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My Promacta Journey 4 years 3 months ago #57326

  • Sandi
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It IS good news! I hope it keeps getting better for you!

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My Promacta Journey 4 years 3 months ago #57336

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94 ? ?, LOL you're short by 6 from 100.

This is a fun game. Guess Mom's Promacta Dose.

Looks like your just short of half current dose. So maybe about 1 day of 75mg and 6 days of 50mg at this point. Yes, a noticeable improvement over last test's 3-4 split.

Can you live with a 40 to 50 count with a 50mg dose 7 days a week?

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My Promacta Journey 4 years 3 months ago #57476

  • mrsb04
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Thinking seriously about trying Promacta in the new year. The one thing that bothers me is the dietary restrictions surrounding calcium. Is is really so strict that one cannot have a spot of milk in a cup of tea?

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My Promacta Journey 4 years 3 months ago #57484

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When I was taking promacta, I did a lot of research about calcium.


Main restriction was on the pill form (multivitamins) of calcium and not on milk, still I did stop milk just so I dont take any chances.

Also restriction goes away if 4hours before or after the medication.

I used to take it around 2am, so I was clear by 7am.

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My Promacta Journey 4 years 3 months ago #57489

  • Sandi
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Mrs. B, as Jay did, many people take it in the middle of the night so they are good to go as far as food. I'm sure others will pipe in with suggestions. :)

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My Promacta Journey 4 years 3 months ago #57496

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My haema says don,t worry about a spot of milk in tea or coffee but don't eat any dairy foods or take an indigestion antacid like Rennies or gaviscon containing calcium or magnesium or a multivitamin with iron ,aluminium selenium or zinc 4 hours either side of your pill. Full instructions come with the pills, along with a scary list of side effects of which I've had none . You should however have a liver function blood test every 3 months just for safety. When I eat late I just take my pill in the middle of the night. As I never sleep right through to the morning that's never been a problem. After a whole year on 75 mg daily of Eltrombopag I seem to be stable at about 65 and I am truly grateful to the NHS in Scotland for unquestioningly providing my treatment and enabling me to lead a normal life.

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My Promacta Journey 4 years 3 months ago #57500

  • mrsb04
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Thanks for that Margaret. The thought of going 8 hours without a cuppa on the night shift was disconcerting.
I've looked at patient information leaflets from 4 different continents all of which give slightly different information.

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My Promacta Journey 4 years 3 months ago #57516

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Shift work certainly doesn' fit well with the requirements of eltrombopag which probably works best with a regular regime. I just accept that during holidays and at times such as Xmas when meals are irregular my absorption might be less than optimum ,which is not so problematic in the short term if the count is relatively good. You also have to bear in mind that a bout of sickness or diarrhoea could lower absorption too. The good news is that absorption,at least for me, does not seem affected by alcohol! I hope that you see an improvement but don't let your haema give up too soon if you are slow to respond. After me apparently losing response to eltrombopag at 50 mg daily over 8 weeks in 2015 I was taken off it but in the absence of anything else being effective I restarted it 6 months later and gradually, over a year on the higher dose of 75 mg ,went up again from 3 to 65.
All the best for the New Year.

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My Promacta Journey 4 years 3 months ago #57583

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mrsb04 wrote: Thinking seriously about trying Promacta in the new year. The one thing that bothers me is the dietary restrictions surrounding calcium. Is is really so strict that one cannot have a spot of milk in a cup of tea?


I was out of town and am just now seeing your question. I used to wake up around 2AM and take my Promacta. I have always been pretty strict about maintaining a 4 hour window of "no food" around taking my pill, just to make sure I get all of the absorption I can. The medication insert says that you can do 2 hours after and 1 hour before eating (I think?) not including dairy, iron supplements, and a few other things that need more of a "buffer time" away from taking your pill. I consume plenty of calcium containing foods during the day and this was really no big deal (after having 3 kids, I am definitely up at some point during the night to use the bathroom).

