary fix,  and is extremely expensive I believe. 
Rituximab is  too risky during a worldwide pandemic, in my opinion.
All treatments have long lists of side effects but no guarantee you will suffer from any of them
them. 

I took prednisone for at least 3 years at low to moderately low dosage.  It may have been longer than that, but my treatment log doesn't go back far enough to know for sure.  I did suffer a worsening of my osteopenia but no other obvious damage.  I was able to regain the lost bone mass by being very attentive to calcium/vit D/mag supplements after stopping the pred.

I agree with mrsb that Rituxan during a pandemic is a very bad idea.

I was on prednisone for almost 4 years - we were overseas and my hematologist in Hong Kong kept wanting my spleen & I wasn't going to let my count drop too low and need a splenectomy.   Even low doses of prednisone is not good for the body.   I have arthritis in hands/fingers, shoulders, had total replacement of both knees due to arthritis, have thin skin on arms and lower legs, osteoporosis [unfortunately calcium, D3 and magnesium did not help me like it did Janet] - due to prednisone?, maybe.  I also had cataract surgery last year - again, prednisone?    Maybe I shouldn't have been so hard-headed and stayed on it so long. 

Thanks all for your responses!!  Is 3 mg considered a decent low dosage to be on for 4-5 months or is it still high enough to cause issues long term?  I am on 5 mg right now .

Sometimes I think prednisone is like making a pact with the Devil. It works so well, but does so much damage.
My wife is the ITP patient, but I've been on prednisone -- mostly 15 mg per day -- for over a year for other autoimmune issues for which I haven't found effective treatments. I now have debilitating lower spine problems affecting my legs, which has been diagnosed as epidural lipomatosis (fat deposits inside the spinal canal pressing on the nerves), most likely caused by the prednisone. I will probably have to have spine surgery, wean off prednisone, and find a replacement medication that will put me at higher risk during a pandemic. Damned if you do, damned if you don't.
EDIT: Nope. Not caused by prednisone, in my case. I just got access to an old radiology report from over 2 years ago which showed that the lipomatosis was there long before I started taking prednisone. Nonetheless, steroid use is by far the greatest risk factor for this condition.
The ordering physician must have missed it in the report, or missed the report entirely. I should have had spine a long time ago!

My wife's ITP responds well to steroids, but she has learned she does just fine with low platelets, which hover in the high-20s to low-30s. If they drop below 20, she bruises easily, and starts monitoring her counts and watching for more serious symptoms, but the counts almost always recover on their own. Steroids are pretty much reserved for procedures when doctors require higher counts. Living with lower counts is often not nearly as bad as the risks and side effects of the various treatments.

I feel exactly the same way , living with lower counts and no symptoms is much more peaceful than going for all these treatments honestly.
Wondering If anyone got their Booster shot while on prednisone? 

Rob 16
It's been a long time since I last saw your name on  here. So sorry to hear about your problems. 

RR01
The physiological dose of Prednisolone is 7.5mg/day . Anything lower than that is not as destructive as higher doses. I was on 2mg/day for about 2 months and ready to taper down to 1mg prior to my latest platelet crash, which in answer to your question occurred  19 days after my booster. I've had 3 Pfizers and each one dropped my count which recovered spontaneously first time & necessitated me swapping from Eltrombopag to Romiplostim after 2nd dose.
After the booster with a count of 15 I gave up on Romiplostim again as side effects too much of a pain.  I've had really low counts since with  higher pred dose (starting at 20mg pred but now down to 10mg) and IVIg as symptomatic with a count of 6 which dropped to  4. 
It is now at 15 but I have absolutely no symptoms apart from bruises due to my normal clumsiness. 
Doctors seem to be obsessed with counts where as patients are more bothered about  medication side effects. It looks as if I have lost response to Prednisolone which as far as i am concerned is great news as it means I can taper and get off it again. 

Sorry to hear about epidural lipomatosis - I just googled it , I hope it is resolved and you find a  medication that works for you the best soon .. I am on the same boat as your wife- my count dropped to 15-20K and doctor put me on steroids - I dint have any symptoms at that time though. My doctor does have a doubt that the Covid vaccine might have caused a dip in my counts .Now I want to get my booster shot but donno if it will drop my counts further. 

mrsb04 I m sure your counts will go back up  its just that sometimes our body needs some time to gear back up. I went fr blood work casually , count was 15K and dint have any symptoms at all but then was put on 60 mg prednisone I am at a 5 mg now and really want to get off of this but not sure if counts will go to 10 or 15k .. Its just too much anxiety going for blood work every week too..

