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TOPIC: A type of ITP which induces skin Dermatitis?

A type of ITP which induces skin Dermatitis? 2 years 5 months ago #57697

  • Hal9000
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Rituxan update.
treatment 1, week 0, no lab
treatment 2, week 1, 37 (some delayed benefit from last months IVIG?)
treatment 3, week 2, 11
Last treatment is Friday.

Now that I've had this treatment, I'm wondering if one's counts rise for a day or two or three after each Rituxan treatment. The treatment destroys the the current mature B cells. With no B cells there are no new antibodies. And with no antibodies no destruction of platelets / TPO.

Gluten free for 26 days. Except for a 3 day flair (from sugar?), hairline dermatitis (herpetiformis?) is all but disappeared. Yeah, happy days with that problem.

A note about the itching issue. It now appears this problem is from my Gluten sensitivity (celiac disease?). In one Celiac disease type, IgA is deposited on the skin and causes itching. Strangely or not, platelet destruction seems to modify the itching intensity. Have no idea how.

Somehow the IVIG treatment reduced overall itching level by about half. Then the (first) Rituxan treatment reduced it to perhaps 10% of original. As treatments continue and the number of days I've been without gluten increases, the itching has steadily decreased. It is now all but gone. Yeah, happy days with that problem.

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A type of ITP which induces skin Dermatitis? 2 years 5 months ago #57738

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Sounds like progress Hal. Staying away from gluten that long takes discipline and certainly helps your inflammation. Do you feel differently within your self on the drugs? Or are they less noticeable then the steroids?
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A type of ITP which induces skin Dermatitis? 2 years 5 months ago #57742

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Hay wquine. Hope things are going well for you.

I did well with initial Rituxan reaction on first treatment. Hardly noticed anything. Apparently the mouse protein debris in the drug was only a small hiccup for my immune system - which was reinforced with vitamin D that day. If you read up on it you should find that the risks of problems weeks or months after treatment can be scary. The odds of something like that are low though.

As I'm finding out now, a real effect is just getting sleepy/tired. Seems as though taking out all those B immune system cells makes one want to sleep a lot.

As I recall you had several Dex treatments. The one pulse that I had didn't seem to make me feeling miserable as it does others. Perhaps if I had more pulses I would be more weary of it. If I were to order drug effects on me, IVIG would be least, then Rituxan, then Dex.

As you may know it can take weeks before Rituxan starts to work. So I've got plenty of time to get a plan on what to do next, LOL

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A type of ITP which induces skin Dermatitis? 2 years 4 months ago #57881

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Rituxan update 2
treatment 1, week 0, no lab
treatment 2, week 1, 37 (benefit from last months IVIG or going gluten free?)
treatment 3, week 2, 18 (was 11**, end of bad cold)
treatment 4, week 3, 36
. . . . . . . . . . . . week 4, 32
**Between sodium citrate and EDTA test counts , nurse prefers sodium citrate number, I prefer highest of the two

Still gluten free. It is hard to tell if my apparent new baseline of 30-something is a IVIG long term side effect or going gluten free. Or, a little of both. Just being above 30, there is no complaint from me.

Blah, so far flat line in response to Rituxan. Doc retesting in 2 weeks and 4 weeks. If a crash occurs, considering: IVIG, Danazol, NPlate, or Promacta. Mentioned Dapsone to doc. Didn't sound like she had ever treated anyone with that.

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A type of ITP which induces skin Dermatitis? 2 years 4 months ago #57883

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Hal
From www.ncbi.nlm.nih.gov/pmc/articles/PMC2040174/

patterns of response to rituximab have been proposed: early (before the fourth dose of rituximab), intermediate (7 to 11 weeks after rituximab), and delayed (>13 weeks after rituximab) [8]. In our study, the probability to achieve a platelet count >50 × 109/l occurred at a median of 5 months, so we speculate that the complete inhibition of antibody formation and restoration of platelet counts with rituximab may occur after at least 5 months (95%CI = 0.5 to 11.6 months) from the first dose of the antibody (Fig. 2). However, some patients may achieve a quite delayed response (as long as 1 year after therapy), a situation in which it is important to wait a reasonable time period before another treatment is planned.
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A type of ITP which induces skin Dermatitis? 2 years 4 months ago #57886

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Gosh Anne, thought I had read somewhere that it could take a year to respond to Rituxan. That study must have been it. Thanks.

