Shock has warn off (only took 6 months)!

Looking through the posts in the forum has helped so much as there is not a lot out there when you get blind sided with the ITP diagnosis. Never mind being able to do any research before the first treatment is started as don't have any information when you are sitting there in the hematologists office. Glad after all these months I get to at least read what has happened or is happening with others.

My story - I'm a 57 yr old female that up until May of 2012 felt I was in great health with only a minor digestive issue which was attributed to a gall stone (after ultra sound in April) and blood test showed a low B-12 level. Ultra sound moved the stone so was in pain for 2 months until surgery on May 14th. According to surgeon, textbook surgery except had to fix an umbillical hernia at same time (surprise). Stated couple weeks of minimal lifting and should be better than new.

Besides not being back on my feet in 2 weeks though I tried and they kept telling me 'give it time', it got to the point I couldn't even sit in my car for more than 20 minutes without doubling over in pain and/or fatigue. Good part, lost 25 pounds since beginning of the year...bad part took until end of June to get in for a primary care appointment. Which at least she started to schedule other appointments (CT scan, blood work) which of course took longer. Nothing in CT scan, no improvement but blood work showed low platelets. She didn't panic but scheduled another blood test prior to hematologist appointment which of course took until end of July to get and then was in shock mode of what the heck ITP was.

So I've been in this catch 22 of ITP and don't know what else since July. Hematologist states ITP has nothing to do with other pain issues 'but' put me on 70mgs of prednisone. HELLO! I must have the worse reaction to that drug because within a week there was no sleep, unable to focus, no appetite and now being told by other doctor that surgery healing will be slower now that on prednisone (so still in pain and won't do any more testing for that).

Hematologist was thrilled that my counts doubled and I had to insist to get off it...but as most know it is a ween down process and by the time I finally got off it in October, I was pretty much a basket case mentally (depressed, unable to focus (would lose track of what day it was, where I left a glass of water) & suicidal (to the point I won't even have pain meds in my home) and being an independent person and self-employed rarely would I even hear from anyone and in my state of mind, they really wouldn't have wanted to be anywhere near me.

Finally by October started to go to P/T to see if could resolve pain but wouldn't you know...counts dropped within 3 weeks off of prednisone. Since it worked last time, he put me on 40mgs to start...took no time at all to have same side effects and after getting down to 20mgs in December (wanted me on that until January), I had to go down to 10mgs on 12/23 to at least try and see if the side effects would subside over the holiday. Counts did go back up and were stable on 10mgs but that surprised hematologist as he was rather irritated I went down to 10mg's even though that was what he was going to do if my counts went up.

Only other change this time from last was along with my now monthly visit for count checks was a monthly B-12 shot. Whatever works!

Glad for this forum as I haven't come across many people in my area that even heard of ITP and most people don't get it. When I had enough strength to get out there, the only comments were you look so good now since I lost weight. I stayed away from lots of folks while on prednisone because it would have been no problem to come right back and say "I feel like crap, get no sleep, don't feel like eating, get stuck by needles 4-5x's a month and just get out of my face."

Sorry for the long post but it's been 6 months of holding all this in and accepting that I need to take more control over my treatments. Of course, now I have a cold so I'm sure the counts will go down before my next count check next week but I can tell you, no way am I taking more than 10mgs of prednisone!

Good wishes to all living with ITP in which the treatments seem way worse than a low count.

Hi Lori. I'm glad you joined the group.

Prednisone is nasty. Your side effects sound pretty typical to me. I also had depression during the taper, along with all of the other things you listed. Sometimes, a low dose will do the trick and I was able to hold counts steady for a while many times by doing it that way. My hemo was pretty agreeable to whatever I wanted to do, as long as counts were in a safe range (over 15k for me).

ITP doesn't cause pain, so I hope you did find another cause for that. Sometimes, surgeries or medications can trigger ITP in predisposed individuals. Any shock or trauma to the body can cause the immune system to go haywire. Nothing you could have, or should have done to prevent that.

Yes, taking control of treatments and making suggestions does help. What have your counts been like?

It was dropping so quickly from 75, to 57, to 26 by time I got into hematologist so caught it in time before put me in panic mode. He did state that trauma to body from the only surgery I ever had and/or maybe just the drug combo that put me to sleep could have triggered it. Probably always had it and have accepted that at this point in time.