Lately, I have actually started to take my pill at bedtime and then take my iron during my middle of the night bathroom break (making sure that at least 4 hours have elapsed between the promacta at bedtime and the iron pills). I try to get 3 hours after dinner with no food (sometimes I do 2 if I eat a bit later or sleep a bit earlier), but no less than 2. I also tend not to eat any calcium with my dinner, so I don't have to do the 4 hour calcium wait.

I'm still anemic, and iron absorption can be affected by a bazillion things, all of which I want to eat for breakfast, so I find it easier to do that one at night to have my morning tea :)

Anyway, probably more thinking about taking this medicine than you wanted Mrs. B! But yes to tea and calcium!

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My Promacta Journey 4 years 3 months ago #57584

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Margaret k wrote: My haema says don,t worry about a spot of milk in tea or coffee but don't eat any dairy foods or take an indigestion antacid like Rennies or gaviscon containing calcium or magnesium or a multivitamin with iron ,aluminium selenium or zinc 4 hours either side of your pill. Full instructions come with the pills, along with a scary list of side effects of which I've had none . You should however have a liver function blood test every 3 months just for safety. When I eat late I just take my pill in the middle of the night. As I never sleep right through to the morning that's never been a problem. After a whole year on 75 mg daily of Eltrombopag I seem to be stable at about 65 and I am truly grateful to the NHS in Scotland for unquestioningly providing my treatment and enabling me to lead a normal life.


That's great Margaret! Definitely I think the supplements are more worrisome than just a bit in the diet regarding affecting absorption. Congratulations on achieving an equilibrium with dosage and count. I'm still working on that :)

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My Promacta Journey 4 years 3 months ago #57586

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Hal9000 wrote: 94 ? ?, LOL you're short by 6 from 100.

This is a fun game. Guess Mom's Promacta Dose.

Looks like your just short of half current dose. So maybe about 1 day of 75mg and 6 days of 50mg at this point. Yes, a noticeable improvement over last test's 3-4 split.

Can you live with a 40 to 50 count with a 50mg dose 7 days a week?


Nope, pure ratios of dosage to count really just don't work with this medicine, or at least not for me!

When I started on 50mg, I was not able to get a count much above 30. I despaired of having a response and having to try another treatment. We brought my dosage up to 75mg, and I finally was able to get a rise in counts. Then I started to decrease down, but not in the small increments that I have since learned to do. I ended up going too low and bumping up my dosage slightly again didn't improve my counts. 75mg seems to be my magic "let's get this started" number, and I have to go down really slowly from there. I'm still not at an equilibrium with my numbers like it sounds like Margaret is. At 75mg my counts start creeping too high, but I haven't yet found a sweet spot dosage that allows me to hold in the target range. Just going to 50mg, especially too quickly, brings about a crash back to the 20s and 30s. Sadly, no mathematical model to get the dosage just right.

From the reading experiences of others, there can be a delay between a change in dosage and the reflection of the effects in the counts. I'm still tweaking (slowly!) to try to get the right balance.

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My Promacta Journey 4 years 3 months ago #57590

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My gradual increase in platelet count followed on from a dire period in 2015 when I was low in red and white cells as well as platelets and had ineffective bone marrow.I too was very anemic then and I was told I had indications of cold agglutinin haemolytic anemia. However I got Rituximab Nov '15 and restarted Eltrombopag in the Dec and from that point all my counts began to improve.Now my red and white cell counts are normal .Maybe it was the combination of Rituximab and Eltrombopag that did the trick because initially Rituximab alone seemed to be ineffective, as was 50 mg eltrombopag by that time. I have since read a French piece of research in Blood journal describing the effectiveness of combining an immunosuppressant and a TPO in refractory patients ,especially those like me who are refractory to steroids and IVIG. The article said that the immunosuppressant dampened down the immune response and allowed the eltrombopag to become more effective . I am so glad to be no longer anemic as iron pills made me feel so ill I could not take them.
Apparently Eltrombopag is now a recognised treatment for those who have aplastic anemia ie,bone marrow failure

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My Promacta Journey 4 years 3 months ago #57599

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Question for you Margaret. What was thinking in Nov of '15 to be treated with Rituximab? Something that would help with cold agglutinin anemia, or with platelets, or ?

