It is thought that the worms reduce certain immune responses which help restore homeostasis. The best summary I have found is on Wikipedia. I have seen research papers which have examined the therapy for Crohn's disease, Inflammatory Bowel Disease, Multiple Sclerosis, Rheumatoid Arthritis and Type 1 Diabetes. However, I have yet to see whether anyone has looked into Helminth therapy as a possible treatment for ITP:

en.wikipedia.org/wiki/Helminthic_therapy#Proposed_mechanism_of_action
"Most autoimmune disorders are believed to involve hyperactive TH1 or TH17 immune responses that are down-regulated by the promotion of a TH2 response by helminths. Helminths secrete immunoregulatory molecules that promote the induction of regulatory T cells while inhibiting the function of antigen presenting cells and other T cells. As such, helminthic therapy attempts to restore homeostasis by shifting a hyperactive TH1 pro-inflammatory response to a TH2 response with reduced inflammation."

Helminth immunomodulation is being researched to treat Crohn's disease, Inflammatory Bowel Disease, Multiple Sclerosis, Rheumatoid Arthritis and Type 1 Diabetes. Has anyone come across any research into the treatment of ITP using parasitic worms (helminths)?

Raj, for what it's worth.
Here are the PDSA posts that have mentioned 'Chron'. Might be of some benefit, don't know.

pdsa.org/discussion-group/search.html?query=Crohn&order=inc&searchdate=all&childforums=1

Hello All..especially HAL,
I have been a periodic poster on board for past 2 years. ITP diagnosed since 2017 and had splenectomy in March 2019, I am stable with platelets that hover between 35k and 70k plus I tried every treatment in book prior to surgery. (Did have indium scan done when I flew to London prior to surgery). Regardless, I have some fascinating news. There is a drug that will revolutionize how we treat coronavirus. It is called Leronlimab, a CCR5 blocker that you will hear within next few weeks. Coronavirus creates havoc in body due to significantly high levels (up to 100 times normal level )of the protein RANTES in blood. Leronlimab brings this protein back down to normal and restores immune homeostasis. The viral load goes down to 0 after once per week injections totaling 2 weeks. The reason why I am talking about RANTES and ITP is based on the research below:

There have been medical journals that indicate the elevated RANTES levels in individuals with ITP after doing extensive testing on plasma chemokine levels.

In reference to a specific medical journal, "Significance of Chemokines and Soluble CD40 Ligand in Patients with Autoimmune Thrombocytopenic Purpura" it indicates the following:

We investigated the levels of various chemokines and soluble CD40L (sCD40L) in ITP patients, in order to determine the influence of CD40-CD40L interaction on the pathogenesis of ITP. We found increases in MCP-1 and RANTES levels in ITP patients compared with those in healthy individuals. Thirty-eight of the 65 ITP patients (58.5%) had elevated levels of sCD40L. We found significant decreases in platelet counts in sCD40L-positive ITP patients. Although the sCD40L level did not differ significantly between the control and nonimmune thrombocytopenia groups, but among ITP patients. sCD40L level was significantly higher in those with untreated ITP than in those with treated ITP. In addition, significant increases in RANTES, MCP-1, sCD14, and sP-selectin levels were observed in sCD40L-positive ITP patients, although sE-selectin levels were not increased in such patients. For other factors examined, however, there were no differences in level between sCD40L-positive and -negative ITP patients. These findings suggests that there are two groups of ITP patients, one with elevated and one with normal of sCD40L. ITP cases in which sCD40L was increased appeared to involve changes in platelet counts and monocyte activation. The pathogenesis of ITP may in some patients include alterations of the CD40/CD40L pathway.

Furthermore, I have attached 1 more huge piece of information from a medical journal that can help you get ITP as a possible indication for Leronlimab.

"Pulsed high-dose dexamethasone modulates Th1-/Th2-chemokine imbalance in immune thrombocytopenia"

This is an excerpt from the medical paper (Journal of Translational Medicine, October 2016)

CCL5 is a CC chemokine that activates cells by binding to Th1-associated CCR1 and CCR5.

CCR5 interaction has been reported in a number of Th1-associated diseases, such as rheumatoid arthritis, multiple sclerosis [32], human immunodeficiency virus 1 (HIV-1) infection [33], Crohn’s disease [7], and oral lichen planus [8].

