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TOPIC: New to PDSA, not new to ITP but new to it running so low -- Pain Med Question?

New to PDSA, not new to ITP but new to it running so low -- Pain Med Question? 2 years 6 days ago #59452

  • Debbie82078
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  • I am an adjunct professor or Religious Studies and have been a massage therapist for over 18 years. I have had ITP since 2004 but never low like it is now unless I was really sick.
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I first was diagnosed with ITP in 2004 when I had a flu/cold/something after a hiking trip. A bunch of other health issues began at that time but nothing was every really done. At that time my lowest count was in the 80's. From then until the end of 2010 I averaged between 90-120.
Fastforward to 2011/2012. Started the year in the hospital with levels between 45-60 for about a week. After that I had a bone marrow biopsy that did reveal that I had zero iron stores but otherwise nothing of note. That year I was finally put on metformin for pre-diabetes. Other than that initial problem platelets averaged between 80-110 but slowly since 2015 have dipped often into the 70's.
In 2016 I tried doing a weight regime and everyone seemed to say it would be ok... well it resulted in petehcia on my legs and both petechia and iron staining on the top of my feet. Hematologist said that platelets around 70 would not cause that though even at 110 I was prone to getting petechia on neck and chest.
Had a skin biopsy in Feb 2017 and other than ITP rules it out might have Shaumbergs Disease though again ITP tends to rule it out. The rashes on my legs lighten/darken but have not went away and my platelets stayed in the 70's range for about a year. I learned I had an allergy to dustmites and flonoase brought platelets up into the 90's interestingly but they also brought me high blood pressure. Shortly after that came down with a chest infection that turned into the one sinus infection I have ever had. Oddly my platelets went up to 105 but my bp went up to 175/112.
I got better... but platelets went down... and then further down.

The sinus infection took up a home above one of my teeth which has a cavity but I hadn't addressed.
I knew that I would have to get permission from hematologist to get work done.
Went in Thursday and my count was 57. Hematologist said he could write a consent but was concerned. I was given a consent from and told to come back this coming Tuesday to test again. If my platelets are still below 60 I have a choice of prednisone (hasn't been good to family members) or dexamethasone. We haven't really discussed that my bp since being sick while better is still "high" running around 135/90. He asked if I was bleeding and on Thursday I wasn't.
Yesterday, Friday, I went to a dentist know I would likely get a referral to the jaw surgeon who I had to see in the past for an extraction. It was a full exam with x-rays, examining each tooth, 'digging' for pockets (resulted in bleeding of course), and that icky hammer which hurt on the tooth and close-by teeth. I developed a small headache after that.
Come 8 pm my cycle began (a few days early and very very very heavy - low platelets would lend to that but this ugh) and the headache hasn't let up.
I don't take any pain meds ever really - once in awhile I would take an aspirin (studies tend to point to its safety with itp compared to other meds- odd I know) and even so whenever my platelets were below 80 I would not take anything.. thus I haven't.

Well this morning...
my headache is killing me. I can only really see out of my left eye. My right eye which usually is a bit worse than left with focus can't focus at all, everything is blurry (not just words).
It is the weekend... I go in Tuesday.

Have you taken anything for pain with low platelets? Would you take anything with platelets that are in the 50's?
Knowing I have petechial rashes even at what are usually not considered that low of a number do I have something to be concerned about?
The headache and blurriness... it started with the teeth check, hammering and poking, is it remnants of that or is it ok to be nervous?

I have read a lot of research over the years... never really having super low platelets I never joined any of the boards. But... with these events wasn't sure where to turn as most 'headache thrombocytopenia' searches sound pretty scary but also tend to be with people whose platelets are below 40.

Yes, I know the doctor is the main person to answer questions.. but it is a few days. I don't want to go to the hospital over this but as my husband said if I feel that I must then do it. I just don't know when that feeling is ... just like with my monthly bleeding I have never been good at knowing if it was tooo much.

