Hopeless, depressed, suicidal.

Hi All!

This is my first post on this forum. In addition to this, English is not my mother language(I couldn't find such a good forum in my country), so please ignore possible mistakes.

So...I' m thirty and was diagnosed in July`13. I noticed some enormous bruises on my shoulders. I visited my GP, who sent me for a CBC immediately. Platelet count was 3k.
Since this time I am in single digits, very often being at ZERO level, with one two - weeks break after getting immunoglobulines.

Since this time my life is an almost non-intermittent stay at very depressive cancer and blood diseases department of a hospital in my city.

Failed treatments:

- corticosteroids - predison, encorton (tabs), dexaven, solu - medrol (IV): all just helped for couple of days; next I became refractory for this kind of treatment at all;

- immunoglobulins - first round was successful and shoot up my platelet level from single digits to 100k + for about two weeks; next round was without an anwser; besides it immunoglobulins are expensive and docs don't want to give it due to short lasting efffects;

Immunosupresants: Immuran - no efect besides sides effects; Cyclosporine - side effects only.

TCM - herbs with no effect;

Hypnosis - no effect;


After second bone marrow biopsy docs changed my diagnosis for a myelodysplatic sydrome (mds). They took a threpanobiopsy and I had to wait for 5 weeks in a hospital, during Chirstmas and New Years Eve for a result. A result showed thrombocytopenia instead of MDS. Waiting the diagnosis was a great stress for me. I feel like having PTSD symptomes since that time.

Next I had a splenectomy which helped only for one week - digits shoot up to 250k and next plummeted to 9k within 3 days.

After all my Hemo had no time for me. I visited another hemo in the same hospital who gave me Promacta samples. I have supplies for two weeks only, because Promacta isn't covered by insurance system in my country. I can afford for only 3 months of treatment on my own. I am considering to take four rounds of Rituxan which is the same cost as 3 moths of Promacta treatment and can give more durable effect.

I feel that my health has been seriously affected by all the treatments. I still have pain after surgery, which was made as a laparotomy two weeks ago.

Atfer eight months of "treatment" I feel very tired and hopeless. My counts are still in single digits. Every day is a fear of having bleeding symptoms and going back to the hospital for platelet transfusion and next senseless, long stay. Today I have spotted some petechiae on my body which is a sign that my platelets is below 5k so I am in fear again.

Before I developed this bloody illness I was a strong man, had a great well paid job with possibility of an international travelling, had a lot of hobbies such like caving, climbing, rope jumping, motocross, travelling and many more. I had a lot of acquaintances, was a very sociable and popular person, spending a lot, lot time on amusements but also helping others.

Now I am a weak,useless guy, feeling like a disabled (sevre and refractory ITP makes you like a disabled). I lost my seff - confidence, left almost all the frendships: I don't enjoy being with people anymore, have no partner (I broke up before developing an illness and now don't want looking for someone), and last but not least I am loosing my job and will have to sell my flat..

I am starting to getting crazy because wasting all days in a hospital or in bed. Staing in single digits and having bleeding symptoms I rarely leave a hospital or a home. I just don't want explaining to people what is going wrong with me and don't want to start bleednig in public. But my biggest scare is having an intercranal bleeding and survive as a vegetable demanding a full-time care. I don't want to destroy someones life for taking care on me.

I lost all the hope and life enjoyment and considering having a car crash (hitting a tree at max. speed) to finish this struggle. Making pain to my family is stopping me, but I not sure if I will manage to live like that for a long time.

Hi there. I don't have much to offer but wanted to write to let you know that people care. It sounds like an extremely stressful and horrific experience to live through! Myself I struggled only a short bit with the ITP and then had a splenectomy which is far has been successful but I currently have other significant health issues and have had them in the past as well. The ITP struggle is very difficult! The fear, the emotion, the toll meds take on your body and emotions at the best of times and it sounds like you have gone through far more then most!

I wonder if you have been able to see a counsellor? I went to one a few times at the height if my struggles with ITP and have to say I can't imagine if I hadn't! Just talking it out loud to a stranger helped me. I didn't want to burden others but this being their job was so different! I encourage you to try it if you can!

Lastly, reaching out and posting here is great as well. There are some wonderful and extremely knowledgabe people who post here. It is also helpful to see what others are going through and have gone through just to know your not alone.

While I feel this isn't the most helpful I only wish there was more to say! Life will get better...day by day in some way!