In this study, for mRNA levels of CCL5 in PBMCs, no significant difference was found between any group; however, plasma levels of CCL5 in active ITP patients was lower than in controls, perhaps because platelets are the principal source of CCL5 [34]. With the increase of platelet counts after pulsed HD-DXM treatment, there was an increase of CCL5 concentration in plasma.

Thus, an important role for CCL5 in the pathogenesis of ITP is not evident; there are possibly other chemokines [35] binding to CCR5 to destroy platelets.

Shouldn't Leronlimab prevent chemokines from binding to CCR5? If this is correct, could this resolve ITP?

Please remember, according to this excerpt, ITP patients had lower levels of CCL5 but when administered dexamethasone, platelet levels began to rise. This confirms restoration of the CCLS (which was decreased) / CCR5 (which was elevated) balance which should alleviate ITP.

To all who have ITP, I am going on record to say that the persistence of ITP is due to the CCL5/CCR5 axis being off. Like I have said, ask your doctor about your RANTES levels in your blood. I GUARANTEE on my health that you will find that it will be elevated. Furthermore, I guarantee that if you bring your RANTES levels down in your blood, you will see your platelets return to normal. Leronlimab restores homeostasis and when administered, I believe can resolve ITP.
Thank you.

Wanted to give quick update on my daughter - the hematologist stopped Promacta 75mg for now and her platelets increased to 66 yesterday. I have a feeling she might have some other auto immune condition like IBD related to Crohn's disease which is causing her to drop platelets. I have read an old article in BMJ that there is a chance that one auto immune condition may cause another condition. I think we are treating and focusing on ITP rather than the underlying condition of IBD. I asked for her GI to do endoscopy and colonoscopy once her platelets are stable at >100K. I wanted to make sure that this might be the root cause of her ITP although the doctors wouldn't agree with me. I sent them the study from BMJ and they said there is not much research in that area. I will keep you all updated on this. For now it's just wait and watch until her platelets go upwards to 100k.

Hi!
Sorry to hear about your husband. Most people on this forum have ITP, which is not treated with Humira.
I haven't seen anyone mention Crohn's or UC or RA on here recently, but maybe someone that has some experience with the drug will chime in soon.

That said, both blood cancers and humira can cause a low platelet count, so it could be either. I assume that with cancer other blood cell types would be abnormal in number too. So if it's only his platelets that have dropped, and this started right after he began his humira treatment, I wouldn't worry much until I spoke with the hematologist for their opinion.

I wish you and your husband all the best and please keep us updated.
Neve

I had to post a response to this. I have been on a roller coaster of ups and downs with my platelets for the last year and a half.
I have been on a low dose of Prednisone which gets my counts up to safe, but when I have tried to taper below 20mg, my count has dropped way down. The last dip was 27K in August when I was at 5 mg. I had blood blisters and petechiae, so I went back up to the 20 mg. Count went up and I tapered down to 15 mg. The goal is to get me to a safe count at the lowest dose possible of Prednisone.

So, I read your post and I remembered with my last relapse of ITP about 10 years ago, I started taking probiotics and I completely recovered and counts returned to normal. (Normally, I run high in the 400K range, so until I see those high counts, I know that I haven't fully stabilized yet. I have no spleen, hence the high numbers when not dealing with active ITP.) When my counts returned to normal 10 years ago, I was only taking the probiotics to counter the negative affects of the Prednisone (like candida overgrowth), but at the time I picked up the book Patient Heal Thyself from Jordan Rubin and I realized it must have been the probiotics that did it. He tells the amazing story of his battle with Crohn's Disease (which is auto-immune) and how he was dying and how after all other treatments failed, his father received these packets in the mail from a friend who was a chiropractor or naturopath or something like that. It turns out that the packets were full of probitoics made from soil. When he took the HSO probiotics, they brought him back from the brink of death and not only healed his gut, but his health completely turned around.

Anyway, to my point...I ordered some of the most potent probiotics I could find through Garden of Life the end of August....and within 3 weeks, I have gone from a platelet count of 176K to 462K! Also, for the first time since this began, my neutrophils and lymphocytes have evened out. I usually have high neutrophils and low lymphocytes with the low platelet count. I know that Prednisone can sometimes affect your other counts, but I haven't changed my dose much to experience such a drastic affect.