The response categories of 'early', 'intermediate', and 'delayed' I totally missed. Skimmed right over it. Somehow seems way more important now, LOL.

Check me here. With at least a 7 week intermediate response time, that will put me out to (7-4=) 3 weeks from now for my next hopeful increase in counts? Yea, guess I can relax for now.

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A type of ITP which induces skin Dermatitis? 2 years 3 months ago #58167

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Rituxan update 3
treatment 1, week 0, no lab
week 1, 37 (benefit from last months IVIG or going gluten free?)
week 2, 18 (end of bad cold)
week 3, 36
week 4, 32
week 6, 21
week 8, 30
Kind of looks like a continuing and declining IVIG response from November. No apparent Rituxan effect. In a related note, background itching has returned. Around week 6 it was pretty intense but has moderated since. I wonder if there was a immune war going on around week 6, and ITP won the battle.

I've been looking for a skin / dendritic cell and IVIG response connection and came up with these.
"Dendritic cells modulate platelet activity in IVIg-mediated amelioration of ITP in mice"
www.bloodjournal.org/content/116/23/5002
"Tolerogenic dendritic cells as a target for the therapy of immune thrombocytopenia"
www.ncbi.nlm.nih.gov/pubmed/22387587

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A type of ITP which induces skin Dermatitis? 2 years 3 months ago #58174

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Hal- I had a partial response to Rituxin back in 2009. I wonder if you are also having a partial response?
I did the 4 weekly doses. Counts stayed around 25K for 6 months. It was high enough to allow me to taper off of prednisone , which I hadn't been able to do before then. So I was happy with that. I don't have much bruising even at low counts and never had a bleeding problem, so I can live with 25K.

But after 6months Rituxin must have worn off because my counts dropped to less than 5K. I wanted to do Rituxin again but my hemo wouldn't agree to it. He said the response wasn't enough to justify the risk. I got a second opinion. The second hemo agreed that I shouldn't do Rituxin again, and suggested I move on to Promacta. Promacta was a newish drug at the time, and GlaxoSmith was giving it away free to people who didn't have health insurance. I fit their criteria so it all worked out rather well. I was on 50mg with counts around 50K, then counts slowly went higher so dose was reduced to 25mg. good luck!
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A type of ITP which induces skin Dermatitis? 2 years 3 months ago #58192

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Oh my posey, 25mg of Promacta is great. Do you have Asian descent? I have two concerns with TPO agonist, worsening itching and the possibility of loss of response. One super major benefit is that it buys time for science to figure out a better treatment for ITP.

I see the logic in your travail. Like you, if I end up with a 30'ish count that is very enticing - no treatments! Not sure how strong your IVIG response was but I really want to take advantage of my good IVIG response as it seems to provide the most benefit. As with the agonist, loss of response to IVIG is a big concern too. Synergistic treatment benefits are on my side right now. Still under the umbrella of a possible Rituxan co-benefit if treatments are restarted as soon as possible. So with that I am thinking about combination treatments. Specifically treatments with IVIG and something else, like Dex or Danazol or MMF or Dapsone. May have problems with Hema though ??? This is perhaps unorthodox methodology and problematic if counts stay above 30.

What was your thinking when you decided to hang loose with the 25'ish counts? Concerned with treatment risk, or ? How was IVIG response ?

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A type of ITP which induces skin Dermatitis? 2 years 3 months ago #58194

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Hal- In answer to your questions-- I have never had IVig !(wow right?) haha I am of Scotch/Irish decent and live in the north of San Francisco area. I have had 3 hematologists since my ITP journey began 7 years ago. They have all agreed on two things- that I don't need a bone marrow biopsy and that IVig is not a good everyday treatment since the response does not last. But as a rescue treatment my current guy is okay with it- rescue meaning like emergency surgery. He would not go for it just to get the numbers up. I have been as low as 1K, 2 and 3K and I just take some prednisone. As you have said, YES! great to have a rescue treatment!! I really have never had bruising or bleeding with low counts. In fact, when I do have bruises my counts are usually in the teens or twenties. When my counts go way low- less than 10, I have never had any symptoms. I really think something kicks in around 8K that keeps me from bruising and bleeding- microplatelets? large platelets, activated platelets? are all theories.