Zomzombie,

ITP can be a very frustrating challenge, sometimes with no answers at all. My heart goes out to you. There are those of us here that can and will listen - venting is part of dealing with ITP.

I found the first year to be the hardest - getting used to it, not knowing what to expect next and learning not to let ITP control your every move. 6 years later and I don't have many answers but I am more comfortable with the fact that I choose how to let ITP effect my everyday life. Some days are hard.

My advise is - read all you can - this site is full of very valuable information and companionate ITP'ers. To have an intracranial bleed is VERY RARE. You will find most of us who have had this for a while know more than most doctors about ITP and asking questions here really helps.

You have had a rough start I will be happy to listen and let you vent when you need to.

Cindy Ann

Zomzombie

I known how you feel, I got diagnosed right after my 31st birthday and just turned 33. I tried everything and was hospitalized 3 times last year and the last one ended up taking my spleen. I still have pain from surgery (not daily but most days).

When I was first diagnosed I was suicidal as well. I went through all 5 stages of grief, just like losing a loved one. But some days go back to being pissed at the world and why me. Then other days I am right as rain. I just lost someone with something like ITP, she committed suicide. Ever since I found the nightmares from the Promacta have gotten worse and I am lower my dose and will talk to my doctor. I know wake up more tired than I went to bed.

We are all here for you!!! If it wasn't for this site and the lovely words and support from everyone here I don't know how I would have made this far. They educated me here and had my back.

Today is not a good day for me but got up and went to work, I would've just loved to stay home in bed.

Take care of yourself, I was working with counts at 0-10k but didn't have a choice, needed the money to pay bills. I should have been home in bed, I didn't take care of myself. If I ever drop like that again will be home in bed with my dogs.


Xoxo

Zomzombie,

I agree, the first year of ITP is very tough. This March, I will be my 3rd year. I have been hospitalized about 4 times, went through Prednisone, Dex, 4 rounds of Rixtuan (16 infusions), and finally, been on Promacta since May 2013. However, I crashed just last week and I'm back on Prednisone and my hema increased my Promacta. But, hang in there. We only have 1 life to live. The people here on this forum is very helpful and encouraging. They all have been through it...and sometimes, it just helps to vent or cry.

Just remember, "it won't rain all the time".

My heart goes out to you Zomzombie. You have been through so much. I know what it is like to be in and out of the hospital and to have doctors trying different treatments and wondering if one of them will work from you. It truly is scary. And I think a lot of us have dealt with depression somewhere along the way and perhaps even thoughts of suicide. But please hang in there. My thought is that if I do anything like that to myself then the ITP and all the other stuff win. And I don't think we should let them. I know some may not believe in it, but therapy was something that helped me a lot and is still helping me to keep fighting to hopefully one day to get my life back to at least close to what it was before I was diagnosed with ITP (hopefully in remission). I am new here too, and like you I was so grateful to have found this forum. It is a good place. I have found that people care about each other here. It is a very special place. Hopefully it will help you to know that you are not alone...

Zomzombie wrote: Hi All!

This is my first post on this forum. In addition to this, English is not my mother language(I couldn't find such a good forum in my country), so please ignore possible mistakes.

So...I' m thirty and was diagnosed in July`13. I noticed some enormous bruises on my shoulders. I visited my GP, who sent me for a CBC immediately. Platelet count was 3k.
Since this time I am in single digits, very often being at ZERO level, with one two - weeks break after getting immunoglobulines.

Since this time my life is an almost non-intermittent stay at very depressive cancer and blood diseases department of a hospital in my city.

Failed treatments:

- corticosteroids - predison, encorton (tabs), dexaven, solu - medrol (IV): all just helped for couple of days; next I became refractory for this kind of treatment at all;

- immunoglobulins - first round was successful and shoot up my platelet level from single digits to 100k + for about two weeks; next round was without an anwser; besides it immunoglobulins are expensive and docs don't want to give it due to short lasting efffects;

Immunosupresants: Immuran - no efect besides sides effects; Cyclosporine - side effects only.

TCM - herbs with no effect;

Hypnosis - no effect;


After second bone marrow biopsy docs changed my diagnosis for a myelodysplatic sydrome (mds). They took a threpanobiopsy and I had to wait for 5 weeks in a hospital, during Chirstmas and New Years Eve for a result. A result showed thrombocytopenia instead of MDS. Waiting the diagnosis was a great stress for me. I feel like having PTSD symptomes since that time.

Next I had a splenectomy which helped only for one week - digits shoot up to 250k and next plummeted to 9k within 3 days.