No the other pain is now being attributed to being costochronditis (sp?) another chrnonic rib cartilage condition with no cure and no way to test and no know reason (other than trauma to area)...makes me wonder how textbook that surgery was Personally don't quite believe that either as not at rib anymore so I'm opting that it is abdominal adhesions...but again nothing that can be done with that either. At least I can function now.

Last count at beginning of January was way up to 142, so I'm sticking with the 10mgs and making sure to get pumped with B-12 each appointment. Counts much better with the B-12...don't know why but I'll take them if it keeps me at the lower prednisone dose.

Hi Lori!

ITP is a strange thing! I, like you, struggle with the prednisone. I have just been diagnosed with ITP that was discovered in late October. My platelets were at 40k and falling. I am now stable but only at 40k. I doubt if they ever figure out what caused my ITP. I am very active and enjoy anything outdoors. I will to modify some things but I will continue as before.

You hang in there and keep going and doing what you enjoy! Smile all you can! I guarantee you will fell better!

Jeffrey71

Lori - has your doctor tested you for Pernicious Anemia? There are two blood tests that can diagnose it - homocysteine and methylmalonic acid (MMA). Once you start treating B-12 with shots though, you can't test because those two levels go back to normal. I have also had low B-12 in the past. Ideally, the level should be above 400 (even though the reference range might say 200). I have read studies about a link between ITP and Pernicious Anemia, some people have reported a rise in platelets once the B-12 levels went up. It's rare, but it happens.

I'd doubt that you've always had ITP. I'm sure they did a CBC before your surgery and if your counts were down, they would not have gone through with it. You probably have always had the propensity to acquiring it.

Who puts you in panic mode, you or the hemo? No reason to panic. Low counts do not = death. You are monitoring and respond to treatments, you'll be fine.

When you feel like hell and go through so many tests for so many things, the blood test results and referral were passed on to the hema with the indication that may be leukemia and that I may need bone marrow biopsy. So I was in panic mode before even finding out about ITP. Hematologist was not very clear on what ITP was to begin with and he was the one that mentioned the low B-12 again.

In December 2011 at the first blood test (hadn't been to doctor in 10 yrs before that), no insurance, it was at 119 so guess that was why primary mentioned taking B-12 tablets.

Because I was taking B-12 tablets from January through March, in April platelets at 140. Stopped taking tablets as so much pain and couldn't eat cause of gall bladder, so pre-op platelets were at 128 and per surgical notations there was nothing about any excessive bleeding.

Now looking at the paperwork - so many CBC's hard to remember what numbers were when (post surgery May 14) counts: June 18 / 68, July 12 / 28, then day of first hema appt July 27 / 26. Then on prednisone and went back up to 75 and up from there until October when came off and dropped back down to 75, then down to 37..then back on prednisone only this time with the B-12 shots and counts really bounced up.

Now I know low counts are not a big deal...even hema is starting to state that my normal if I get and stay above 75 would be fine as only real symptom from the ITP I had was bruising that would not go away on the top of my legs (and I didn't bump into anything). That was why the discussions are so good to read as I've never been below 26 which is a lot of peoples high numbers I see.

It was all in the catch 22 thing with other issues and everyone telling me, give it time, give it time...which I think we know our own bodies and I had to even force someone to deal with me back in June and then hearing that they were not going to address other surgical issues as low platelet was way more critial. You hear 'critical' from enough people and you start to believe it, especially when drugged up on prednisone.

From December 2011 and as far as I know my whole 56 years prior to that, I never had any questions or concerns regarding platelets. I'm sure if I had low platelets before this, someone would have at least mentioned it to me, especially after having two children years ago

PS: And as far as getting this doctor to move toward something else, I really doubt it unless I can fire back at him with something, so I will do some research. Not that I don't get care but this is a VA medical center, so the government has their checklist of acceptable tests and treatments.

Thanks for your notation on the pernicious anemia and I'll post when/if I get some kind of response from doctor after next weeks appointment.

Lori

Yay, even with a cold for the last 10 days and only on the 10mgs of prednisone per day, count solid at 141 (was 142 on January 3rd). Will start taper down of 10mgs every other day starting on Feb 12th (would start tomorrow but out of town until 12th).

Another B-12 shot has provided much needed energy, even though will crash and need a day of sleep by Sunday - strange how you get to know yourself after going through so many tests and medications. Hema did state that B-12 doesn't affect the platelet count itself but does help with other things in 'the DNA' that may assist with keeping counts stabilized as they don't get used for whatever the B-12 is helping with.

Does not believe pernicious anemia as had CBC's from before all this and other counts that should have been off the chart were fine but I'm still keeping that one in the back of my mind for future reference (thanks Sandi).