That said, I have been hearing more about combining treatments. And I think you are onto something with your thoughts about combining IVig with Rituxan. I do see the value in the booster effect. There is the problem with not knowing what is working but eventually that is sorted out.
Yes, I am very concerned about toxicity and side effects and over-treatment. Some people are going for remission- I am not. I am looking for the lowest dose with the least amount of side effects to maintain a safe count. I am on Nplate now with counts around 50K.
Sometimes 25mg of Promacta has worked for me and sometimes it does nothing. (?) Promacta gives me some cognitive side effects- foggy detached thinking. That effect goes away but I still feel weird on Promacta. Nplate has almost nothing in the way of side effects- thinking is clear, I feel good on it. But yes, it has lost some effectiveness. I take 400-450mcg now, I used to take 350mcg. hey thanks for all your contribution to the forum! good luck
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A type of ITP which induces skin Dermatitis? 2 years 3 months ago #58360

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Posey, no IVIG? Ok, Wow!, LOL. Now if you are in the 2% that go into remission by it, what then?

About partial responses. I can't help but think that sort of response could mean not one but two types of platelet destruction mechansims going on at the same time. Reference antibody types. Eliminating one destruction type, counts go up a non trivial amount - a partial response. Eliminating both/all destruction types, counts return to normal. The count gain from a partial Rituxan response and then loss 6 months later is evidence of more than one destruction mechanism.

Armed with that possibility, one can see that many folks likely require some sort of combination treatment to ever go into remission. For me, IVIG (or was it Rituxan?) seems to have temporarily repaired one platelet destruction type. But now it is a pure guess how to treat the other platelet destruction type. Steroids alone worked miserably for me. But now that I seem to have a partial response, a Dex pulse could be exactly what I need. I dunno.

Then there are others that gain, or loose, response to one/both of the TPO agonist. That also seems to be evidence for two platelet destruction types going on in those folks.

Now if we just had 'tailored treatment therapies' ! We could take a test and immediately know which combination treatments were most appropriate. With a partial Rituxan response history, perhaps we are simpatico and share the same flavor of ITP.

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A type of ITP which induces skin Dermatitis? 2 years 2 months ago #58535

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Rituxan update 4
treatment 1, week 0, no lab
week 1, 37 (benefit from last months IVIG or going gluten free?)
week 2, 18 (end of bad cold)
week 3, 36
week 4, 32
week 6, 21
week 8, 30
week 10, 30
week 12, 16 **
Well, time to move on from Rituxan. Starting 600mg Danazol next week - wasn't in stock to start today. Had to order it. Apparently not a popular drug, LOL. If Danazol isn't working well then combining with Promacta is on the table. Reference 'zomzombie' excellent results when the two are combined.
pdsa.org/discussion-group/7-treatment-general/27991-danazol-dancristine-any-experiences.html#40342

** Possible (week) link established between counts and hairline dermatitis (celiac) flairs. The 16 count was preceded by several days of flair. Could have gotten some Gluten from somewhere. If this link is established then the rise to 30 is not likely to be the result of Rituxan or an extended IVIG response. The rise to 30 would be because of gluten elimination from diet.

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A type of ITP which induces skin Dermatitis? 2 years 2 months ago #58539

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No chance at giving a diet a chance Hal? Seemed like you were above 10 to start this whole ordeal. Hate to see you just smacking your body with all these drugs.

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A type of ITP which induces skin Dermatitis? 2 years 2 months ago #58543

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wquine, thanks for the consideration. Guess I'm trying to fight the war on ITP on all fronts.

The diet that helps me is no gluten and avoidance of fructose/sugar - which I've been on since mid December. As I understand, with celiac disease it can take 6 months for a meaningful diet response. Information on the subject is very sparse. Perhaps two years for my hairline dermatitis to go away completely. LOL, I'm getting there, slowly...