After all my Hemo had no time for me. I visited another hemo in the same hospital who gave me Promacta samples. I have supplies for two weeks only, because Promacta isn't covered by insurance system in my country. I can afford for only 3 months of treatment on my own. I am considering to take four rounds of Rituxan which is the same cost as 3 moths of Promacta treatment and can give more durable effect.

I feel that my health has been seriously affected by all the treatments. I still have pain after surgery, which was made as a laparotomy two weeks ago.

Atfer eight months of "treatment" I feel very tired and hopeless. My counts are still in single digits. Every day is a fear of having bleeding symptoms and going back to the hospital for platelet transfusion and next senseless, long stay. Today I have spotted some petechiae on my body which is a sign that my platelets is below 5k so I am in fear again.

Before I developed this bloody illness I was a strong man, had a great well paid job with possibility of an international travelling, had a lot of hobbies such like caving, climbing, rope jumping, motocross, travelling and many more. I had a lot of acquaintances, was a very sociable and popular person, spending a lot, lot time on amusements but also helping others.

Now I am a weak,useless guy, feeling like a disabled (sevre and refractory ITP makes you like a disabled). I lost my seff - confidence, left almost all the frendships: I don't enjoy being with people anymore, have no partner (I broke up before developing an illness and now don't want looking for someone), and last but not least I am loosing my job and will have to sell my flat..

I am starting to getting crazy because wasting all days in a hospital or in bed. Staing in single digits and having bleeding symptoms I rarely leave a hospital or a home. I just don't want explaining to people what is going wrong with me and don't want to start bleednig in public. But my biggest scare is having an intercranal bleeding and survive as a vegetable demanding a full-time care. I don't want to destroy someones life for taking care on me.

I lost all the hope and life enjoyment and considering having a car crash (hitting a tree at max. speed) to finish this struggle. Making pain to my family is stopping me, but I not sure if I will manage to live like that for a long time.

Hi there!

thank you for all the support and sharing your stories - consciousness of not being alone always helps to struggle with problems.

Since I crashed just 3 weeks after splenctomy I have tried Promacta (Revolade is an european trade name). After first week of taking 50 mg my platelet went up from 9 k to 15 k.

After next week on 50 mg my level was over 300 k and a dose was reduced to 25 mg which gave me a level about 50 k.

After 3 weeks of taking Promacta it had to stop it (had no more drug left) and my today`s CBC test has shown 6 k - one week after stopping (yes I know that Promacta is a maintenance drug, but it is also very expensive and not covered by my insurance).

Today I had also a meeting with my Hemo and she said that she is feeling helpless in my case (not responding for steroids, IVIG, imuran, cyclosporine and crashed after splenectomy,not able to financing a Promacta therapy at the moment).

I proposed trying Rituxan, but in opinion of hemo, taking all the immunosuppresion before and being spleenless gives too serious risk of complications;

She gave me free pack of Promacta (just 14 pce of 50 mg pills) and prescribed Danazol (Danocrine) 2 x 200 mg/day.

So I have some questions:

- Is it worth to start taking Promacta again? I have a supply just for two weeks and I am not sure if I will get more in such a short time (I am sitting at 6k and have some petechae on legs).

- Do you have any experience with Danazol/Dancristine?

- I have a possibility to have Promacta covered by insurance but I would have to change a country of living? Is it worth?

- I would be happy of having stable 15 k without treatment. Now I am about 0 - 5 k. Is it possible to reach this count spontaneous without treatment?

Many thanks.

ZZ

hi ZZ,


In my experience I'd say Rituxin is your best bet. I wonder how long until your immune system is strong enough to have it? Maybe Sandi would know.? I wonder why the hemo didn't give you Rituxin before the other drugs?- thats usually the way its done where I live USA- Rituxin first.

Sounds like you are enthused about Danazol- follow your instinct I'd say. perhaps it would be something to try until your immune system is ready for Rituxin. When I had Rituxin it didn't seem to compromise my immunity at all. I didn't have any colds or illness that year.

Doesn't sound like you're not having much bleeding. I've lived with low counts around 10K for years. Its a risk but so it all is. Knowing that you are okay with counts of 15K is a great step. It took me over a year, maybe 2 years to get that kind of awareness and confidence that I was okay at the lower numbers. to feel comfortable watching the symptoms and trust my body.

Anyway so so glad you didn't crash your car!! :woohoo: the stay in the hospital over Xmas sounds terrrible and I believe you probably did have PTSD, anyone would. Good luck! Hope you find your treatment/remission very soon!