Hope all have a great day and can't wait to be in some warmth come Monday - even if it is only for a week. Take care, Lori

Just an update from the 2/27/2013 count check...ween down from prednisone since 2/12 on 10mg every other day and monthly B-12 shot. Count actually improved to 156, so will be on 10mg EOD through March 16th, then off, then retest on the 22nd.

I asked again on the B-12 helping with this and about pernicious anemia. Hema now decided that for me the B-12 was definitely a booster (but still won't acknowledge anything about pernicious anemia). At this point, I'm just thrilled with the counts stabilized even with less prednisone.

Think hema is a little more optomistic about this working this time as did state that if after a month of being off prednisone and counts stable, then will visit on every 2 months for testing and then only twice a year. Fingers crossed!

Good luck! You're doing great!

I'm new to the site, but I'm curious what the B-12 shots have to do with platelet count? I haven't seen this discussed as a conventional or alternative treatment. Have I missed something??!

There really isn't any connection between B-12 and platelet counts. Years ago, I once saw a blurb about low B-12 being a factor for low platelet counts. It was one small study and I have never seen anything else to substantiate it.

My thought is that taking B-12 won't hurt, especially if the level is below 600. Daily high dose sublingual is just as good as the injections. If it does help the platelet count while your raising your B-12 level, you killed two birds with one stone.

The B-12 given was not being provided to raise my platelet counts. It was only given as I was B-12 deficient and not for anything to do with the ITP. After first go round with prednisone and no additional B-12, the increased platelet count dropped very quickly.

So with the expectation that prednisone was going to help the platelets this second time around, the doctor agreed to provided my monthly B-12 injection during monthly platelet count checks.

Only thing noted this time was that even though dosage of prednisone was being lowered, the count increased...not that the B-12 increased it but he felt that whatever else the B-12 was helping with (even if it was just my mental state), it was lowering the number of platelets being destroyed.

Just a quick update...tapered off the prednisone on March 16th. Count check today was a stable 153 so will stay off for a month and get recheck on April 19th.

Yes, B-12 shot was also provided and if ever comes a time I don't have to go for monthly rechecks, I will go back on the B-12 tablets as I'm not about to stick myself. If anything the B-12 gives me some much needed energy...could be just an emotional boost but I'll take it

Hoping all get and keep stable counts for a while as it actually feels good for once.

Well, I was happy with my counts today but hematologist wasn't thrilled as since off prednisone was at 153 on 3/22 and today down to 129...not that it isn't a good count but recheck on 4/19 as feels it will be like last time which went from 107 down to 53 in just a couple weeks. Poop!

Anyway, he agrees to leave me off prednisone until the 19th and if still dropping will 'discuss' other options as since twice on this drug is just keeping the counts up when I'm on it. Getting the feeling he doesn't think a real remission is going to set in.

So I have a little more time of feeling 'normal' and I'll take whatever I can get at this point as been really since May of last year between low counts and then prednisone.

Will see what April 19th brings for updated counts and 'my options' at that point.

Well, at least you will have a little more time to be off pred and feel normal.......I usually feel with ITP it has to be one day at a time.

Appointment 4/19 was promising as counts still at 128 after being off prednisone for a month.

Got B-12 shot to pump me up. He decided that shot was better than daily pills since wouldn't know how much B-12 my body was absorbing versus knowing that they overload me with the shot.

I really think I'm a test subject with this B-12 to see if it will help hold my counts or that it helps with something else that was using up my platelets.

Anyway, safe for another month!

Sad about the Boston Marathon but not going to keep us New Englanders down. Love and support to all those families out there with loved ones and friends affected by the tragedy.

Slow taper seemed to work and count still at 128.

Doc decided that was a fine level and probably my normal. So I won't have to go back for another check until August unless I start seeing any symptoms. He also decided that I can now take B-12 pills daily versus having the injection monthly.

Prednisone has done a number on my vitamin D levels as they were just fine before. Last check was that I was really low so get to take that daily also.

All I know is I feel so much better now that the heat in the house is off and I get to be outside in decent temperatures.

Wow, been a while since checked into the site.

Counts have been checked 4 times in the past year with 'stable' results anywhere from 111 to 122, so hematologist just released me back to primary care at my last visit. Since he is not treating for anything at this point feels primary care doctor can monitor it from this point on.