RR01, My wife, Ellen's hematologist eventually thanked us for teaching her not to panic in response to low (but not dangerously low) platelet counts. What wisdom we were able to pass on to her was wisdom we had gained here on this website. Her humility was a breath of fresh air! Eventually, ITP patients learn what counts they can live with, based on symptoms. It was a gradual process, which often meant asking for a repeat count in a couple of days before treating... lots of "watchful waiting". 

I have a theory, that part of the autoimmunity means that as your platelets drop, so do your antibody levels, which allows your platelets to recover. Similarly, when treating causes counts to rise, that causes antibodies to rise, creating a rebound response of platelets falling again. It's just a theory, but I have certainly seen where people who treat get into these crazy fluctuations; and I have seen where people who don't treat often stabilize at tolerable levels. The wild fluctuations end up being more scary than low counts that are predictably slow to change. I think that's what you meant when you talked about living with lower counts being "much more peaceful". 15k isn't so scary, if you're not afraid that the next morning it will be 5k or even lower. I even remember a man on here years ago who lived happily with counts steadily in the 4k-5k range. I don't recommend it for everyone, but it worked for him. He joked about how he missed juggling chainsaws, but otherwise he led a normal life.

The greatest lesson I learned from this website -- and I remember learning it first from Sandi -- is to calm down and don't overreact. Take it slow. Don't overtreat. Learn all you can, because the more you know the more you will realize this is not so scary, at least for the vast majority of people with ITP, with very few exceptions.

mrsb04, You must have missed my response to your comment in early November on the "Sandi" thread:
pdsa.org/discussion-group/10-social-chat/30380-sandi.html#71890
I am incredibly thankful that you and others have remained constant at this website, carrying on this important work.

I remember long ago discussing the possibility that you may never be able to fully wean off steroids, that it is possible to be on steroids so long that your adrenals (or part of your pituitary) permanently atrophies from longterm steroid use. I don't recall you ever saying if you had gotten your cortisol levels checked, or gotten an insulin tolerance test (the “gold standard” for assessing ACTH and cortisol reserve).

I can only give you my experience.  Rituxin scared me at first as there are some key things you need to check on before getting it. Basically it can reactivate certain diseases but if you don't have those and have never had serum sickness from an infusion it's not a bad option. I've had it three times.  First two time went with 1/2 dose. Gave me about 2 years remission each time. Next time did the full set and just now ending a 4.5 year remission.  Probably going to do it again as relative to vaccinations seems about perfect time to get it.  It does up your risk for infections but so does Prednisone.  One study says about a 1.72x multiplier for Covid complications but then they counted a lot of cancer patients in the mix so depends on where you land.  For me I'm in 50s, healthy otherwise so maybe it's a 1.4 mutliplier?  Depending on dosage Rituxin will stay in system around 6 months or so (can be longer) from what I've been able to gather. So, probably should be extra cautious during that time (especially for first few months and now while Covid still raging).  I will be working from home during that time but course not everyone can do that so... As for Rituxin, no side effects all the times I took it.  Was a smooth experience and works well for me but I've read only about 40% of people that get it have a durable remission from it.  Still, next option was spleen removal and still not keen on that one.

Hey, I've now been reading up on Rituxin and Covid.  I think I'm finally going to go the spleen route after reading up as it's got some serious concerns.  Look at this article:

COVID-19 in B Cell-Depleted Patients After Rituximab: A Diagnostic and Therapeutic Challenge (nih.gov)

Key takeways:
  Any amt of Rituxin will blow away your B-cells for 9 to 12 months from last dose
  B-cells are pretty important for getting over Covid and particularly for forming "memory" for antibody production in the future.
  Rituxin will make any vaccine you get shortly before or during it's effect period possible without effect.  Bit scary given we don't know what  future boosters  might become very important or when for Covid. Can also lengthen out your Covid sickness pretty significantly.