Last I recall, you were getting much better counts after just a month on auto immune diet. Hope your ITP war is going better than mine :)

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A type of ITP which induces skin Dermatitis? 2 years 2 months ago #58599

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Still waiting on Danazol prescription. Received a letter today from insurance co stating coverage for Danazol is *not* approved. Blah. Apparently treatment for ITP is the problem. With talking with hema's office, I think they have appealed the decision - not sure. LOL, if the insurance co is made to realize that Danazol is much, much cheaper than Promacta/NPlate, I'm sure it will be approved quickly.

Reference earlier reported Rituxan week 12 count of 16. That turned out to be in the middle of an 8 day flare, followed by two days of almost zero itching. No itching was a first since IVIG treatments. So with that, I'm reevaluating what happened. I think my immune system had another ITP battle - like what occurred at week 6. This time I'm wondering if my immune system may have won a minor victory. Itching intensity has reduced since then. LOL, with this possibility, makes me want to tell bad jokes on PDSA.

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A type of ITP which induces skin Dermatitis? 2 years 1 month ago #59084

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Record update, Promacta week 0. Hema has appealed Danazol insurance disapproval twice. Now taking the issue before 'Independent Review Organization' for 3rd party arbitration.

Started on 50 mg Promacta in the interim. After 4.5 days count was 75. LOL, accidentally discovered I have no bruising at that level. Sweeet! I calculate a 75 extrapolates to a 150 count for next week's test. Dr talked of reducing dose level to 25 mg. Test showed no liver problems.

Side effects. After a couple of days felt like on verge of coming down with flu - with headache. One Tylenol and one fish oil capsule relieved symptoms. Flu feeling declined but headaches want to return. The notion of platelet granules/fragments? with my chronic ITP is a worry for unwanted clotting. Whenever the slightest feeling of headache comes back, I take another fish oil capsule. Feeling goes away. Strategy seems to be working.

Got to thinking about this headache that wants to come back. Normally when I get a headache it is at the front of my head - a temporal pain. This Promacta induced headache is at the back and seems to run down to the neck. Recall that the lower back part of the brain processes visual information. I then remembered back to the 2.5 day long headache I got after taking IVIG. It was not a temporal pain. It was all the way to the back - just like the Promacta induced headache. Hmmm.

So I have to think, in my case at least, that both IVIG and Promacta headaches are because of Platelet particles/granules running loose in my blood stream. I took a look at the Mean Platelet Volume (MPV) in the recent blood test. It was pretty high (and out of normal range). Not sure if it was a record high for me but it was high. I recall that MPV went into the normal range with IVIG treatment. Blah, I can only hope that the MPV value will fall into normal range soon and the headache propensity will go away. Do others have experiences to relate / expand on?

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A type of ITP which induces skin Dermatitis? 2 years 1 month ago #59092

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Good that you are responding so quickly to Promacta, Hal! That is a great response! If you are worried about clots then you might really try to keep the platelet counts around 50K. Also, of course, a lower dose usually equals fewer side effects. Drew Provan, an ITP expert in the UK said somewhere (sorry don't have the quote) that he likes his patient's numbers between 35-50K when on TPOs.

Like you, I got fluish feelings the first few days on Promacta. Also had some headachiness but it went away after the first week. I have been on Promacta four times- side effects are always different. Its a very quirky drug for me.

I get Nplate headaches. They happen upon waking in the morning usually one day per week. The pain is across my forehead. They are vascular headaches I am certain because they respond so well to coffee. If I wake with an Nplate headache, I drink some coffee (with milk) small half cup and the headache quickly goes away. Good luck! Hope you feel better soon!

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A type of ITP which induces skin Dermatitis? 2 years 1 month ago #59096

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Posey with such similar Promacta symptoms have to wonder if our distant ancestors are common.
Yea, absolutely. It is likely dosing down with some long term analysis is required. At the same time, I'm willing to let my hema control it - as long it isn't a stupid move. I'll probably end up explaining it to her like this. Before starting Promacta my counts ranged from roughly 30 to 15. That is a 2 to 1 ratio. Therefore, *ideally* I want to adjust the Promacta dose to produce counts confined to the range of 50 to 100. Same 2 to 1 ratio. As we both know, making that happen can be problematic. Also, flu should be allowed to push counts below 50. Dr. Provan's 35 to 50 range doesn't sound realistic to my case. I could see that someone that normally needed a 75 mg dose might stay in that low and tight of a range.

