Can't be more frustrated

First time logging in... The short story:

Recent birth of my first and only childson. 6 weeks later I wake up with oral hematomas. Platelets were at 4k. Diagnosed with ITP. Not in the best part of the world so ... IVIG ... Two weeks of pred... Back in hospital in a month. Platelets at 7k. Six months down the road... Pred was aweful, crashed below 20mg and can't function above. Three weeks post rituxian and can't stay above 30k. Have visited a few major hospitals with no success in advancing my treatment. At a loss tonight.... Advice appreciated

You are in the same boat as many who are newly diagnosed. It can take time to find the right treatment and get things under control, but most eventually do. In the meantime, try to relax and try not to worry.

Many times, ITP after a pregnancy resolves once the hormones get back to normal. That can take a few months to a year.

Rituxan can take 4 to 12 weeks after the last infusion (sometimes longer) to work. It's possible that it will still kick in.

Read as many posts as you can, you will see the experiences of others and that can help.

I can only echo Sandi's words...
have heard that pregnancy can cause highs and lows
same as with sugar / glycemic numbers. Hang in there
God willing it may be temporary !!
SuperDave

Suppose I should've mentioned I was the father. Wife and kid are doing great.

Unfortunately, frustration is par for the course with ITP. Fortunately, everyone on this forum has been been through it. As with anything like this, it's worse on the front end because of so many unknowns - especially since this isn't a medical condition that doesn't have a 'one size fits all' solution.

Read as much as you can about it, especially here in the forum. Ask a lot of questions. There are still other drugs that may help you, like NPlate - you just need to find the one that does. And you will learn that you can live with low counts.

In short, it's a process - but there's always light at the end of the tunnel. Stay positive!

Kyndig, Ha ha, that's an important part of the equation (being the father)!

As Matthew says, it takes time to get stabilized. Some people get lucky and find the right treatment right away, others can take a bit longer. It took most of us about a year (average) to get stabilized and to feel normal. You have to try to find the treatment that has the least side effects for you, one that works and one that you can afford. For most of us, Prednisone is not it! IVIG is too temporary. There are other options though. Read as much as you can and learn. It's important to be an active part of the decisions.

There is part of the frustration. I probably read to much... And not enough from pubmed. I have a lot of time at the moment... Can't do my job with 30k platelets. I'm a veterinarian... Large animal to be precise. Lots of danger being kicked by a cow with low platlets. So I sit at home and read. Most of our "treatments" hijacked drugs from cancer research. No funding or interest in ITP because of the limited number of patients.

That being said, thank you for the responses. it helps.

Ooh can't agree with that. There's a fair bit of research being done into ITP with two new drugs come on the market since I was diagnosed in 2006. One of them, Nplate, I used for three years, firstly on a trial and then normally, which has put me into a sort of partial remission. Counts now in the 80s with no treatment. There are other drugs at the trial stage too.

I've also given blood several times for research purposes, 10 vials full a couple of times. And also given blood to the UK ITP Registry for research. There's also been some research taken place to attempt to see if there's a connection with food allergy and ITP and also some research done which supports the theory that fatigue really is a symptom of ITP. This just small stuff that I've been involved in in the UK. Plenty happening elsewhere too.

Also one cancer drug, Rituximab has been trialled for use at a lower dose and shown to be just as effective as the higher cancer dose, although it appears to have been ignored by many doctors who just trundle on using the same old dose as they always have.

They have also learnt in the last few years that ITP is a disorder not only of accelerated platelet destruction but also of inadequate platelet production. And that there are two sorts of ITP, antibody mediated and cytotoxic T-cell mediated. They also have some idea of which treatments work for which sort. This is all new stuff and it's very exciting to see.

By the way you can never read too much. Just be selective about the sites you read from.

I agree with Ann. I was diagnosed in 1998 and things have changed dramatically since then. There are so many more options now and so much has been discovered about the disorder. Much of the advancement was because of the PDSA and how much it does to raise awareness and raise funds. There is more research going on now than there has ever been.

Many autoimmune disorders 'borrow' treatments from other illnesses. Very few disorders have treatments that are specifically designed for them. ITP has N-Plate and Promacta which were huge as far as ITP is concerned. ITP is considered to be a fairly benign disorder that isn't particularly debilitating nor is it often fatal, so no, it's not on the top of the cure list. Most people can live fairly normal lives in spite of having ITP, although you are restricted for now due to your occupation.

It does get better. Most of us have been where you are now and believe me, it doesn't stay that way. Reading and learning is the only way that you will know what is available and then you can be a part of the decision-making on your own behalf. Advocating for yourself is the only way to get yourself to the point where you'd like to be. Once patients start doing that, they feel that they have more control over the situation.

This is a very good, credible website: www.bloodjournal.org

Reading will not only help you learn about ITP and the different treatments, it will also help you learn about to deal with it - a lot of that comes from this website and the people active here.

Here are some links for other good reads (if you haven't read them already):

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

pdsa.org/forum-sp-534/6-general-itp-discussion/16141-new-articles-posted-here-update-10-19-14.html

Just saying hello and sorry we have to welcome you to the club.

That said I was diagnosed at 29 (47 now) and have had my ups and downs with ITP. In the beginning very scary but now I call it a pain in my butt. Some respond to treatments immediately and others will struggle with finding the right one!

