Danazol, low dose Promacta with a twist of slow remission

You make a strong point about TPO sseiler. It would be reasonable to expect lower circulating TPO levels with row 3. If you have normal levels perhaps that is enough to rule row 3 out entirely.

Ok. If one assumes your WinRho response is from row 1, that leaves two combinations left. Row 1 & 2a and row 1 & 4. The really nice thing about row 2 is that it responds well to Promacta or Nplate. It seems like a very safe thing to do would be to take Promacta for awhile (a year?) and see if one can get at least a partial remission from it. Usually one needs progressively less dose over time if that happens. What do you think? Note that user 'EmilyK' achieved a partial remission with Promacta but with an apparent 2b (strong steroid) response.

As far as testing for antibodies, that seems to be available to medical research only at this point. See this post by Rob16. Maybe those tests are available to you some way, I don't know.

Sometimes you have to take into account that antibodies can come and go which changes treatment responses. I see that a lot with Lupus antibodies which are tested fairly often, unlike ITP antibodies. A person might fit into a 'row' at one point but they don't necessarily stay there.

Sandi, DeJaVu on antibodies when remission occurs:
pdsa.org/discussion-group/6-general-itp-discussion/29749-itp-types-and-treatments-by-hal.html#60120
As I understand it, when remission occurs antibodies don't go away, they just get regulated. It would be reasonable to expect that a antibody under regulation may not cause enough circulating antibodies to be measured in a lab test.
How different rows might divide in dominance, or change over time, is a Mystery To Me.

That's the thing, they might change over time. I've never seen any studies where antibodies were measured on a continual basis. I've only seen it with my own Lupus labs; the ANA and dsDNA, etc go up and down and sometimes are even normal, or new antibodies develop, but that does not correlate with the severity of the symptoms. It's a little more straight-forward with anti-platelet antibodies since it only affects the platelets and not multiple organs and tissues. It would be interesting to follow some ITP patients and their antibodies over a period of time to see how it all correlates.

Yes, I agree that the production of antibodies remains mysterious. Dr. Howard Liebman (USC hematologist I saw for a second opinion) believes lab testing for ITP antibodies is unreliable. Here is what I know from what little I remember from an immunology class I took as an undergrad plus what little I've researched regarding ITP. T regs are T cells that tell B cells to produce antibodies to perceived foreign entities in the body. So if you have T regs that are not functioning properly in recognition of foreign vs. non-, they're incorrectly activating B cells. I'm sure the activation and response to activation signals vary a great deal. For example, when I'm sick and my immune system is primed for action, so to speak, my counts reliably go down. Anyway, I think the idea behind the mycophenolate is to reduce the T cell and B cell numbers (very scary to me). The mycophenolate interferes with necessary enzyme pathways needed for production of these cells and other cells in the body. The other cells in the body apparently have other pathways so they can replicate even with the mycophenolate. The T and B cells do not have the alternative pathways. Going down a whole other wormhole, you guys may find this interesting: worldwide, studies seem to show that people who develop cancer tend not to develop Alzheimer's and vice versa. There is a theory that Alzheimer's may truly be an autoimmune disease with neurological pruning functions somehow heightened, so overactive immune system would tend to obliterate cancer cells. I wonder if people with various autoimmune diseases also have a decreased risk of cancer. I start the mycophenolate next week and I'm dreading it. Three months trial then Dr. Liebman will somehow test for response then decide if I go another six months for nine months total. Blah. Hate this disease.

I've been on mycophenolate for Lupus and I was constantly sick and unable to kick it. It would take me three months to get over bronchitis or a sinus infection. Immunosuppressants like that raise the risk of cancer which is the main reason I don't like them. I think I've done enough damage to my immune system with all of those drugs and wish I'd never used them. I've done Rituxan, Mycophenolate, Imuran, steroids and Methotrexate and have decided that I'm done with that stuff. None of them did any good and only caused more problems. I can see why you are dreading it.

Back when I was diagnosed (1998), it was said that antibody testing was unreliable. I guess nothing has changed much. They've identified more antibodies and know more about them, but it's still considered to be unreliable.

My count drops at the slightest hint of an infection or periods of sustained stress.
I took Mycophenolate for 4 months. The highest platelet count I achieved was 92 after being titrated to the maximum dose. During which time I had 3 colds followed by an horrific dental abscess & antibiotics, each associated with a drop in platelets. I gave it up as a bad job.