Here are my recent counts:

8/21
Platelets 99K
Neutrophils 81.1
Lymphocytes 13.2

9/1
Platelets 176K
Neutophils 77.9
Lymphocytes 13.2

9/27
Platelets 462K
Neutrophils 48.7
Lymphocytes 37.2

So, the doctor asked me what I was doing when I went this week. I told her all I did was start taking some probiotics and she told me to keep taking them. I am tapering the Prednisone down again and we will see what happens, but for me, this is great news!

Hey Mark,
Havent been on the site for a few years because splenectomy worked great. Had a few infections since then, one the first week. The first 2 years I ended up in the hospital about 5 or 6 times with an infection. Usually something weird, but even the flue would put me in the hospital for 3 or 4 days because it would be so bad. The 3rd year only ended up twice having to stay in the hospital. I think this is going on the forth year and i have been good. I am a little more paranoid now than I was in the beginning. I do not wait for my temp to get above 101 or what ever they told me to wait till before I come in. My temp seems to run low, 96.8 (not 98.6) so when my temp gets at 99.0 I start to watch it real good and start taking my emergency antibiotics. At 99.5 I head into the hospital, they send me right home, but I feel better about it that I covered my bases. Had ulcerative colitis in my early twenties and at times would have shot my self if I had a gun. My son has crohns real bad, so I do know what that is like. I dont know about the rest of the things you have, but sounds like your plate is full. Must be hard with colitis and ITP. That would make me worry. What are your numbers?
I would get the splenectomy again. My numbers had dropped to 3 before then splenectomy. My numbers had started to drop sooner and faster with the more treatment and different meds they would try. Some of them went from a few days or a week to just a few hours before they would fall out. No one wanted me to get a splenectomy, my wife, mother, pc doc, another hemo doc, people on this. Everyone except my VA hemo doc. She had said nothing is or will work for you, and I believe she was right.
I do worry about what will happen if my numbers do drop again. I also do think that when I do die it will be by an infection, just hope its not to soon.
My ITP was triggered by medication they had put me on 2 weeks before.
I hope this helps a little.
Neil Buck

Dani,
Sorry you have IBD and ITP! My husband, who does not have ITP, had IBD. His experience is that the best thing you can do (when you get out of the hospital) is follow the SCD diet. He stayed strictly on the SCD diet for about 2 years. He gradually started feeling better and better. It is a tough diet to be on, but was well worth it for him. He found that after 1.5 years, he could eat more things without any bad reactions. Most Dr's will tell you that diet has nothing to do with IBD, IBS, crohn's etc. But that is the way they used to treat it before drugs became popular. Google it!

Hi...sorry any of these type of boards are necessary, but thankful they exist because they offer a wealth of information!

DH is 72, suffers from Crohn's Disease, (40+ years), and chronic anemia. He has suffered two pulmonary embolisms and is on Coumadin for life. For Crohn's he takes Humira, Pentsa, Prilosec, Prednisone and for blood pressure he takes Atenolol. He has two abdominal fistulas, a "gift" from his last intestinal resection. He has only about 10" of colon left. He also has Stage 3 Renal Disease and while he takes no meds for Diabetes, and recent testing has been good, he monitors blood sugars 2-3 times a week. A numbr of years ago in trying to determine the reason for low iron, there was a "tentative" diagnosis made of MSD. He received Infed, Venofer infusions and Procrit injections none of which had any affect. In September 2012, and again in 2013, he received Feraheme infusions which helped. He had Feraheme again in April of this year without any improvement.


On Monday of this week, we received a phone call from gastro that his platelets were low, (64) on 4/30, while on a blood draw from 4/2 they had been 150. Gastro said he needed to see his Hemotologist asap. We did so, and the Hemotologist was not overly concerned, as DH's platelets have previously, (2012)jumped all over the place. (64 is the lowest number I saw in his chart, however.) These low platelets were news to us as we had never been told about them before...they always focus on iron and Hemoglobin numbers. During this period in 2012, DH suffered from EXTREME FATIGUE...I mean showering and getting dressed exhausted him...yet no one mentioned these platelet numbers to us! DH routinely sees a Hemotologist, Gastroenterologist, Urologist, Nephrologist and a Cardiologist...during the period of extreme fatigue, he visited ALL of them specifically trying to find an answer to the fatigue! Not one mentioned low platelets!