As said I had good results with Rituxin but given I seem to still be a decent candidate for spleenectomy it might be the overall safest route in our new Covid world.  Course that assumes it works but it often does and I've got at least a few indicators in my favor. Have a chance at lifelong remission with it while it's clear Rituxin is at least likely every few years for me as is.  Talking with hemo about it tomorrow.

Biggest issues with removing spleen besides risk of the operation itself (pretty low these days given laprascopy) would be you need to watch infections (particular bacterial) a little closer. Studies against Covid however don't seem to indicate any increased risk for getting it and only very slight increase in bad results for those without a spleen. Mainly just need to keep up on your pneumonia shots it seems.

There are other issues with removing the spleen. Look up 'monocytes after myocardial infarction', and also clotting events in the splenectomised. It's well known that portal vein thrombosis soon after splenectomy is quite common but the longer term risks are still being studied.

JJ
You beat me to it !! I'll add in the chances of  an accessory spleen, and the reticuloendothelial system taking over the platelet destruction. 

russp
 Is your ITP a platelet destruction or  platelet production problem or both? An Indium 111 scan would show if it is destruction. Even so there is absolutely no guarantee a splenectomy would work. 

I'd say both.  Rituxin sends me up to about 200 after treatment with slow decline over next few years after that. So destruction and production.   6 months ago tested in 90s, then 6 last week so...  I also had 6 vaccines last year so could be the cause of coming out of remission (3 for Covid, 2 for shingles, and 1 for flu).

Question is which has more risk? Rituxin every few years with 9-12 months of near or full b-cell depletion and associated infection risks or life without a spleen. Hard to fully say.  Either could at some point fail too so not clear on that front either.

Other options I've not looked at a lot. No to living on Prenisone. Too many adverse affects.  Is N-plate the injection one? If so, no to that for sure.  I dunno about the pill option or it's side effects. 

Previously was saying, yeah, do Rituxin again but reading that paper on length of it really hammering your immune system for so long is worrisome.

mrsb04 wrote:

JJ
russp
 Is your ITP a platelet destruction or  platelet production problem or both? An Indium 111 scan would show if it is destruction. Even so there is absolutely no guarantee a splenectomy would work. 

We used to have a group of ITPers where I live who got together every month or so - unfortunately that fell by the wayside.   Anyway there was a woman in the group who had a count of 5k or lower all the time - she went to London for the Indium scan & it showed her platelets were being destroyed in the spleen - she came back here and had her spleen removed - it wasn't long after that her count went back to 5k and never improved.  I'm with mrsb, no guarantee at all a splenectomy will work - there are other blood cleaning locations in the body that can/will detect the antibodies on the platelets and destroy them.  

I had been on prednisone for my ITP for nearly a year right after diagnosis. Can’t recall my highest dose now, maybe 60 mlg. Anyway it kept my platelets in the 150-200 range so it was wonderful for me. I already knew I handled Prednisone well because I had been on and off it for years for Ulcerative Colitis many years before. I had no side effects actually, very fortunate. Doc said I had to get off it, I was the one who practically begged him to leave me on it. Anyway, doc tried to wean me off it and right away my platelets started dropping. So then I had 6 Rituxsin infusions. They worked for about 5 months. I’ve had IVGG infusions but those are only temporary fixes. Am on Promacta now and my dose was just increased to 50 mg so we’ll see.

This is wonderful advice- thank you so much!

WeenM - when you were weaning off pred how did you do it?  Being on it as long as you were did you do it slowly?  What was you count when you started to wean off it.  Prednisone might do the trick but it is nasty. 

I had ivig done for 5 days - 20 ml/mg per day - saw an increase and then after a week it dropped down to the usual 25000 range . I am really tired of all these trial and error options , now my doctor wants me to try promacta . Has anyone been on promacta for years like how long do we need to take that - life long ? My insurance doesn't cover N Plate or Rituximab - I don't want to try either of them though .

RR01 - I can't recall if you have symptoms while in the 25k range.  

Years ago when my ITP came out of its "remission" (not normal counts) and hit the gutter my hematologist reached for her prescription pad and I told her point blank I would NOT take prednisone & look like the Pillsbury Dough Boy for our son's wedding, the dress I would wear would go nicely with the bruises.   She then had her office call to see if insurance would cover WinRho because there was no way I was taking prednisone - and thankfully it was covered, and thankfully she respected me enough to check (but she knew I was serious and would have a low count & bruises and not take pred).