Hi Sandi,
Thanks for your reply. I love hearing everyone's voice of experience. Boy, you've been down a lot of immunosuppressant roads. I don't have a lot of confidence in the mycophenolate, but I think part of that is a reluctance to do it. It may be that I won't tolerate the mycophenolate well and have recurring infections. I will need to be on acyclovir while I'm on mycophenolate since I had chicken pox back in 1995 as an adult (my son gave it to me!) I've researched prophylactic strategies for urinary infections and will do those too. Part of me wants to chuck the mycophenolate. I feel like such a guinea pig. Doctors sometimes seem so flippant about prescribing these drugs. My local hemo dr. chides me when I adjust prednisone dose when I need it as I wait for Winrho treatment which by the way I will not be using again. It seems like they don't really get these are our bodies and everything we do to them is significant and possibly life-altering. I get mad about how casual doctors can be. Okay, so very important question to all PDSA folks out there: has anyone experienced success with mycophenolate and what was your experience like? I'm really feeling like I'm on the fence.... Thank you everyone. I feel so lucky to have you.

Thank you. I appreciate your feedback. I'm now wondering if it's even worth a try..... the USC hemo dr. wants me to do it. The thought of fighting infections for the duration of treatment which is 3 months minimum as a trial and 9 months maximum is horrible. Then there is the risk that not just viruses and bacteria are invading...potential cancer cells are not being attended to. If you're willing to tell me - what do you do for your ITP treatment? Thanks again.

Sseiler:

You're absolutely right about how casually doctors prescribe these medications. My Rheumatologist keeps fighting with me about going back on Imuran. I keep telling her no, been there, done that, but she keeps insisting. I get a pamphlet every time I leave there and she wants me to think about it. The visits are a re-run and I'm tired of being pushed. The last immunosuppressant I used was Methotrexate a few years ago. I developed a nodule on my lung (common side effect) and that was when I said never again. I was voluntarily injecting myself with chemo once a week and seem to have developed IBS from it. It didn't do a darn thing to help. It's my body and I wish I had paid more attention to what I was doing to it long-term.

As for mycophenolate success stories, it hasn't been used much here. Of those who have used it, most of the stories end up like MrsB. It can take a while to kick in and most don't stick with it for too long even when it does work. You can probably do a search on it, but you might find more under CellCept than mycophenolate.

sseiler wrote: ... Okay, so very important question to all PDSA folks out there: has anyone experienced success with mycophenolate and what was your experience like? ...

In my notes I have user 'ashybobashy ' archived remission with CellCept. She had a poor steroid response and a strong IVIG response - thus classified as row 3 in my table. Counts were up to 100 after 6 months on it. Dose: 250mg x 2. AFAIK, there are no other remission besides hers from MMF/CellCept that has been reported on this forum.

So this is Christmas
Cheers to better ITP drugs.

Yes! Merry Christmas to you, Hal9000. I have appreciated all of your responses and information. I wish my body would just get wise and knock off attacking itself. Sigh. I used to drive for the American Cancer Society and sometimes cancer patients would go into mysterious and unexpected remissions, so stranger things have happened. Anyway, Happy New Year!

Hi Sandy,
I can't remember if I replied to your post, so here it is. Thank you so much for your responses to my questions and posts. I appreciate all that you do for the PDSA site and the people who visit it. Have a very Happy New Year!
Sue

sseiler wrote: ... Going down a whole other wormhole, you guys may find this interesting: worldwide, studies seem to show that people who develop cancer tend not to develop Alzheimer's and vice versa. There is a theory that Alzheimer's may truly be an autoimmune disease with neurological pruning functions somehow heightened, so overactive immune system would tend to obliterate cancer cells. I wonder if people with various autoimmune diseases also have a decreased risk of cancer...

My sister is taking 'Aducanumab'. I was reading some information on it and came across the same theory - that ITP, Alzheimer's, and propensity for cancer are likely related. Since I have ITP and she has early onset Alzheimer's it makes sense. If the avg life span wasn't so long now, the relation couldn't be seen / be so obvious.

sseiler wrote: ... I used to drive for the American Cancer Society and sometimes cancer patients would go into mysterious and unexpected remissions, so stranger things have happened...

Let me guess. You have a friend or relative that caused you to enter the medical field and/or get involved with ACS?

Danazol update. Continue to be on 12.5mg Promacta and 50mg Danazol. Only complaint about Danazol is that I've had 3 pimples now, LOL. Count today, after 8 weeks, is 94. Yea! Four weeks ago count was 60. Doc prefers to keep both drugs for now. Need to give Danazol time to get counts into normal range. Retest in 7 weeks.
Read on drugs.com yesterday that bio-availability of Danazol drastically increases when it is taken after meals. Have been taking it before meals. Going to after meals now.

I actually think the average life-span is getting shorter. I can't even tell you how many people I know that have recently died in their 50's. Many middle aged people have chronic diseases; this was rare just a generation ago. Heck, way too many young people have chronic illnesses. I started in my 30's and my daughter was diagnosed with Graves before she turned 20. It's really sad. People are just not healthy any more. This early-onset dementia is new too. Didn't happen years ago.

