Diagnosed May 2016

Hi All,
I'm still quite new to ITP so any info / advice is always welcome. I've been browsing the board and it's such a wealth of knowledge! Thanks to all the posters who contribute with their thoughts and experience with ITP.
So far my journey has been simple and incidence free, and we are watching & waiting. I'm a 42yo mum of 3 from Australia. I had a cbc in January for chronic pain issues, test had an abnormal platelet count of 79. Had a repeat test & it came back the same. GP arranged for me to see hema and ordered more tests, most of which I have no idea what they are and doesn't really matter as they were all normal except for iron studies, WCC & MCH.
By the time I saw hema in February platelets had dropped into 50s. My hema is awesome, he's very relaxed and will not consider treatment unless I drop below 30. He has done loads more tests that he said will help him to decide best form of treatment should I need it. He also arranged for me to have an iron infusion as my levels were pretty bad (5.7 iron, 7 saturation and <6 ferritin) and arranged for me to see him every 3 months, getting a cbc just before I see him. He also wants me to get a cbc whenever I notice an increase in bruising. I don't bruise easily, but since January I've noticed times when I'm literally covered in bruises on my arms, legs, hands and stomach, ranging from dots to grapefruit sized bruises. My hema thinks that my levels are dipping below 50 when I'm bruising, last count was 44, but I don't think I caught it at its lowest as I had the test about 2 weeks after the bruising started.
When I saw the hema in May, he diagnosed ITP. Said that if I was 10 years older he would do a BMB but at my age he doesn't think it necessary (yet). I'm seeing him again next month, just for routine check up.
I know how lucky I am that my range so far has been 40s -70s and apart from bruising there hasn't been much impact. I guess the hardest thing is that I can no longer take anti inflammatories for pain issues. I have severe arthropathy throughout all facet joints in my spine and major disc degeneration, so am in constant pain. It's currently 3am and I can't sleep for the pain. Thank goodness for my trusty ipad!
Gosh sorry this is so long.... Blame my lack of sleep for not being able to keep it simple. I do have a question in all this. As my hema wants to catch my lowest levels , how do I know when to get tested. I know that platelet have a relatively short life, so don't know when to get tested. I feel a bit silly running off to get tested at the first sign of a bruise. Do you wait til you have 5 or 10? I have noticed that my dermatitis gets worse when Im bruising up. And lately I've got a constant taste of blood in my mouth, like there's a small bleed on my lip, and today I have a very sore gum with what looks like a sore.
Also should mention that in tests done in February it says that red cells appear normochromic, also mild leucopenia. Does that mean anything to you?
Final thing, I've also noticed that waxing my legs is very different to before. Now my legs remain red for 24-36 hrs after and very often I get inflamed and infected hair follicles after waxing. Has anyone else found this?
Thanks all for putting up with this long and rather boring post! I'm still in the process of trying to arm myself with info and get to know any signs to watch for. I'm very grateful that so far I've got nothing to complain of and hope it stays that way.
Cheers,
Erica

Hi Erica. Welcome.

It seems as though your Hemo is doing the right things. The only way to 'catch' your count low would be to get a count done. You could call his office when the bruising gets bad and see if they will take you that day. I used to do that with my Hemo's office all the time; I would just go in if I thought I needed a count. I didn't even see the Hemo. His office would call me if they wanted me to treat and we'd discuss it.

As for the joint pain, have you seen a Rheumatologist? I have joint pain due to Lupus and have also had spinal stenosis twice due to disk degeneration. I've been right where you are now. I used to go to a pain management clinic and have had treatments that didn't include NSAID's. A few: Steroid injections into the neck and upper back muscles. TENS Unit. Heat and massage. Acupuncture mat. Those things did help.

Hi Sandi,
Thanks for your quick reply & advice. In terms of back & neck pain, this is something I've been dealing with for 20 years, apart from severe degeneration I also have stenosis and nerve damage. Have had numerous injections, physio, osteo and even tried Chinese medicine (not something I'd bother with again). My pain management specialist & neurologist want me to take Lyrica, but that is something I refuse to do. I managed to stop taking OxyContin after 5years of constant use, but then noticed that I was taking far too many over the counter pain meds. 2 years later I was put on tramadol to stop the over the counter stuff, and have recently stopped that as I didn't feel it was effective anymore and is a horrible med anyway. So now Im seeing a myotherapist, and sticking to heat packs and just feeling the pain. I think having the itp diagnosis has been a great wake up call to start looking after myself. Especially as so far I haven't had any issues apart from some bruising.
Thanks again, I hope you're feeling well today.
Erica
Oh and what is an acupuncture mat?

Have you had surgery for the stenosis? I've had it done twice, the last one was a few months ago.

I made the mistake of trying Lyrica years ago. It worked great at first and for the first time in years I felt completely normal. The side effects began within the first week and after a month, I became so confused that I didn't remember how to get home from work (it was a 10 minute drive). I quit that day and went through hell with withdrawal. Never again!

This is the acupuncture mat. It helps a lot if you can stand the pain of the sharp plastic. That doesn't bother me because it distracts from the real pain.

www.amazon.com/ProSource-Acupressure-Pillow-Relief-Relaxation/dp/B00I1QCPIK/ref=sr_1_1?ie=UTF8&qid=1468591602&sr=8-1&keywords=acupuncture+mat

Thanks so much for the advice Sandi. I'd not heard of an acupressure mat, but now I want one! I'm just looking into options that deliver here. I haven't had any surgery on my back or neck as it's something I want to hold off for as long as possible. How did your recent surgery go? I hope it was a success. I find it hard to understand how Lyrica is even legal, all i ever hear is Lyrica horror stories. I'm glad you managed to stop taking it and hope you haven't had any long term effects.
Thanks again,
Erica

I had the surgery as soon as stenosis was diagnosed. I didn't want damage to nerves although that is happening anyway and we don't know why. Keep an eye on it to be sure the disks are not impinging on the spinal cord. I waited too long both times.

Yes, Lyrica is horrible. I've heard that some people think it's wonderful and they have no side effects. I don't know how that is possible. It did work, but the side effects were awful.

Erica --

Increase dermatitis? Yes.

Busted l5/s1 in my back? Yes.

I go to the chiropractor for the last 20 years. I tried EVERY single pain medication out there (Vicodin, oxy, vioxx, Celebrex, Aleve, etc.). To this day, I still believe that this was one of the major contributions to my itp (just my personal opinion with zero medical information). I destroyed my body in my 20s (football) and instead of getting to the problem, I took medication. I am down to an occasional Tylenol and a bi weekly tune up. I will NEVER be the same, but I know that I can deal with it. I can play with my kids, garden, walk, take steps at work, etc.

Be happy. Be healthy. Love yourself.

Tim

Tim, I think you may be on to something with your theory of pain meds being a contributing factor. I've been wondering the same thing as I've taken way more than my share of pain meds in my life. I'm very lucky to have found an awesome myotherapist who has helped more than any other professional has in the past 20 years. Lol, if ever he changes practices or moves I'll have to stalk him!