I've only really used the hematologist visits to ask questions about other medications that were being prescribed for other health issues. Come to find out, primary care went to put me on flexeril and hematologist stated not to take that as may impact platelets...so on zanaflex for muscle relaxer. Strange how some doctors understand low platelets and others just follow protocols on health treatments even though diagnosed with ITP.

So the prednisone (after two attempts at high dosages and then tapering) did enough so that hematologist feels that if stay over 100 than no reason for me to revisit him.

Just wanted to update the conversation as can't believe how having this site to go to and read updates helped get me through the initial diagnosis and treatment. Looking at it now, can feel very lucky that first option of prednisone did the job (even though had to run through the treatment twice).

Crossing my fingers for a long run of stable platelets and wishing the same for others with ITP!

Your counts are great! Not many are able to sustain a count like that after one round of Prednisone. I hope it keeps up!

I've taken Flexeril for many years and have never had a problem with platelets. All drugs have the potential to cause a platelet problem, so it's always a 50/50 toss of the coin. Any drug can cause one person's counts to go up and another's counts to go down. You never know.

I'm glad that you checked in...love to hear good stories!

Ended up with two rounds of prednisone (Aug 2012-October 2012; started at 70mg) but dropped right away so hematologist felt tapered too quickly...then (November 2012 - March 2013 started at 40mg) and the longer tapering seemed to do the trick this time.

Know what you mean about the 50/50 toss of the coin on other drugs that are prescribed. Have no clue why hematologist stated no to the flexeril but okay for the zanaflex, think more of it is his personal feeling versus anything documented. Get side effects of some sort (not platelet wise) with anything so he seems to be on cautious side of what drugs/dosages.

I wanted to post the success on just the prednisone in case others get the 'try again' recommendation after the first time around. I wasn't hopeful during the second try but with the slower taper it has seemed to stabilize at a much higher count than he or I expected.

And yes, I hope it stays up also after I go in for a right SI joint injection as goodness knows what the pain clinic will be pumping into my backside

Take care!

Other Adverse Events Observed During the Evaluation of Tizanidine:

Hemic and Lymphatic System: Infrequent: ecchymosis, hypercholesteremia, anemia, hyperlipemia, leukopenia, leukocytosis, sepsis; Rare: petechia, purpura, thrombocythemia, thrombocytopenia.

dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=20674#i4i_warnings_id_ce55f908-4e79-47fa-b62b-6e877d504696

It's listed, but hopefully you won't have a problem. Antibiotics seem to cause platelet drops the most.

After I was first diagnosed, I did a second Prednisone round within the first year and had three years treatment-free after that. It can work, but oh the price you pay!

I researched it also and called the hematologist about it but because with back spasms now for over 2 years they can't leave me hanging with nothing.

He stated to start it (that was a month ago) and I was going to blow off my hematologist appointment last week but he insisted I get counts done (so he knew it). I think it did drop the counts a little bit from 122 to 111 but since not drastic, he is letting it go as I can at least walk around now.

Oh yes, that first year was 'hell' on the prednisone that was why I didn't think the second longer treatment period was even going to work. Plus not sure if it hadn't what hematologist was going to do as every time I went in for a check I told him would never take that again.

My mind was messed up to the point I had to have sticky notes to remind me where the heck I left a glass of water, never mind having driven into the back of a stopped car in a parking lot, having my washing machine stop working and leaking all over the floor and not enough energy or caring to even clean it up for 2 days...yep, not looking to take that again...ever

I was the same way. Couldn't make a coherent sentence to save my life. My co-worker used to hold up signs when I was on the phone because I couldn't talk. I also backed into a car, and flew through a puddle in a parking lot and splashed a family without realizing it until I heard them yell. I have many stories which I laugh about now.

I swore never again too, but I've been on it for the last 9 years for Lupus and will never get off. I am not on a high dose though and only do that when I have bronchitis for a short period. I actually love the drug now - can't move without it.

Do you have spinal disk problems? That can cause back spasms. Been there too.

I think if have to go on prednisone again, it will have to be on a much lower dose than even the 40mg. Yes, can laugh about it now but back not so much.

No real diagnosis yet on the back/rib/hip...they had me on tramadol for over 6 months. When I was on that nothing hurt but also nothing was being checked either, so whatever it is now is probably permanent.

Pain management has: lumbago, chronic low back pain, right sacro iliac joint dysfunction, thoracic back pain, costochondritis - tietze's syndrome, right greater trochanter bursitis and myofascial pain.