Yes, I heard some statistic on the news about 2016? being the first year since the AIDS brake out (80s?) that American life expectancy is less than the year before. The cited reason was people over dosing on opiates. My own opinion isn't far from yours Sandi. The way I see it American youth are drastically overweight. Once they get older they, collectively, will be a medical catastrophe - especially in the department of Diabetes.

I watched your earlier youtube link about vitamin C by doctor Humphreys. As I recall she said vitamin C reduces inflammation. Tell me, has she made comments in this or other videos about SLE?

Hal9000 wrote: ...
Danazol update. Continue to be on 12.5mg Promacta and 50mg Danazol. Only complaint about Danazol is that I've had 3 pimples now, LOL. Count today, after 8 weeks, is 94. Yea! Four weeks ago count was 60. Doc prefers to keep both drugs for now. Need to give Danazol time to get counts into normal range. Retest in 7 weeks.

Danazol update, after 15 weeks. Have been on 50mg of Danazol but taking 12.5mg Promacta every other day. Fewer headaches taking it every other day.

Blah, the count was only 44 yesterday. How to explain this? Well, first the Promacta dose is half, that is a certainly a contributor. Past that it is less clear. Some back of the envelope calculations suggest if Danazol isn't giving me any more benefit, that the count would have been around 60. So that leaves another 16 to account for to get down to 44. All I can come up with is my Celiac disorder. Let me explain. This past Sunday I ate some oysters. The next day I had a bad Celiac Dermatitis flare on my forehead/hairline. I had forgotten that the iodine in shellfish are a known cause of flairs in Celiac. More info on this Celiac flair and platelet count relation here. So that's my story. Half Promacta dose, no more Danazol benefit, and a Celiac flair, dropped my counts from 94 to 44.

What to do going forward? My doc thinks my liver is metabolizing enough of the Danazol to stop a further platelet count increase. Now going up to 200mg dose of Danazol. Doc mentioned that we can probably cut back to 100mg for the long term but try 200mg to get counts up quickly enough to discontinue Promacta.

Oh boy. At four times the previous dose, at the very least, I expect lots of pimples. Hah, and looking more like a teenager again. I bet you are jealous.

Just now read your post about the video. I'm not sure how I missed it. Suzanne Humphries hasn't spoken about Lupus specifically, but she does talk about autoimmune disorders in general. She has spent the past nine years doing nothing but research, 8 to 12 hours a day 7 days a week. She is the most knowledgeable doctor I've ever seen. She believes in bringing patients to a better state of health through nutrition and natural means. All of her videos are very good and informative. Makes you think. I started taking 2,000 mg's of Vitamin C daily last fall and so far, have escaped all viral and bacterial infections this winter. That is highly unusual for me.

I don't believe that the rise in deaths is due to opiates. It's cancer, autoimmune disorders and unhealthy lifestyles. Heck, even the infant mortality rate in the US is high compared to other developed countries. Babies aren't doing drugs.

Hal9000 wrote: ... My doc thinks my liver is metabolizing enough of the Danazol to stop a further platelet count increase. Now going up to 200mg dose of Danazol. ...

Ok, right off the bat: 'blah'. Double blah even.
After 7 weeks of 200mg Danazol (only), count was a blazing 39. Liver enzymes were out of range high. Seems that my liver just won't give up metabolizing Danazol. The characteristic acne from Danazol was just as bad at 200mg as it was at 50mg. Back to 12.5mg Promacta.

I hate being out of ideas.

Asked my doc about Imuran. She reinforced the notion that Promacta is safer. I asked about Imuran but meant to ask about CellCept, since that is a row 3 drug and I have a row 3 steroid and IVIG response. I'll ask her next time about CellCept but I'm expecting the same answer: Promacta is safer.
I also wonder about going back to Danazol but at an even lower dose than my initial 50mg strength. In my reading on the drug, some reports have mentioned that a small number of patients do better on lower doses than higher doses. Insignificant count rise on 600mg but a nice rise on 100mg, or something like that. Specifically, I wonder about alternating drugs. Taking Promacta (12.5) one day and Danazol (50) the next.

Boo! I'm sorry to hear that your Danazol remission idea isn't working out. You never know, maybe you will need even less promacta this time around to get your counts in the safe range (maybe a chance for a silver lining?). Good luck in figuring out your next steps going forward. Thanks for the update!

Sorry to hear that, Hal, but I'm not surprised. If Danazol were such a great success, it would be used more often.

I agree with your Dr. about Promacta being safer than Imuran or CellCept. Those are wicked drugs and the long-term side effects are not good.