Our immune system (in simple terms) Sorry it is 0600 and my brain will work in simple terms. Works like this. We have detector cells, boss cells, Label cells, than our spleen or liver removes them. When a foreign body enters our blood the detector cells notify the boss who than sends out the right label cells who seeks out the intruder and labels it for destruction than our spleen or liver remove these item.

For itp what ever the trigger our body (detector cells) got confused or something and started labeling our platelets.

The reason the splenectomy can fail is the liver can take over and do the job the spleen was doing. Because the spleen is gone your main filter is gone putting you at risk because your body can't rid itself of things as fast as it used to. So things like infections have a chance of spreading.


Rituxan works in a different way it targets the cells that tag things as bad. That said there are multiple types of cells that tag things bad Rituxan tags only 1 type of these cells.

Your doctor is correct when they say it could put you at a greater risk.

That said if the splenectomy did not fix the ITP and your counts are still hitting rock bottom. That that shows me that your body is clearly able to dispose of things that are labeled bad. So Rituxan may just be an option.


All said and done research research research. Look into how things work all drugs work differently and all drugs have side effects. Looking at the big picture life style, job, symptoms, numbers, treatments, side effects, long term side effect and most importantly "What happens if I try something and it fails what are my options". That will help you decide what to do.

ZZ:

I am glad that your Hemo is being cautious regarding immunosuppresion. She's right about that. I've seen too many doctors throw treatments at patients trying to get counts up but not really paying attention to what that could do to the patient. We did have a woman here years ago who'd had a splenectomy, Rituxan and low dose Prednisone. She became septic and died within 24 hours. I think you should pursue Promacta or N-Plate if possible. Some people have had financial help from the drug company. I don't know how to go about getting that; maybe someone else can help. Using Danazol in the meantime is a reasonable option too.

As far as your emotional well-being, you should seek professional help. ITP can be a struggle but there is always the hope that it will stabilize in time and life is still very much worth living. A year from now (or even months from now), everything could be completely different.

Have you read this yet? If not, it is definitely worth it:

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Just read this. I understand what this man is/was feeling.

I also wonder what ever happens to many of these posters. Sometimes I think, if they stopped writing, that's a good sign because they have gotten over their ITP episode.

Deln:

Most of us have been there. I was at that point once too. I went to work one day, started crying and couldn't stop. I was sent home over a holiday weekend and cried for four days. Most of the time, the depression is caused by steroids. It is real and can take over your life, but there are ways to deal with it. Some people take antidepressants, some meditate, start yoga, or get therapy.

I can tell you that everyone gets past it, so there is a light at the end of the tunnel. I know you can't see that yet and sticking with the steroids will only prolong it. ITP is not worth killing yourself over. It is only a temporary state of mind. Most people agree that the treatments are worse than the illness, so finding a treatment that works with few side effects is the key here. Once you get to that point, everything will look much better and your life will get back to normal.

It is very difficult to deal with steroids; they mess with your body in ways you never imagined they could. No one understands that unless they have been through it. We have.

You are going to get through this. You will realize that ITP is not the end of the world and it is manageable. You just need to find the best way to manage it for you, and you will.

I'm still here and it's a daily battle with my itp. Today ivig's and solumedrol, tomorrow recount aND meet with the doctor.... trying n-plate again

Amber,

I thought of you recently when I posted regarding Dapsone, which I don't recall that you have tried. Dapsone is often overlooked as a treatment for ITP, even though its overall effectiveness is about 55% regardless of other treatments previously tried.

Dapsone is old-school - one of the original sulfa-based antibiotics; it has anti-inflammatory and neuroprotective properties as well. It works often where other treatments don't, including rituxan and splenectomy. There can be side effects, which require monitoring, but they are reversible when treatment is stopped, and are no worse than the side effects of some of the other treatments you have tried.

Dapsone is generally not a cure, and requires continued treatment. A very small percentage of patients achieve remission.

Dapsone can take up to two months to be effective (median = 1 month; range = 0.5 - 2 months) so if you try it, do not give up on it too soon.

You have had a tough road with this Amber. If I remember right nplate worked pretty well for you but you had bad side effects? Maybe if you try it again your dr could help you manage the side effects better. Good luck with it!

One of the possible side effects of Dapsone is death so do make sure you do your research first.

Ann,

Are you implying that Dapsone - properly monitored - is more dangerous than Rituxan, prednisone, dexamethasone, IVIG, high-dose dexamethasone, WinRho, etc.?

