Questions for Those Experienced with ITP

7/21/2015:

Good morning everyone.

I just wanted to say Hi. I haven't thought much about ITP, which has been a nice little break. I plan to get my CBC done probably next Tuesday, just to see where I'm at.

Also, one thing that interests me is the following:

On my last CBC of 98,000 one of the reports stated (still) that I have abnormally large platelets. As we know, the body can produce these larger platelets to compensate for a reduction in platelets circulating in the body.

My question is this:

At 98,000 does my body still think this is 'too low' and is still currently producing large plateles?

OR

Are the large platelets just still roaming around my blood from weeks ago?

Curious to know if anyone has thoughts/experience on this.

Life expectancy of a platelet is about 10 days

Deln:

New platelets (reticulated) just released from the bone marrow are large. They shrink as they age. People with ITP tend to have more larger ones because the destruction process gets to the aging platelets before they have the chance to get older and smaller.

So, I am having pain in joint, hip area.

I was informed this should be looked at because of potential a vascular necrosis.

Could be. Steroids can cause it. Or it could be a symptom of steroid withdrawal. It can take a long time for that to go away.

Hi Sandi,

I am confused. How can it be steroid withdrawal? I have not taken steroids now in over 45 + days.

Also, how could steroid withdrawal even manifest itself in the joint area like hip/ upper leg?

Joint pain is a very common symptom of withdrawal. Withdrawal symptoms occur when the body gets used to a drug but doesn't get it when it is expected. I've never taken Decadron, but have had a lot of experience with Prednisone. It's amazing what that drug (or lack thereof) can do. People have experienced withdrawal weeks or months after the drug was stopped.

Steroids can also cause arthritis. But yes, get checked out because avascular necrosis can be serious.

7/23/2015

Getting MRI today. Will have better guidance on this. Hopefully it's a groin pull or maybe some response / bounce back from the steroid use rather than AVN.

No AVN, good sign.

I was thinking I'd be surprised if steroids did that quickly, I mean, some use steroids for years.

Glad to hear it is not AVN. I have some pain in my hips as well and assume it is a prednisone withdrawal symptom. I have been using my foam roller twice a day and that seems to help alot. Glad to hear you are otherwise doing so well.

I didn't think it was AVN either, but glad you confirmed it! Probably steroids, the gift that keeps on giving. Good news!

7/30/2015

Good morning everyone, I hope you are well.

I decided to get my platelets checked today and my number is 112,000. It appears that after these past 4 months, I have finally stabilized and returned back to 'normal'.

Just in time now because I'm about to get Nasal surgery on August 12. It's funny how non hematologist doctors are when you talk about platelet counts. They freak out if you have 50,000 or even are on the low end at 90,000 or so. So now I need to get medical clearance from the Hematologist to state that low 100,000 count is acceptable for surgery.

This has been such s struggling journey. I do think, that I underestimated the steroid effects on me mentally. Now, being off steroids I can see how they made me more depressed, sad, out of control of my own mental state at times.

This is tough, and I do not look forward to going through this again the next time one of these episodes hit me.

It also makes me weary to get sick again, or I'm feeling more hesitant or cautious to do things that will expose me to a viral illness that prompts this antibody response.

That's great! An unusual story, but seems to have worked out.

Yes, a lot of doctors do not like counts that are below normal. ER docs can be the worst.

I used to feel the same way about getting sick and completely over-reacted when I was exposed to germs. I also avoided OTC's like the plague. I found out in time though that counts can drop for no apparent reason. Sometimes I would get sick and counts would be fine, or I'd take an Advil and have no problems. I started to relax after that. You can't control everything.

Deln,

I'm glad that the pulses worked for you. Try not to worry too much now. The constant stress does where our bodies down. I've made it through the 5 years a surgery last year. And, I feel it is amazing.

Take care and wishing you good luck on your surgery.

8/5/2015

Good afternoon all. I hope you are all doing well. I'm getting ready for my surgery next week (8/12). Of course, in the interim, I've now gotten a head cold (sinus, congestion). Because of the trauma that has happened over the last 4 months, I'm not concerned and seem to work myself into a frenzy.

1. I'm thinking that now that I am 'sick' again, now this is going to stimulate another ITP episode.

2. Also, now I'm wondering if I am able to get that nasal surgery next week, given that I am sick. (Though, if people can do surgeries under much more bodily stress, sickness, I'm guessing this isn't that big of a deal).

Deln:

The thing you have to learn is to not worry until or unless you have to. Your counts just might make it through this. If not, you will deal with it and you will be okay. Worrying is a waste of time and energy, especially if nothing bad happens. Don't expect the worst. Sometimes counts actually go up when one is sick.

By next week, your head cold could be better and you might be well enough to go through with the surgery. If not, the worst thing that can happen is that it will be postponed. I know that's not ideal, but it is what it is.