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My Promacta Journey 4 years 3 months ago #57600

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Ha! Mom. Your thinking I'm trying to get the right number. I'm quite content in just getting you to think more about it and you getting the right number. That the dose should be delayed 1 or 2 weeks is a vitally important realization.

Interesting about the 75 mg dose history.

The question is can you get your guess to be better than my naive one, LOL

The assumption I've made in dosing is that if 50 mg produces a count of 50, does 75 mg produce a count of 100 (assuming all other influences are not changed). Is that a correct assumption on my part?

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My Promacta Journey 4 years 3 months ago #57622

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Rituximab was tried because I had gradually, over the previous 9 months become less responsive to both Promacta at 50mg and Romiplostin at max dose for 4 weeks.My count was not getting out of the low teens. I tried watching and waiting first but crashed to 1. A month after the Rituximab infusions I was still at 3 and was found to have very poor bone marrow on biopsy but as soon as 75 mg of Promacta was added I started to improve on all counts. He did say that the Rituxan has been found effective for cold agglutinin but my symptoms didn't really fit with the lab finding --I didn't get blue or feel the cold excessively.My haema regards me as a bit of a mystery but is very pragmatic and happy to give me what works .I would like to have another biopsy just out of interest but he is not in a rush to do one he says. As I am costing the NHS a lot anyway I am not pushing, just content to be relatively normal for the present.

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My Promacta Journey 4 years 3 months ago #57633

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Thanks for the input Margaret! I'm filing your treatment information away in my brain for future use. If I get to a point where I am no longer able to manage things with just the eltrombopag, I'm looking towards Rituximab as a potential next step (hopefully I won't need that, but it's good to think ahead :)

It definitely makes sense that those two together might work out in a case where Rituxin doesn't seem to do enough on its own. Tackle the issue from both ends.

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My Promacta Journey 4 years 3 months ago #57634

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Hal9000 wrote: Ha! Mom. Your thinking I'm trying to get the right number. I'm quite content in just getting you to think more about it and you getting the right number. That the dose should be delayed 1 or 2 weeks is a vitally important realization.

Interesting about the 75 mg dose history.

The question is can you get your guess to be better than my naive one, LOL

The assumption I've made in dosing is that if 50 mg produces a count of 50, does 75 mg produce a count of 100 (assuming all other influences are not changed). Is that a correct assumption on my part?


As I mentioned before Hal, your assumption definitely doesn't hold in my case. The idea of the count itself being some kind of a "fixed" number is really just not accurate. It depends on many factors. The particular blood sample collected on any given day, patient hydration level, immune function, etc. The body system isn't as simplistic as "medicine in = number out." I sure wish it were so simple sometimes :)

It's my understanding that a count of 50 doesn't mean exactly 50. It might be in a range +/- the actual lab number. Counts float and chasing a particular exact number isn't beneficial.

Regarding guessing my own counts, I don't do that at all. I observe symptoms and keep track of overall trends to ensure that I'm not going too high or low. After a lifetime of blood work for this condition, I've been surprised more times than I can recall. Sometimes you just get a wonky, outlier number. Worrying about blips in count numbers would be really stressful, so I definitely try not to do that.

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My Promacta Journey 4 years 3 months ago #57652

  • mrsb04
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Mom
Very well put

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My Promacta Journey 4 years 3 months ago #57716

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It's lab day:

1/11/17 plt 48,000
dosage 75mg Promacta 4x weekly alternating with 50mg Promacta 3x weekly

Right in the target zone with the count. I'll go back in two weeks for another check, but maybe this will be the dosage that keeps me in a good range! 50 is too low, and a full 75 is too high. I will update again after the next count.

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My Promacta Journey 4 years 3 months ago #57720

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Right on target! Don't change anything, LOL

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My Promacta Journey 4 years 2 months ago #57912

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Time for the Biweekly Lab Update
1/25/17 plt 37,000
dosage 75mg Promacta 4x weekly alternating with 50mg Promacta 3x weekly

I was bleeding like a crazy person after today's stick (soaked through the gauze and tape and bled all over my sleeve, that was kinda strange), and the numbers are inching a bit low. I'm probably going to add in another 75mg day (so 5 days at 75mg and 2 at 50mg) to see if that is a better mix.

