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Hair Loss with ITP or Treatments 2 years 4 months ago #69371

  • sonyalea
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I've been treated for ITP/low platelets since last September 2019, first with dex then Prednisone, neither of which worked. IVIG is saving me when my platelets drop to less than 15k. I have just begun treatment one of four for Rituxin, as that's my hematologist's recommendation as the best chance for remission. Last month (before Rituxin) I've been losing handfuls of hair. I may have alopecia areata, which is hair loss brought about by an immune condition. "The condition occurs when white blood cells attack the cells in hair follicles, causing them to shrink and dramatically slow down hair production. It is unknown precisely what causes the body’s immune system to target hair follicles in this way." There's no evidence this is caused by stress. I've put out calls to dermatologist, GP, and naturopath. There may be no cure. I'm wondering if anyone here has had this patterned hair loss with ITP or other immune condition? If so, what's been successful? Thank you for your help.
Sonya

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Hair Loss with ITP or Treatments 2 years 4 months ago #69436

  • Hal9000
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sonyalea, looks like Alopecia has been mentioned/discussed a few times here on PDSA forum. Take a look through these posts.
pdsa.org/discussion-group/search.html?query=alopecia&searchdate=all&childforums=1

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Hair Loss with ITP or Treatments 2 years 4 months ago #69441

  • sonyalea
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Thank you. I did a search and only came up with a few of these. So many possibilities. Let the sleuthing begin.
Sonya

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Hair Loss with ITP or Treatments 2 years 4 months ago #69507

  • Hal9000
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sonyalea, how are things?
Like you, I don't respond to steroids. Rituxan did nothing for me. Same with you? Rituxan didn't work?

Another question. You mentioned IVIG works. It works for me too. How long does it work for? A week or so, or, a month or so? It's a two day infusion or four day infusion?

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Hair Loss with ITP or Treatments 2 years 3 months ago #69578

  • sonyalea
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I'm waiting on my results for Rituxin. How long does it take before you know if it worked? IVIG works for three weeks, and I've done a two-day and a one-day infusion. IVIG is hard on my body, headaches, deep fatigue, and nausea, though I'm getting some relief at infusion time now.

My hair loss may be from the physical stress of treatments. Dermatologist appointment in three weeks. I just started acupuncture, and I feel really great about that since my energy is returning, and hopefully soon my hair too!
Sonya

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Hair Loss with ITP or Treatments 2 years 3 months ago #69601

  • gozorakgogo
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I had 2 IVIG treatment on consecutive days during my first hospital stay and experience with ITP 3 weeks ago. My level was at 9 brought up from 2 when I checked in from 4 consecutive days of Predisone. They went to IVIG the last 2 days in hospital and my level went up to 46. I was like this is great, Im cured, back to normal. Nope, levels plummeted back down to 2 within 6 days and back into the IV Hotel. Also I had a terrible reaction 2 days after the last IVIG infusion. Terrible in that I felt like I had been rolled over by a dumpster truck and I had the worst continuous headache in a long long time. I rarely get headaches so that could have been that im a big baby when dealing with them...called the hospital nurse line and told me to take Tylenol and all would be better...it did get better after the Tylenol. I should have called them early that morning instead of waiting all day suffering in the bed

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Hair Loss with ITP or Treatments 2 years 3 months ago #69605

  • sonyalea
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This has been my reaction to IVIG too. The migraine meds at the hospital do not continue at home, and so my sensitive body needs to go slow and avoid stimulation, as well as take Tylenol.
Sonya

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Hair Loss with ITP or Treatments 2 years 3 months ago #69606

  • MelA
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Unfortunately that is one of the side effects of IVIg

www.ncbi.nlm.nih.gov/pmc/articles/PMC6008653/#:~:text=Headache%20post%20IVIG%20is%20a,immunoglobulin%2Drelated%20headache%20in%20detail.
Headache post IVIG is a common adverse effect. More than half of patients develop headaches after immunoglobulin administration. Many studies have reported headache as an immunoglobulin-related adverse effect, while no studies have described the characteristics of immunoglobulin-related headache in detail. Jun 8, 2018
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Hair Loss with ITP or Treatments 2 years 3 months ago #69630

  • Hal9000
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I'm waiting on my results for Rituxin. How long does it take before you know if it worked?

It depends on the study one reads. Some say up to 6 months. Most often I'd say counts will begin to go up by the last treatment. But for sure, some take several weeks longer.

Since I don't have bleeding issues, as I recall, I waited 6 weeks (without any treatment) for something to happen. Never did. LOL, the IVIG I had many weeks before Rituxan seemed to have a bigger affect than Rituxan did.

IVIG works for three weeks, and I've done a two-day and a one-day infusion. IVIG is hard on my body, headaches, deep fatigue, and nausea, though I'm getting some relief at infusion time now.

Right. But be aware that the rate of infusion is important in the area of side effects. One way they administer it is over 5 days, which is the way I had it. Time consuming for sure, but had no significant side effects until a day or two after last infusion. Got a mild headache for two and half days straight. Chased it with Tylenol, which helped a bit for a couple hours at a time. A few days later I found out my count was over 300 and thus the 2.5 day headache was likely because of micro clots. I've learned now. Won't keeping trying Tylenol when it isn't working. I now know that low dose / baby Aspirin is my friend.

My hair loss may be from the physical stress of treatments. Dermatologist appointment in three weeks. I just started acupuncture, and I feel really great about that since my energy is returning, and hopefully soon my hair too!

I guess I have read about hair loss from Lupus skin/scalp issues, but don't really know anything about it.

Let us know how it goes. Might think about trying a low dose of Promacta while waiting on Rituxan. My counts are close to 50 with the lowest pill dose, which is 12.5 mg. One can always taper away Promacta if counts begin to rise. Note that it takes some time to get Promacta approved by Insurance.

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Hair Loss with ITP or Treatments 2 years 3 months ago #69632

  • CindyL
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A couple of things to remember, none of us are doctors and everyone is different.
When I did my Rituxan, I had a response right from the get-go. My counts started going up with the first dose.
As for IVIG, I really didn't have any issues with it until after my splenectomy, then all hell broke loose and it did a number of my body. Headaches and really sick to my stomach for a couple of days after.
Never had any issues with hair loss with any of my treatments.
The following user(s) said Thank You: sonyalea

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Hair Loss with ITP or Treatments 2 years 3 months ago #69635

  • sonyalea
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True. I knew this going in, but not that it would have the power of a migraine, which Tylenol didn't have a hope of touching.
Sonya

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Hair Loss with ITP or Treatments 2 years 3 months ago #69636

  • sonyalea
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I'm sorry you had to suffer like that. Hope you're better soon.
Sonya

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Hair Loss with ITP or Treatments 2 years 3 months ago #69637

  • sonyalea
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This is really helpful information for where I'm at right now (still low platelets, waiting on Rituxin to work...) How can you tell if you're having micro-clots other than the headaches? Thanks for your time!
Sonya

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