LOL, then (still to be discussed with hema) will taper to half of that (ideal) Promacta dose while starting Danazol. Then jigger Danazol dose for the same 50 to 100 count range. Give it a few months and see what happens.

You know, I stopped drinking coffee on ITP diagnosis. For all I know both IVIG and Promacta headaches are cured by coffee. Do you recall if Promacta headaches were helped with coffee? Do you drink regular or decaff?

What is the starting dose of NPlate? Is it a "3" mcg/kg or ? Is the starting dose for NPlate considered the same as 50 mg of Promacta?

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A type of ITP which induces skin Dermatitis? 2 years 1 month ago #59100

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It's good to hear that you are having such good counts on Promacta lately Hal. I will just chime in that, like poseymint, I had some nausea/headaches/flu-like feelings when I first started the medication. It was all relatively mild and only lasted for about the first month or so of taking the medication. Hopefully your initial symptoms will ease as you take it longer.

Out of curiosity (you may have discussed this elsewhere and I missed it), why do you want to try Danazol if Promacta is working so well for you? I saw that you were having trouble getting approval for use of Danazol, but just curious about your motivations for combining or switching if you have a single drug that already works.

Good luck, and with counts going so quickly up to 70, maybe you can titrate down to a lower dose with continued response!

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A type of ITP which induces skin Dermatitis? 2 years 1 month ago #59113

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Thanks mom. The flu like symptoms only lasted 2-3 of days and the slight headache feeling has now gone away - some 9 days since start. But the platelet count, WOW, it's like the world is back to normal.

I've been reading old PDSA posts. A LOT OF PDSA POSTS. Trying to find those that seem to match my condition, and also, trying to cast stories that I read into one of the four known types of ITP . For those that have a poor steroid and strong IVIG response, Danazol has worked well. As I recall, you have strong steroid response but have never had IVIG. Without the IVIG good/bad response, I am at a complete loss to even speculate on what prospects either Danazol or Rituxan could be for you (or Anne). Blah.

Still, want to help even if only slightly. Might want to read through ' angel ' posts. She has a good steroid response, like you, and was taking Pred, Danazol, and Revolade all at the same time. That's a lot of drugs, LOL. She reports 200 mg per day of Danazol. Might try to email her. See what has happened. Maybe ask her opinion on trying 100 or 200 mg a day to see if it gives some count benefit.

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A type of ITP which induces skin Dermatitis? 2 years 4 weeks ago #59114

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Not sure if my headachiness from Promacta was cured by coffee. I may not have tried coffee. It was more of an all over unwell kind of feeling. I think it lasted a few days, and like you was completely gone in a week. I drink regular coffee for my Nplate headache- caffeine is the magic elixir. I drink a shot of strong coffee in milk, my version of a cafe latte from Starbucks.

The starting dose for Nplate is 1mcg per kg of body weight. Nplate is all dependent on how much you weigh. Promacta is whatever- 50 for everyone. I don't know if 50 Promacta correlates to 1mcg Nplate, probably not really. Maybe 25mg Promacta would be like 1-2mcg Nplate(?) With Nplate the dose goes from 1mcg to 10mcg. I find the two drugs very different. I've heard people on the forum say their doctors have told them the two drugs are the same- one a pill, the other an injection. Don't believe it.

Some peoples counts go down when they are sick. My counts shot up to 325K when I got bronchitis earlier this year. Up for just one week- 53K, 325, then back down to 53. My hemo explained why, but I couldn't follow him- it was something about cytokines.
Again, so good you are responding and are feeling better!

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A type of ITP which induces skin Dermatitis? 2 years 4 weeks ago #59117

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Hal9000 wrote: Thanks mom. The flu like symptoms only lasted 2-3 of days and the slight headache feeling has now gone away - some 9 days since start. But the platelet count, WOW, it's like the world is back to normal.

I've been reading old PDSA posts. A LOT OF PDSA POSTS. Trying to find those that seem to match my condition, and also, trying to cast stories that I read into one of the four known types of ITP . For those that have a poor steroid and strong IVIG response, Danazol has worked well. As I recall, you have strong steroid response but have never had IVIG. Without the IVIG good/bad response, I am at a complete loss to even speculate on what prospects either Danazol or Rituxan could be for you (or Anne). Blah.