Bad news Hal sorry to hear it.

By the way on your table you need to amend one of the links at the bottom because I have just discovered the link to ITP, A Practical Guide for Nurses and Other Allied Healthcare Professionals has changed to www.ebmt.org/sites/default/files/migration_legacy_files/document/EBMT%20Practical%20Guides%20for%20Nurses_Immune%20Thrombocytopenia_ITP%20Handbook_UK.PDF .

You posted I have a row 3 steroid and IVIG response. The row 3 linking directly to your table bottools.com/Hal/ItpTypes.html .

How did you do this? I'm sure I've done it in the past but cannot remember how..The joys of an ageing brain !!!!!

Anne, I noticed that link fail to the nurses guide as well. I'll be updating my web page soon. Main changes, to the remissions columns: Cytoxan needs to be added to row 1 and Cyclosporin A needs to be added to row 4.

Perhaps a few HTML code examples would be most helpful in understanding links. Hard to show actual code here on a web page. So replace parenthesis with brackets in the examples below for what will actually work.
plain text
(b)bold(/b) text
(color=red)colored(/color) text
(url=http://pdsa.org) link (/url) text

A '(b)' means to start bold text and a '(/b)' means no more bold and go back to regular text. '(color)' and '(url)' tags work similarly, but have attributes such as '=red' and '=url://pdsa.org'.
If you go to this online HTML editor and click the 'Source' button at the top, on and off, it will toggle between HTML code and what will actually be seen in one's web browser.
The problem with the 'link' button here on PDSA is that the code you get is malformed. It inserts the URL into the 'text' part as well, and it shouldn't do that. You have to erase the URL in the text to get it to look like a normal link.

How is that? Any better?

momto3boys wrote: ... You never know, maybe you will need even less promacta this time around to get your counts in the safe range (maybe a chance for a silver lining?)...

Mom(23b), this is looking possible. It's been 3 weeks since dropping Danazol and picking Promacta (12.5mg) back up. Count last week was 70 and this week is 67. Last year after soaking at this Promacta dose, I scored a 52 and 56. These recent higher counts appear to have significance, especially since my counts vary very little (apparently because of 'killer T' cells - rows 3 & 4, instead of 'B' cells - row 1). It's hard to say about this little used drug though. Some of it could still be circulating, or, it could be gone by now. Next test is 4 weeks. Thinking out loud here. If counts are above say 60 then, it would be imperative to retry a lower (25mg) dose. If counts are below 60, then not so much.

Sandi wrote: ... If Danazol were such a great success, it would be used more often...

Sandi, absolutely. Some of these ITP drugs only help a small percentage of the population.

Hal9000 wrote: ... Count last week was 70 and this week is 67 ... Next test is 4 weeks ... If counts are above say 60 then, it would be imperative to retry a lower (25mg) dose. If counts are below 60, then not so much...

No change. No change at all !
Latest count is 68. Looks like Danazol and I are going to have another rodeo.

Hal9000 wrote: No change. No change at all !
Latest count is 68. Looks like Danazol and I are going to have another rodeo.

Latest count is 63. Perhaps the earlier Danazol treatment (ending 11 weeks ago) is now starting to fade.

Talked with doc. Liver ALT is taking its time dropping all the way back down to what it was pre 200mg Danazol treatment. Next test is 6 weeks. Going to deliberately consume some gluten beforehand. Try to definitely confirm or deny its affect on me. Then test in another 6 weeks from then without gluten. Also see if there is additional count fade.

Danazol rodeo redux planned 12 weeks from now. Hi-ho Silver, away.

Hal9000 wrote: Latest count is 63. Perhaps the earlier Danazol treatment (ending 11 weeks ago) is now starting to fade ... Next test is 6 weeks. Going to deliberately consume some gluten beforehand. Try to definitely confirm or deny its affect on me...

Latest count is 61. Looks like a continual slow decline from 70 when Danazol was stopped some 17 weeks ago. I've been on 12.5mg Promacta since.

Ok, I stuffed my face with gluten before this test. I am so glad I did this test! It now looks like I am NOT Celiac. Further, it appears as though I have had seborrheic dermatitis and not herpetiformis dermatitis. I found an over the counter sulfur ointment that totally took care of the dermatitis. All gone now, yea!

Expecting to restart Danazol @ 50mg in 6 weeks.

Hal
Count has only dropped by 9 in 17 weeks it may well hold above 50 without needing to add in anything else.

Annie, yes absolutely.
Before I took any Danazol I have a single data point of a '52' with 12.5mg [strike]miracle drug[/strike], err ahh I mean, Promacta after an extended period. It seems like those T cells are hard/slow to both unwind, and windup, destroying those evil platelets.