Will update again in 2 weeks. Maybe if I can stop reading about the political horrors that are causing stress that will help my counts, lol!

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My Promacta Journey 4 years 2 months ago #57919

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As others have said, I always took my Promacta in the middle of the night. But sometimes I was so asleep when taking it that I couldn't remember in the morning. So started using a little bowl for the pill- then went to a medi- set. If a person is on night shift, perhaps taking it during the day would be best- whenever you sleep. Also I'll mention, I was refractory to 25mg of Promacta in 2014- it did nothing. Had to go to 50mg. Then tried again in 2015, started out on 25mg and it bumped my counts right up!

Funny about trying to predict the counts according to dosing with the TPOs! good luck with that- haha. There is the factor of the drug dose, and theres platelet production and destruction going on all the time, plus a myriad of other factors. And like was mentioned that it can take a couple weeks to get the full effect of the dose- the doses can kind of piggy back on top of each other esp. with Nplate.
I'm on Nplate and the counts seem to have NO correlation to the doses. Sometimes I think raising the dose lowers the count (?!) perhaps my immune system is reacting by cutting back on something else? Don't know but its quite unpredictable! Past 6 mos. I have been moving between 3 different doses of Nplate. Depending on my counts, dose is raised or lowered. Here are counts for each of the 3 different doses--
412mcg-- 79 79 32 41 39 57 21 53 58

453mcg-- 82 70 3 64 5

495mcg-- 45 82 33 76 53 325

Sometimes it seems like it makes no difference what the dose is if its in the 400mcg range. All said, I really think that its best with Nplate (for me anyway) to just find a dose that works and leave it alone. Let the body do the adjusting and let the Nplate be the constant.
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My Promacta Journey 4 years 2 months ago #57923

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Oh my 37. Things do look uncontrollable. Kinda like there is the expected 2 week delay and then another delay of perhaps 4 to 8 weeks.
Here is a thought. Do you suppose a week of 75 straight followed by going back to a 4/3 split for the second week might be good?

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My Promacta Journey 4 years 2 months ago #57935

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Thanks for your input regarding Nplate poseymint! I found your discussion really useful. While my counts aren't quite as "up and down" as yours seem to be, I've definitely noticed that I haven't hit any kind of consistency with one dose producing vaguely regular numbers. I am pretty much staying at the same dose with only minor tweaks a day or two out of the week. After reading your discussion I'm even more inclined to just hang out at about the dosage I'm at unless I get several "too low" blood tests in a row. I think I've perhaps been too quick to want to change things up, even in really small increments. Ups and downs are just part of the process, and I like your comment about letting the body do some of the adjusting, not always the dosage.

I agree about the maddening number of variables. Just considering diet alone there are so many factors and nutrients/ingredients that can affect things. Again, I really appreciate your input! You are a great source of TPO-RA data :)

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My Promacta Journey 4 years 2 months ago #57936

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Hal9000 wrote: Oh my 37. Things do look uncontrollable. Kinda like there is the expected 2 week delay and then another delay of perhaps 4 to 8 weeks.
Here is a thought. Do you suppose a week of 75 straight followed by going back to a 4/3 split for the second week might be good?


I got a bit of a giggle from your comment Hal. "Uncontrollable" struck me as funny :lol: I'm absolutely thrilled to be getting any kind of a response, so I'll take this brand of "uncontrollable" :)

I am encouraged to do even less tweaking of the dose as per poseymint's comments above, so I'll just sit tight unless things go too high, or too low over multiple checks. It's always an adventure with our ITP!