Thank you,
Debbie

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New to PDSA, not new to ITP but new to it running so low -- Pain Med Question? 2 years 5 days ago #59453

  • Hal9000
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I think there are a lot of members here that, given enough time to read your post, would recommend to go to the hospital with little reservation. I'm not so fast with the draw. If you've never experienced a headache like this before seems like talking to a doctor, and letting him do tests, would be the logical thing to do.

Good luck...

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New to PDSA, not new to ITP but new to it running so low -- Pain Med Question? 2 years 5 days ago #59454

  • Debbie82078
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  • I am an adjunct professor or Religious Studies and have been a massage therapist for over 18 years. I have had ITP since 2004 but never low like it is now unless I was really sick.
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I am not so fast...and emergency rooms on the weekend are never ideal either.
I suppose I will wait and see for now... I might go ahead and take a single aspirin and see if it helps.. I have read before where oddly aspirin doesn't have as great an influence on platelets as the various nsaids out there.
If I still have the headache tomorrow I will probably go to the er.

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New to PDSA, not new to ITP but new to it running so low -- Pain Med Question? 2 years 5 days ago #59455

  • Sandi
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Since your situation seems to be a bit unique, I wouldn't want to advise you on the medication. Symptoms at those counts are rare and something else could be going on that affects platelet function.

If you truly have vision loss, it might be best to get that checked out. Clots with ITP, even at lower counts, are not unheard of.

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New to PDSA, not new to ITP but new to it running so low -- Pain Med Question? 2 years 5 days ago #59459

  • momto3boys
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Wow Debbie,

It sure sounds like you have a lot going on. I hope that your headache and vision issues resolve, that sounds pretty miserable.

Your platelets have been high enough for most of your time with ITP that you haven't required any treatment (lucky!). That is great. Lots of doctors just do watchful waiting with any counts above 30,000. I just thought I'd throw out that I've never taken aspirin (any salicylates) or ibuprofen, as I've always been told (I've had ITP since I was a child) that those are big no-nos because of their platelet reducing effects. I've pretty much just done tylenol (no negative platelet indications) whenever I needed pain relief (very infrequently).

Certainly do your research, but I'd reevaluate the idea that aspirin is okay for ITP patients. Here's a blurb about how aspirin works against platelets:

Aspirin inhibits platelet function by acetylating platelet cyclooxygenase, increasing the risk of bleeding because it adds a platelet functional defect to the quantitative defect already present from the severe thrombocytopenia. In addition, platelet dysfunction may be induced by the platelet antibody, which is potentiated by the superimposition of the aspirin-platelet defect. Because of this effect, aspirin is contraindicated in persons with ITP.

Again, you have a lot going on, so sometimes these guidelines vary based on need (if you have other conditions that require the blood thinning effects of aspirin as advised by a doctor) versus potential harm.

I know what you mean about the ER on the weekend. I hope you manage to avoid a trip! Good luck.

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New to PDSA, not new to ITP but new to it running so low -- Pain Med Question? 2 years 5 days ago #59463

  • rhoda
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Debbie82078 wrote: Well this morning...
my headache is killing me. I can only really see out of my left eye. My right eye which usually is a bit worse than left with focus can't focus at all, everything is blurry (not just words).

this is the worrisome statement in your entire posting.
if you have never experienced anything like it before, then i'd suggest that it needs evaluated.

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New to PDSA, not new to ITP but new to it running so low -- Pain Med Question? 2 years 5 days ago #59464

  • Hal9000
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How are things Debbie? Did the aspirin help, or ?

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New to PDSA, not new to ITP but new to it running so low -- Pain Med Question? 2 years 5 days ago #59465

  • juliannesmom
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Debbie,
With a headache affecting your vision, and elevated bp, I hope you did not and will not take aspirin. No one likes the ER on a weekend, but I think this is one time you should go.
Norma

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