My mind wanders now, I never used to be like this until all these medical issues hit. Now, I get anxious about ITP, (viral infections that might lead to ITP), surgery.

I guess I'm so anxious because I know what I just went through for 4 months, and I dread being there again.

As far as surgeries are concerned, I think a cold won't postpone it. But an infection would.

Also, what were the only "ITP Friendly" pain meds one can take. Tylonol? Is that it, or was there one other one? Motrin?

Tylenol is the one that is supposedly okay, but even that is on the no-no list. Once you've been at this for a while, you tend to break the rules of following that list.

I would think that a cold could delay a surgery on sinuses. You'd have to ask the doctor.

I understand that anxiety of what it takes to get to a good point and not wanting anything to corrupt that. Let me tell you a story. Years ago, I had just finished four Rituxan infusions. My counts were good after years of ups and downs and steroids. About two weeks later, I started having strange side-effects. I was walking into walls, irritable and my skin was crawling all the time. I just wanted to climb out of it. I couldn't figure out what was going on. One night, I went to take my daily Celexa and noticed that it was a slightly different color than it used to be. I wasn't too alarmed because I know that they switch manufacturer's all the time. For the heck of it, I looked up the pill on the internet. It wasn't Celexa, it was Lipitor. I was furious. I had gone through two weeks of withdrawal from Celexa, but I was also worried that it might end up compromising my counts. The pharmacist is a friend of mine and she made a mistake. I was terrified that my counts would drop and worried for weeks. I was SO upset because of all I'd been through to get counts up. Nothing happened. Counts were fine.

Other times: I followed all the rules. Didn't take any OTC's. Tried not to get sick. Counts dropped anyway.

You can't control it. There isn't anything that you can do or not do to keep counts up or stop them from dropping. Use common sense, but try not to take it to the extreme. The things that you think might drop counts most of the time, do not.

Thank you Sandi.

I got a CBC and a platelet function test today, in preparation for Wednesday's surgery.

Counts are at 84,000. (Which is fine, but is also a 'dip' since my last counts at 112,000). So naturally, I'm feeling as if I'm back on the downswing of things again, and it really makes me anxious.

Perhaps it's the head cold/stuff I have going on, I am not sure. I am certainly 'anxious' though because I think that I had a nice 2 month reprieve from platelet issues and treatment and now, maybe I'm going back down hill again.

Dein. I had a cold the other week and platelets dropped considerably

I have be prescribed CIPROFLOXCIN to take before and after the surgery. Anyone have experience with this drug?

Causation for an ITP event?

Dein

Don't know if you will be able to access this as it's a UK link
www.medicines.org.uk/emc/medicine/29521 .

Basically in case you can't it says Thrombocytopenia is a rare side effect of Cipro.

I have also looked it up in the latest edition of the British National Formulary (you definitely won't be able to access this because it's password protected for medical and nursing staff) however it describes thrombocytopenia it as a "less frequent" side effect rather than a rare one .

Thrombocytopenia is a possible side effect of every drug so I wouldn't worry about that.

Cipro is a full-on antibiotic and will keep everything at bay.

Thank you both.

One of the negative side effects of these types of antibiotics, has been the tendon issues unfortunately. I doubt my tendon will rupture, but it certain does feel a little tender after taking a couple of doses.

Tomorrow is my nasal surgery, we'll see how it goes.

Deln,

Just watch for reactions to the drug. I can usually tell if I'm going to have a problem with
a drug by the way I feel (tight chest pains, can't sleep at night, etc.).

I've taken Cipro a number of times - in fact it is one of the few I can take, but haven't had it in a long time.

Believe me if you have a tendon rupture you will know - I had the FCR tendon in my left arm rupture last year and the pain was more than excruciating, I'd rather give birth to my 1st born again than have another ruptured tendon!

Regarding pain pills - I was given Percocet last year and the year before after surgery and heaven only knows what they gave me during surgery & in recovery - when the tendon ruptured I was given Tramadol. No drop in count.

Good luck tomorrow!

I've had Achilles Tendonitis in both feet due to that drug. No rupture, but it was hard to walk for a few weeks. It's more common for people who have taken steroids. Sometimes though, you have no choice.

8/12/15

Had my surgery today. Sitting on couch with my nose all beat-up and packed with padding and stints. Obviously bleeding a bit. Lol, there's no way I could have gotten this done on counts of 2,000.

I've been taking CIPRO now for two days. I just hope that when all this is over in 10-14 days, that my platelets maintain a normal/stable count. I am slightly concerned about this as my platelets were "down" to 86,000 . Maybe from sickness, unsure.

I hate this anxiety and worry. I don't want to feel this way, obviously, but I feel like I can't help it.

Deln, try to have little faith. Anything can take platelets down, including trauma to the body from surgery. But even after the cold, the meds, and the surgery, you could still be okay. One day at a time. If counts drop, you will deal with it. You can do it.

Gosh a count of 86 would make me deliriously happy