Hemotologist yesterday said "watch and wait", repeat blood work in two weeks. That platelets had jumped all over before and righted themselves and he anticipated they would again. Then yesterday we saw Gastro, he didn't seem to be too happy with response from Hemotologist. He ordered liver function testing.

DH has so many things going on healthwise and I am reading here that should he have ITP, many of the drugs used to treat it would not be advisable for him due to other conditions. I know there is the possibility of MSD becoming Leukemia, but with the numbers being what they were in 2012 and having recovered, I can't see that as the problem. (I know this is almost 2 years later and anything can change as well.) I am just so frustrated with the medical community as a whole that I don't know what to do. The doctors he sees are well respected in their fields and his primary care physician is wonderful. However, I feel as if we are just a source of regular income for all of them and they don't really give two hoots! Thanks for reading my rant and any input would be welcome.

tamar wrote: Do you have the option of switching hematologists? The reason I ask is that your current hematologist seems to have zero experience with the treatment she is now recommending/administering. But someone that she is talking to does. I'd vote for cutting out the middleman (middledoc?) in this situation.

Actually, I think even the hema she's seeing is looking to transfer her care to another doctor. She is recommending that we have an appointment with the colleague with whom she consulted this a.m. I respect that and it shows, at least to me, that this doctor recognizes her limitations and will not let hubris jeopardize my wife's care.

Until just the last few days, my wife has resisted doing too much reading on ITP because she didn't want to fill her head with bogus ideas or worst case scenarios. She has now read up and she's concerned about the mortality rates she read. Myself, I've seen 15% mortality as a number for patients who've had unsuccessful splenectomy. However, I don't really know if she fits the mortality profile. She is only 39 and, other than the Crohns (which is very much under control) she's actually in very good health.

And she's dang fine looking. Just gotta say that.

I thank you all for your thoughtful responses and helpful input. We are all trying to stay positive, but it has begun to be harder and harder. This began October 2 and it seems like it has been nothing but disappointment and treading water since then. I'm just trying to breath deep and keep things simple.

Edited to add: the colleague she spoke with this morning is not one of the doctors suggested by this site, but he is a partner of the doctor recommended here. So, that perhaps is a good sign.

Erica,

Thank you kindly for your input. Her Crohns is very well controlled, so there is really nothing to track there. Even now that she has been off her Crohns maintenance med since October 2, she is not having any Crohns problem.

Naturally, we wonder if there is any connection between the ITP and the Crohns since they are both autoimmune, but we're been told by numerous doctors that there is no causal link between the two.

eklein wrote: Mcochran,
I don't have Crohns but I had another problem that was causing me major intestinal problems and inflammation. I have found that when I got that problem resolved (and I had the problem for many years - I was lucky and it can be addressed with major changes in diet) my counts bounce back. When I lapse in the diet and have a flare up, my counts drop.

My point is, I wonder if your wife can track her counts with her Crohns, and if the Crohns is calm, maybe that will resolve the platelet issue.
Erica

Mcochran,
I don't have Crohns but I had another problem that was causing me major intestinal problems and inflammation. I have found that when I got that problem resolved (and I had the problem for many years - I was lucky and it can be addressed with major changes in diet) my counts bounce back. When I lapse in the diet and have a flare up, my counts drop.

My point is, I wonder if your wife can track her counts with her Crohns, and if the Crohns is calm, maybe that will resolve the platelet issue.
Erica

October 2 my wife was admitted to the hospital with a 2,000 platelet count. 3 days later she was out after 3 days of IVIG treatment. We thought it was behind us.

November 1 symptoms reappeared and she was readmitted. IVIG didn't work this time around and she ended up having a splenectomy yesterday morning at 9:00 a.m. Sadly, the blood they took this morning shows that her platelets have actually dropped and so it seems the procedure did not solve the problem.

Her doctors are good but I feel like they are not giving her the whole picture.

Not sure what the next step will be. Feeling very lost right now.

She also has Crohn's disease which was diagnosed in 2005. Her immune system hates her.

(Accidentally posted in wrong forum before, copied over.)