Still, want to help even if only slightly. Might want to read through ' angel ' posts. She has a good steroid response, like you, and was taking Pred, Danazol, and Revolade all at the same time. That's a lot of drugs, LOL. She reports 200 mg per day of Danazol. Might try to email her. See what has happened. Maybe ask her opinion on trying 100 or 200 mg a day to see if it gives some count benefit.


Lol, no worries Hal. I was definitely not shopping around for Danazol for myself! I've already expressed my reluctance to go for that as a woman (masculinizing effects, no thanks, I'm good). I was just wondering why you were looking at it for yourself if Promacta is working. It sounds like you are keen to test your theories on yourself, more power to you :)

And I actually did have IVIg when I was a child. They tried it before giving me the splenectomy, and I did have a response. I recall the counts rising up into the 300k 200k ranges. Of course, they quickly tanked back down towards 10k after the effects wore off. I feel like I was given maybe 3 different tries with IVIg. It was EXTREMELY expensive at the time, so they didn't have any plans to do periodic infusions over any extended amount of time.

Anyway, you can add that information to your little type database if you want :) Glad to hear you are doing so well and I hope it continues!

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A type of ITP which induces skin Dermatitis? 2 years 3 weeks ago #59133

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Ooops, guess I missed your question mom. You were asking why try something else if Promacta is working.
I guess the short answer is that I am not that comforted in the current situation, and, doing something now before the Rituxan has completely worn off, makes now the best time to look. I wonder that I have two kinds/antibodies/types of ITP and the reason I had an increase in counts (12 to roughly 25) post Rituxan is because one antibody is (likely temporarily) in remission. Rituxan partial remissions are notoriously short lived, just ask Posey.

If you are not aware, there are reports in these forums of those that have lost response, over time, to Promacta. The reports are few but they do exist. In my notes I have 'server' and 'chasty' as examples.

So if one looses response to Promacta what does one do? Well, I respond to IVIG. But there are lots and lots of reports of those that loose response to IVIG. I don't respond to steroids, so that's no help. NPlate might well work. But, loss of response can occur there over time too. From my ITP type studies, I should not respond to Immuron or Cyclosporine. The list of alternatives is short ! It's either NPlate or some extreme combination therapy that likely includes the dreaded Cyclophosphamide.

On the other hand, my studies suggest Danazol would not only raise counts but should put me in remission. IMHO, it would be very, very, very, very foolish not to try it, and right now before Rituxan treatment wears off completely. The safest state is the state of 'remission', LOL

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A type of ITP which induces skin Dermatitis? 2 years 3 weeks ago #59158

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Promacta update 1 (11.5 days). Last week's count was 75 with 50mg. The projected count for this week was 150. Well, got a little faster increase this time. Counts is now 193. Yeah, yeah...
www.youtube.com/watch?v=J2HBdRCroks B)

Prescription going down to 25 mg, taken as 50 mg every other day, until refill. At this point I'm going by 'Vdeutsch85' as my representative poster child for Promacta response for those with TPO antibodies (type 3). Her response was:
12.5 mg gives count of 40-125
25 mg . .gives count of 130-380
That's an awfully good response. I'm probably not going to be that good. So my forecast for next week is a drift down to 150.

Happy weekend everybody !

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A type of ITP which induces skin Dermatitis? 2 years 2 weeks ago #59290

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Promacta update 2 (18.5 days). After 7 days at 25mg (50mg alternate days) count is 167. A little higher than the 150 I was hoping for.

Now going to 50mg every third day for an average dose of 16.6mg. Recheck in two weeks. Mean Platelet Volume continues to be high. Just out of normal range which is typical without any treatment.

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A type of ITP which induces skin Dermatitis? 2 years 2 weeks ago #59297

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I'm glad you're going down on that dose. Counts are too high! You respond great to Promacta!

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A type of ITP which induces skin Dermatitis? 2 years 2 weeks ago #59308

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Yea, it's kinda hard to tell yet if lowering to 12.5 mg will be required to get the count under 100. Taking lots of fish oil capsules.

Love that Promacta!