Attempted gabapentin for 3 months (made me suicidal). Been to 2 months of PT/OT..PT made it worse, OT worked while I was having treatments (Bowen Technique) and doing acupunture, TENS machine, hydrocortisone cream for ribs. As soon as didn't have OT treatment weekly, right side of back would just start to tighten until couldn't sleep or sit or drive.

Won't do MRI as not 'specific' enough and feel any issue with lower disks are just 'normal' aging..all I know is never had back/hip/rib pain before having the 'textbook' gall bladder removal in May of 2012 and since the ITP was more of a concern, just left the rest of this pain stuff blowing in the breeze. Sad now as both PT and OT stated that could be permanent due to length of time not having a diagnosis.

So could be a disk problem but don't think will ever get a real answer for another couple years

I went through the same thing for years with my neck. Went through everything you are going through. I had degenerative disk disease and herniated disks. The only thing that helped a bit were steroid injections in my upper back, about 10 of them every six weeks. I did that for years at Pain Management, then developed electrical shocks down my arm. At that point, I knew it was stenosis and got an MRI. I ended up having surgery to remove and replace the disk two years ago. It was half-way into my spinal cord.

It makes me crazy when they treat and don't even know for sure what it is. I knew I had DDD and herniated disks, but didn't know it was stenosis until it got really bad and I ended up with permanent muscle damage.

I tried all of those drugs too and yes, Lyrica was the absolute worst. I wrote a whole thread about the experience.

It has taken me 2 years to finally get approved to go to pain management as primary care tried to get MRI but radiologist stated no unless pain management wanted one, pain management stated no appointment until I went through another course of PT/OT. So finished OT in June, took until August to get the pain management appointment. He just looked at hip x-ray and rib x-ray that was done and is working from those. I had lower spine x-ray in August of 2013 which noted moderate intervertebral loss at L5-S1, which is why PC tried for MRI to begin with...but radiologist just stated probably just age related so canned the MRI.

I can only hope that during steroid injection for SI joint that may use x-ray to check out lower back but doubt it (even though stated lumbar spine and right hip joint may be contributing to the pain). His plan: Right SI joint injection for diagnostic purposes, then will consider Bursa injection under fluoroscopy, then costochondral joint injections on right two lower ribs, then consider ultrasound guided trigger point injections into lumbar musculature. Amazing that no where in there is an MRI. After all this my muscles should be like sponge

Where it takes 2 months to a treatment than a month later is a follow-up to see if continuing, I ought to be well into 2015. All I know is that the zanaflex has allowed me to sleep but have really start feeling the muscle weakness. Funny how hematologist states that pain clinic should get a platelet count prior to procedures but that doesn't seem to be in their plan.

Changed primary care doctors after the gabapentin/neurontin nightmare as was a wreck at a follow-up appointment stating it was not helping the back and I was sick of being in pain. Her response was to go up on the dosage. After a week, I realized I was a mess because of the drug! Told them and got no response, so slowly weened myself off of it. Then saw in my records the flippin' doctor put in at that visit (reactional depression) as a diagnosis. OMG, if don't have enough to discuss with specialists, now I have history of depression in my file because she didn't even recognize it was a side effect of the drug. Got to love that mandatory health care coverage

Oh well, another day in paradise!

Lori:

I have tried many, many things for pain over the past 15 years. I am currently on Norco, Flexeril, Prednisone and Naproxen for pain management. I tried so many others too...Cymbalta, Lyrica, Savella and others that didn't do squat. I also tried alternatives to meds such as massages, chiropractor, PT, TENS, home cervical neck traction, ice, heat....you name it. I also had the spinal injection (forget the name of it, was done at the hospital) but it didn't do a thing. They usually do a series of three, but don't bother with the last two if the first one didn't work. In addition to the cervical disk problems, I have myalgia due to Lupus.

The one thing that has consistently worked the best is an acupuncture mat that I bought through Amazon. It has a lot of plastic spikes coming out of it and nothing, nothing has helped my muscles relax like that has. It was about $25.00. I lay on it with bare skin and fall asleep that way. I wake up with it literally stuck to my back but I don't care. It seems to break the pain cycle and relax the muscles. It is a medication alternative and does more than any medication I've ever tried. Ha, my puppy recently ate it and I immediately ordered another one.

Of course the relief is temporary, but with frequent use, it's the best thing ever. You should try it; it really does help with spasms if you can stand the pain of the spikes. I don't feel it much through my clothes. My husband thinks it's wicked, but I think it feels great!

Another really odd trick that I picked up is drinking coconut water. It also causes muscles to relax some.