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My Promacta Journey 4 years 2 months ago #58074

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Lab Update
2/8/17 plt 18,000
dosage 75mg Promacta 4x weekly alternating with 50mg Promacta 3x weekly

Well, I got treated like the naughty kid in the principal's office yesterday. Pretty low count, which triggered the lab workers to "call a doctor over." Apparently you trigger this "alarm" with any count below 20, lol. My doctor is out of town so I got the stink eye from another doctor in the practice that made me feel like it was my fault that it was low and I wasn't managing well. It was kinda funny, but I went into my 'comfort the doctor' spiel "I think I had a bit of a virus and that dropped my counts. Yes, of course I will increase my dosage going forward. Yes, of course I'll come in next week for a count, I expect this is just an outlier."

Honestly, I'm not having mouth blood blisters and other signs that usually indicate a fairly low count for me. Either the number was off, or promacta has changed the very nature of my platelet biome and gives no symptoms with a lower count, hahaha.

Regardless, I'm going to increase back to 75mg daily and be compliant for the moment. I really wish they didn't make me agree for another count next week; I would like another buffer week for things to settle. But they literally stood beside me as I made the lab appointment for next week. Sheesh! I will say doctors are in such a hurry a lot of the time. I guess they have to put up that front so they aren't liable for letting patients wander out without being advised of the dangers of a low lab result. I may have to push back at them if I'm not ready to move to something else on their rapid timeline. My doctor is a little better than the one I saw, so hopefully she won't start itching to move on to Rituxan and call off the promacta just yet :) As long as I'm not having symptoms, I don't care too much about what number the lab result technically came back as.

I made some extreme dietary changes (going all the way onto autoimmune paleo (but keeping the eggs for now)) in the hopes that diet might help things along and reduce my need for medication. I figured it can't hurt, and cutting out so many food groups is an easy way to lose weight, so win-win. However, it is understandably an adjustment to the body to deal with the new diet and that probably didn't help my counts in the short term. Today is day 5, and I'm feeling pretty darn good. Tons of veggies, fruits, lean meats, and eggs. Basically cutting out all the junk. I miss dairy and my coffee, but I may add those in down the road to see how they affect things once I reach an equilibrium with the diet.

That's my long-winded update for now!

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My Promacta Journey 4 years 2 months ago #58077

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momto3boys wrote: Honestly, I'm not having mouth blood blisters and other signs that usually indicate a fairly low count for me. Either the number was off, or promacta has changed the very nature of my platelet biome and gives no symptoms with a lower count, hahaha.

The Promacta is probably the reason. You are producing scads of new healthy big fat STICKY platelets that aren't living long enough to grow old.
If your CBC gives the mean platelet volume (MPV) it is probably very elevated.
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My Promacta Journey 4 years 2 months ago #58086

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Rob16 wrote:

momto3boys wrote: Honestly, I'm not having mouth blood blisters and other signs that usually indicate a fairly low count for me. Either the number was off, or promacta has changed the very nature of my platelet biome and gives no symptoms with a lower count, hahaha.

The Promacta is probably the reason. You are producing scads of new healthy big fat STICKY platelets that aren't living long enough to grow old.
If your CBC gives the mean platelet volume (MPV) it is probably very elevated.


Sadly we've got the bargain basement CBC at my office, so no MPV data. That certainly makes sense though. Just having ITP has always meant that I don't have much in the way of old platelets because they have been eaten up. But with the functionality of Promacta, I am even more skewed towards a higher percentage of fresher platelets. Explains some of the different nature of my clotting now too. I'll have to keep track of other effects I notice as we go along.

Thanks as always for your informative input!

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My Promacta Journey 4 years 2 months ago #58087

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It also explains the increased risk of thrombosis!

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My Promacta Journey 4 years 1 month ago #58179

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I forgot to put up my lab results from this last Wednesday:

2/15/17 plt 28,000
dosage 75mg promacta daily

So the count is up from the 18,000 of last week, and it was good enough to avoid chatting with the doctor :)
I managed to catch another cold and was sick on Wednesday, but luckily it hadn't tanked my counts yet, so I squeaked by. I made my next follow up for 2 weeks out, and hopefully my numbers will sort themselves out from sickness by then.

Still making dietary modifications in the paleo vein (and losing some weight, yahoo!), but my body seems to have settled a bit more into my new eating routine. I will update after my next count.

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