TOPIC:

Hello,
Diagnosed 12/4/19 with severe bruising, oral blood blisters, fatigue at 10000, given 40mg dexa x 4 days, IVIG; within 10 days level back to 34000, IVIG again, up to 42000 after 18 days, finally saw hematologist and started treatment. 20mg dexa x 4 days and 50mg Promacta, increased to 171000!!!! (labs drawn day after last dose of dexa). Presently, on 8th day of 50mg Promacta, not feeling well!! Severe fatigue, muscle aches, stiffness, weakness, no stamina, low grade constant headache; really having a hard time!! Finally my question!! Do these symptoms subside?? It seems they are from the Promacta since dexa was a small dose. I have changed to taking Promacta at night, hoping my days might be easier with less symptoms. I understand I need to be patient to see what/which treatment is most effective, but how long does one wait?? How long does one endure these side effects severely limiting my quality of life? I am thankful for PDSA it has been very helpful to know I am not alone. Thank you for any input provided. Be well.

Even though you only had 2 Dex pulses that sounds very much like steroid withdrawal to me. I suggest you seek medical advice.

20 mg dexa is the equivalent of 133 mg of prednisone so it is no small dose. It also has a very long half life so takes a long time to get out of the system. Hang in there, it will get better.

JJ
I'd forgotten about lengthy half life of Dex, makes me more inclined to think HPA axis suppression.
Jmohr316
If you are suffering from adrenal insufficiency post steroid dosing your system will be stressed. Try adding in vitamin C adrenalfatigue.org/got-stress-you-need-vitamin-c/.

Jmohr316, any idea about what might have triggered ITP?

According to my responses to treatment, looking at your table Hal9000, I am a row 1, I have not been tested for EBV, nor have any history. Does this change treatment??

Jmohr316, I don't see that you've taken Prednisone. Dex was with IVIG at the same time. So steroid response isn't clear. When you took IVIG (with nothing else) the second time and counts were 42 after 18 days, was there another measurement made? Say, one at 9 days or one at 27 days?

Hard to say what row(s) is at play. Not enough data. That is why I was asking if you had an idea about what the trigger might have been. Not sure, or ?

Have your counts stabilized on the 50 mg dose of Promacta? Did the low grade constant headache turn out to be because of too high of counts?

I had a constant headache for two and half days right after IVIG (alone) treatment. I don't know what counts were during the headache but several days later counts were a bit over 300. No one told me. I probably could have gotten rid of the headache, with a baby aspirin or two, right when the headache started. Tylenol was a waste of time. One shouldn't expect such a drug to have an effect on a blood clot - it's a fool's errand.

Hello, been on Promacta since Jan 22 counts have been btwn 170-280 with a dip last week to 90. Had really severe seasonal allergies when blood was drawn, not sure if that could have caused the drop from 256 in 2 weeks (on vacation so misses a week of labs). Have been experiencing severe muscle/ joint pain since starting Promacta 50mg. See the hemo every 6 weeks ( now just a phone consult due to COVID19.) Today was told to stop Promacta and will change to 25mg when obtained from pharmacy. Seems drastic but to alleviate these symptoms would be great. Also, hemo mentioned possibly starting doptelet if aches return with 25mg. So... I seem to be doing pretty good!?

Jmohr316, that is a big range for counts.
With the allergies, that reminds me of user 'DeeDee Marie'. Likewise, allergies has an affect on her counts. Hay fever rings a bell. Since she responds well to either Dex or IVIG alone, she is definitely row 1 in my treatments table. If you end up on a 25mg Promacta dose successfully, that would be the typical row 1 dose.

On EBV. They say that a large proportion of folks have EBV and IgG antibodies against it, and are thus afflicted, but don't recall having an instance of it's major symptoms. IMHO, that is likely because someone kissed them as a baby, passed the virus on, and they were too young to remember being sick with Mono. For ITP, the nice thing about row 1 is the option of Rituxan treatments and it's associated potentially long full remission possibility. But, the drug does have nontrivial risks associated with it.

I myself, am not familiar with muscle or joint pain with Promacta. Seems like I do remember some folks reporting bone pain/twinges with higher doses in the past. Like on one's finger and toe bones maybe? Halving the Promacta dose should help significantly, if related.

Doptelet, being 4 times more powerful bone stimulating drug, doesn't sound like a good option to me for less side effects. Plus, they only have 20mg tablets, making it about the same as 80mg of Promacta. Way too strong, by about a factor of three.