Or, are you merely pointing out that as with any medication one must be aware of the risks and take all necessary precautions?

I think I'm pointing out that not all the possible side effects of Dapsone are reversible.

As far as I know, all of the ITP treatments can have "irreversible" side effects. Well worth remembering, whatever the treatment. Especially worth remembering with Dapsone in that it requires monitoring with proper blood work. I am not aware that it is any riskier than the rest, when properly monitored.

It is 1.30 am in the UK so I'm not wading through this systemic review now but it might be an interesting read
www.medicaljournals.se/acta/content/?doi=10.2340/00015555-1268&html=1

Hmm. Interesting. I stopped taking it because it gave me a fever and flu-like feeling. I thought it might be coincidence so tried it again two weeks later, same thing happened. I didn't take it long enough to get any potential response.

Thanks Mrs. B for that article. It certainly was illuminating.

Sandy, I am curious were you monitored while taking Dapsone, and were you made aware of the risks?

Ann, you were right to be concerned about the "irreversible" side effects. At minimum, this study shows that extreme caution, careful monitoring, and prompt cessation at the first sign of trouble are critical. The difference in outcomes between affluent and non-affluent nations' outcomes is immense, presumably based on quality of medical supervision and treatment.

The study reports that based on other studies, the rate of hypersensitivity response (HR) to Dapsone in general is 1.4%. Based on their analysis, in affluent countries 2 out of 93 reported cases of HR were fatal. This would yield n overall fatality rate of 2/93 x 1.4%, or 3 fatalities per 10,000 patients receiving treatment with Dapsone. This might not seem very high, but it is if you are one of the three!

There are some problems with this study concerning the potential for publication bias. For example, this study relies heavily on combining individual case studies as though they were chosen at random. Fatal outcomes might be more likely to be published than uneventful outcomes, thereby distorting the data. Biased or not, the data clearly show the importance of proper medical care when using Dapsone.

Egads! The mortality rate for laparoscopic splenectomy is 3 per 1301 patients.

www.bloodjournal.org/content/104/9/2623
Splenectomy for adult patients with idiopathic thrombocytopenic purpura: a systematic review to assess long-term platelet count responses, prediction of response, and surgical complications
Mortality was 1.0% (48 of 4955 patients) with laparotomy and 0.2% (3 of 1301 patients) with laparoscopy.

That's more than 7 times higher than for Dapsone!

Here's one for rituximab:

www.ncbi.nlm.nih.gov/pubmed/24151854
Preliminary analysis of mortality associated with rituximab use in autoimmune diseases.
These preliminary data suggests that physicians using rituximab to treat autoimmune diseases should monitor their patients closely, especially their B-cell levels until they return to normal, be vigilant for possible sources of infection, and be aware of potential fatal outcomes.

Has anyone here had their B-cells monitored with Rituxan?

No, I was not monitored or aware of the risks. He may have asked me to have blood work every other week or once a month, but I don't remember. I wasn't on it long enough to have to worry about that. I asked to try this, my doctor didn't suggest it. This was probably in 1999 or 2000 and there wasn't as much info available. Plus, I didn't research things like I do now since I'd never really had problems with any meds other than Prednisone at that point. There was a woman named Sunny here on the PDSA who treated with it and had success. That was all I wanted to know, so I asked to try it. As I recall, she is the only person that I know of who has successfully treated with Dapsone.

Anyway, I took it for a few days, felt sick and luckily, knew enough to stop taking it. Thinking it might be coincidence, I tried it again two weeks later. I felt sick again so stopped the drug. That was the end of that. I didn't take medications seriously enough back then. I was younger and naive.

You know, I have read many times over the years that the risk of death from infection is greater than the risk of death from bleeding. I'm sure the treatment risk rises even more when you add other adverse side effects and thrombosis. That is why I cannot understand over-treating and kitchen sink mentality.

Anyway, I can remember only a handful of people over the years (since 2001, maybe?) talking about having B cells monitored. It is not standard practice.

This topic has you on a roll, huh?

On a roll... yes!

Reply Topic: Hopeless, depressed and suicidal.

When I think of Amber getting weekly IVIG because nothing else seems to work, and getting a splenectomy with all the risks it carries, both postoperatively and into the future, and there is a drug that is 55% effective even in cases like Amber's, with a reasonable risk profile WHEN MONITORED PROPERLY and nobody seems to be aware of it because it is out of patent and no drug company can make a bazillion dollars off of it...