LOL, I'm ready for 12.5 mg every other day and starting Danazol, pronto.

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A type of ITP which induces skin Dermatitis? 2 years 2 weeks ago #59312

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Why start Danazol if Promacta is working?

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A type of ITP which induces skin Dermatitis? 2 years 2 weeks ago #59316

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That Promacta is some fantastic stuff, heh?

Mom asked the same question. Why try something else if Promacta is working?
From my earlier reply , I guess it is about minimizing risk of ITP worsening by trying to leverage what is left of any Rituxan response now. No treatment (possible Danazol remission) is better than continuous treatment (Promacta).

One thing I left out from my earlier. I have not found anyone with my ITP response/type (TPO antibodies) on the PDSA forum that has ever gone into remission with TPO agonist (Promacta/NPlate) treatment.

Steroid responder's have lots of things to fall back on when one drug treatment fails. Steroids, Rituxan, Azathioprine, & Cyclosporine to name a few.

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A type of ITP which induces skin Dermatitis? 2 years 2 weeks ago #59322

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I suppose women have a different attitude to Danazol than men.
I've posted links to medicines.org.uk before but people in The USA don't seem able to access them, so have copied relevant (male) side effects info for you Hal incase you've not managed to access them. Not that I'm saying you will get any of them but always good to be aware.

4.4 Special warnings and precautions for use
In view of its pharmacology, known interactions and side effects, particular care should be observed when using danazol in patients with hepatic or renal disease, hypertension or other cardiovascular disease and in any state which may be exacerbated by fluid retention as well as in diabetes mellitus, polycythaemia, epilepsy, lipoprotein disorder, in those with a history of thrombosis, and in those who have shown marked or persistent androgenic reaction to previous gonadal steroid therapy. Adjustment in concomitant therapy may be called for particularly in patients with hypertension, diabetes mellitus or epilepsy when introducing or discontinuing danazol as well as during Danazol treatment.
Caution is advised in patients with migraine.
Until more is known, caution is advised in the use of danazol in the presence of known or suspected malignant disease (see also contraindications). Before treatment initiation, the presence of hormone-dependent carcinoma should be excluded at least by careful clinical examination, as well as if breast nodules persist or enlarge during danazol treatment. In the event of virilisation, Danazol should be withdrawn. Whilst androgenic reactions will generally prove reversible, continued use of danazol in the face of evident virilisation is likely to cause irreversible androgenic effects.
Danazol should be stopped if any clinically significant adverse event arises, and particularly if there is evidence of papilloedema, headache, visual disturbances or other signs or symptoms of raised intracranial pressure, jaundice or other indication of significant hepatic disturbance, thrombosis or thromboembolism.
In addition to clinical monitoring in all patients, appropriate laboratory monitoring should be considered which may include periodic measurement of hepatic function and haematological state. For long-term treatment (> 6 months) or repeated courses of treatment, biannual hepatic ultrasonography is recommended.

The lowest effective dose of danazol should always be sought.

Experience of long term therapy with danazol is limited. Whilst a course of therapy may need to be repeated, care should be observed as no safety data are available in relation to repeated courses of treatment over time. The long-term risk of 17-alkylated steroids (including benign hepatic adenomata, hepatocellular focal nodular hyperplasia, peliosis hepatis and hepatic carcinoma), should be considered when danazol, which is chemically related to these compounds, is used for periods longer than those normally recommended.