Reply Topic: Feeling Hopeless...

... or fordchels88 (I have a son born in '89, who just turned 26 and so is off our insurance and can't afford Obamacare). Fordchels88 is apparently being pushed toward a splenectomy because she has no insurance, when a super-cheap pre-WWII antibiotic might make all the difference...
... yes, I am on a roll. I am glad others are challenging me, because it is important to get this right.
I think there is something to Dapsone that is being seriously overlooked, at least as an alternative to splenectomy, or when nothing else works, and counts are dangerously low. It's one more tool in the toolbelt, and it is being overlooked. Sure there is risk, but what is the long term risk of prednisone? and all of the other treatments?
[end of rant]
I do agree we overtreat in general. I also think doctors are not knowledgeable, open, and cautious enough about risks of various treatments. Ellen's doctor under-stated the risk of infection with Rituxan combined with high-dose dexamethasone while Ellen works in an HIV clinic exposed to every opportunistic infection imaginable. If she has it to do over again, I think in her case Dapsone might be preferable to Rituxan with HD-DXM.

Sadly, Rob, Dapsone doesn't have a good success rate with the splenectomised, so maybe not great for Amber. Or so it says in the international guidelines led by Dr Provan. I haven't checked that out anywhere else. I think it's not used much in the UK because mycophenolate has become the steroid sparing drug of choice.

I think people are pushed to splenectomy because of ignorance. Doctors don't keep up with research and thinking. They don't know that the latest research on the spleen has shown it to be far more important than once thought. Some will still say the spleen does little and can be removed with no effect. They should all read this csb.mgh.harvard.edu/highlights/the-spleens-newly-discovered-function . That's my rant for the day over.

Thanks Ann..yet another reason to hold onto my perfectly healthy spleen...

Ann, I checked out the International Guidelines, and they do say what you say they say:

www.bloodjournal.org/content/bloodjournal/115/2/168.full.pdf?sso-checked=true
International consensus report on the investigation and management of primary immune thrombocytopenia
Drew Provan,1 Roberto Stasi,2 [et. al.]
Dapsone. Dapsone is a moderate corticosteroid-sparing agent that is usually administered orally at a dose of 75 to 100 mg/d.75 Dapsone may delay splenectomy for up to 32 months in patients who have not responded to first-line corticosteroid therapy (evidence level IIb). However, splenectomized patients have a low response rate.76

76. Herna´ndez F, Linares M, Colomina P, et al. Dapsone for refractory chronic idiopathic thrombocytopenic
purpura. Br J Haematol. 1995;90(2):473-475.

Following his reference (76) yields the following:

Dapsone for refractory chronic idiopathic thrombocytopenic purpura.
Hernández F1, Linares M, Colomina P, Pastor E, Cerveró A, Pérez A, Perella M.
Abstract
Fifteen patients with refractory chronic idiopathic thrombocytopenic purpura (ITP) were treated with dapsone (100 mg/d) for 1-31 months. The overall response rate to dapsone was 40%. Five patients responded in 1 month and one patient in 2 months...

And in the body of the same report:

No pretreatment characteristic (age, sex, duration of ITP, previous splenectomy, platelet count before treatment, or response to previous treatments) was correlated with response to dapsone.

The study included four splenectomized patients, two of whom maintained average platelets above 50k.

It appears that the consensus report's assertion that Dapsone is less effective on splenectomized patients is based on a study of just fifteen patients, with only 4 splenectomized patients, for whom Dapsone was more effective than in the remainder of the group.

Most of the studies I can find on Dapsone excluded splenectomized patients, and none focused on post-splenectomy patients. I can find plenty of authors' comments saying that there is no good data on Dapsone for splenectomized patients, but none saying it is ineffective, except the one claim in the International Consensus report which contradicts its own reference.

Perhaps one of the PDSA's medical advisors who were authors of the report can clear up this discrepancy.

Dapsone has never been a popular treatment. I'm not sure why. It isn't often prescribed and never has been. Most articles that I've read give it a 50% success rate. I suppose in a pinch someone could try it (like I did), but there are treatments that are far superior these days. I gave it a shot because my choices back then were more limited. There was no Rituxan or TPO's, so I tried Prednisone, Win-Rho, Danazol and Dapsone. I refused splenectomy and IVIG for obvious reasons.

I don't think we are going to suddenly get doctors on board with Dapsone. Maybe someone here will read your post and decide to give it a try.