Danazol capsules contain lactose. Patients with rare hereditary problems of galactose intolerance, the Lapp lactase deficiency or glucose-galactose malabsorption should not take this medicine.
4.5 Interaction with other medicinal products and other forms of interaction
Anti-Convulsant Therapy: danazol may affect the plasma level of carbamazepine and, possibly the patient's response to this agent and to phenytoin. With phenobarbital it is likely that similar interaction would occur.
Anti-Diabetic Therapy: danazol can cause insulin resistance.
Oral Anti-Coagulant Therapy: danazol can potentiate the action of warfarin.
Anti-Hypertensive Therapy: Possibly through promotion of fluid retention, danazol can oppose the action of anti-hypertensive agents.
Ciclosporin and tacrolimus: danazol can increase the plasma level of ciclosporin and tacrolimus, leading to an increase of the renal toxicity of these drugs.
Concomitant Steroids: Although specific instances have not been described, it is likely that interactions will occur between danazol and gonadal steroid therapy.
Migraine Therapy: danazol may itself provoke migraine and possibly reduce the effectiveness of medication to prevent that condition.
Ethyl Alcohol: Subjective intolerance in the form of nausea and shortness of breath has been reported.
Alpha Calcidol: danazol may increase the calcaemic response in primary hypoparathyroidism necessitating a reduction in dosage of this agent.
Interactions with laboratory function tests: danazol treatment may interfere with laboratory determination of testosterone or plasma proteins (see section 4.8).
Statins: The risk of myopathy and rhabdomyolysis is increased by concomitant administration of danazol with statins metabolised by CYP3A 4 such as simvastatin, atorvastatin and lovastatin.

4.8 Undesirable effects
The possible causal relationship between danazol and many of the following events reportedly associated with its use remains to be defined.
Blood and lymphatic system disorders
Increase in red cell and platelet count. Reversible erythrocytosis or polycythaemia may be provoked. Eosinophilia, leucopenia, splenic peliosis and thrombocytopenia have also been noted.
Endocrine disorders
Androgenic effects:
Acne, weight gain, increased appetite, seborrhoea, hirsutism, hair loss, voice change, which may take the form of hoarseness, sore throat or of instability or deepening of pitch. fluid retention.
Other endocrine effects:
Modest reduction in spermatogenesis.
Metabolism and nutrition disorders
Insulin resistance may be increased in diabetes mellitus but symptomatic hypoglycaemia in non-diabetic patients has also been reported as an increase in plasma glucagon level, mild impairment of glucose tolerance.
A temporary alteration of lipoproteins in the form of an increase in LDL cholesterol, a decrease in HDL cholesterol, affecting all subfractions, and a decrease in apolipoproteins A1 and AII, is likely with danazol in the female. The clinical significance of these changes is not established.
Induction of aminolevulinic acid (ALA) synthetase, and reduction in thyroid binding globulin, T4, with increased uptake of T3 but without disturbance of thyroid stimulating hormone or free thyroxin index, is also likely during therapy.
Psychiatric disorders
Emotional lability, anxiety, depressed mood, nervousness and changes in libido.
Nervous system disorders
Dizziness, headache, vertigo, benign intracranial hypertension.
Danazol may aggravate epilepsy and expose the condition in those so predisposed.
Fluid retention may explain the occasional reports of carpal tunnel syndrome. Danazol may also provoke migraine.
Eye disorders
Visual disturbances which may take the form of blurring or difficulty in focusing and in wearing contact lenses or need for temporary alteration in refractive correction have been noted.
Cardiac disorders
Hypertension, palpitation and tachycardia.
Thrombotic events including sagittal sinus, cerebrovascular thrombosis as well as arterial thrombosis. Myocardial infarction.
Vascular disorders
Flushing, exacerbation of hypertension
Respiratory, thoracic and mediastinal disorders
Pleuritic pain, interstitial pneumonitis
Gastrointestinal disorders
Nausea, epigastric pain
Hepatobiliary disorders
Modest increase in serum transaminase levels and rarely cholestatic jaundice, benign hepatic adenomata and pancreatitis. Peliosis hepatis as well as malignant hepatic tumour have been observed with long term use.
Hepatocellular injury, hepatic failure, jaundice hepatocellular, hepatocellular focal nodular hyperplasia.
Skin and subcutaneous tissue disorders
Rashes, which may be maculopapular, petechial, or purpuric or may take an urticarial form and may be accompanied by facial oedema. Associated fever has also been reported. Rarely, sun-sensitive rash has been noted. Inflammatory erythematous nodules, changes in skin pigmentation, exfoliative dermatitis and erythema multiforme have also been reported.
Musculoskeletal and connective tissue disorders
Backache and muscle cramps which can be severe. Creatine phosphokinase levels may also rise. Muscle tremors, fasciculation, limb pain, joint pain and joint swelling have also been reported.
Renal and urinary disorders
Haematuria has rarely been reported with prolonged use in patients with hereditary angioedema.
General disorders and administration site conditions
Fatigue

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