Most importantly it take a little patience!

Again.... Thank you for the welcome. I'm combative by nature because as a veterinarian I want to solve problems. Not actually attacking anyone personally. I hope.

As for Rituximab... Again a hijacked drug... Designed for cancer that was used and just now we are looking at dosage. Btw the European Union medical field is pushing to remove splenectomy as treatment option until last resort. N-plate and Promacta were are great successes, but long term nobody knows what the bone marrow fibrosis side effects will mean. Just thoughts

My recent wonderings are the generalized short term success of IVIG versus rituximab. Rituximab has a major effect on B cells with a modulation on T cells ( won't get into receptors and all that). IVIG are immunoglobulins. Their primary function is identifying bad things... Virus/bacteria. They also affect T cells over B cells. I would argue a greater push to identify infective issues that we/our immune systems are unable to identify.

Curious if anyone has tried SMZ or doxycycline in the course of treatments?

Like I said I read a lot and am not good with patience.

Not allowed to work till platlets are above 50k... So read all day (blood journal is part of pubmed) so I am gaining an understanding of it. Hit a table edge and have a bruise the size of my hand. Can't imagine what a 750lbs boar would do if we got in a tussle, but I miss that.

Kyndig:

Just a thought - you're right, no one knows the true long term effects of N-Plate or Promacta, but it seems to me that treatments for every disorder/disease have possible long-term side effects. No drugs are 100% safe. Patients can have bad reactions to antibiotics that can be permanent. For now, it's all we've got.

So far, studies have shown that bone marrow fibrosis reverses when the drug is stopped. Most people do very well with the TPO's.

Curious if anyone has tried SMZ or doxycycline in the course of treatments?

Are you curious about these drugs as treatments for ITP, or whether it is safe to use them while being treated for ITP?

By SMZ I assume you mean Sulfamethoxazole, and it can cause drug-induced thrombocytopenia, but that is one of those rare responses. Doxycycline is not known to have that effect.

I suspect that you, as a vet, are thinking about antibiotics being used in animals to treat tick-borne diseases which can cause ITP. I know there are some on this site who have tested positive for Lymes disease, and maybe babesiosis. And I hope they might be able to comment here. I would guess that your work with large animals exposes you to ticks, especially if you are in certain parts of the US.

The other condition that can cause ITP and responds to antibiotics is H-Pylori. A few here have tested positive, and some of them have had very positive results in their platelet counts, while others have not.

I've taken the sulfamethoxazole and trimethoprim combination ie. Septrin at low dose daily for a year now. I take it as antibiotic cover for a primary immune deficiency. I don't believe it has affected my platelet count although it's impossible to know for sure of course. Interestingly, I had an allergic type rash to Septrin years ago when I took it, but that hasn't shown up this time around. Same with penicillin, I had an allergic reaction to that once but was negative on allergy testing. It seems that allergies are not always permanent.

Maybe allergies are not always permanent - but boy I sure don't want to be given penicillin again to find out, that was hell!! My niece was told if she had penicillin again it could kill her - she too had serum sickness to it.

Kyndig the drug of choice for me when I have a sinus infection is doxycycline, never has done anything for my count. [your son is darling]

Just an FYI - I posted information in the Announcements about a new, current ITP study being conducted in the US, Canada and parts of Europe. More research going on...anything we can get is wonderful!

Thanks again for responses... Nice to not be alone. And Melinda... Thank you. He is awesome. I missed some early thing curled up on pred. No plans to go back on that.

Rob... Correct early I suspected tick bourne diseases, but have tested negative for those issues. What I was getting at was GI related issues. Early I thought E. coli or salmonella (common in my work), but read some on intestinal yeast (candidiia) infection.

Sandi thanks for the updated. I'm all in when it comes to trials

Actually did some research work with H pylori.... Either we are very paranoid or there are so many things we haven't discovered yet

I suspect it's the latter.

I would agree. But it's thanksgiving ... Or soon to be. Platlets at 53k... Cooking starts in 7 hours.

New son... Well slightly worn at almost 8 months. Lots to be thankful for. Enjoy all!

I'm with you Kyndig. I am recently diagnosed, 35, have a 3 1/2 y/o daughter and a 2 y/o son. I have tried prednisone and rituximab. Both have seemed to help, but so far (only a few months in) nothing seems to stick. I am frustrated and angry. I am accustomed to solving problems and other people's problems at that. That's what lawyer moms do (and veterinarian dads I suppose!). Glad you vented. Glad you were able to still be thankful on Thanksgiving. Some days I forget that I have this. Not often. Those are nice days though. Good luck.

I think we've all felt that way for the first year or so. I can honestly say that in time, ITP becomes just a pain in the butt. Even the most frightened or frustrated people eventually get to that point. Something comes along and changes your perspective, then you change. There are worse illnesses out there, and those stories always got to me.

Thanks to you both melissumd and sandi. Agree when it comes to problem solving... That's my job or near enough. Although I might be to bullheaded to ever change. Brick walls don't stand a chance... Head is to hard.

I would imagine though that must you run into situations where you can't save an animal or fix a medical problem. Having that happen, you must know that not all medical problems can be fixed all the time. I had a dog with Cushing's Disease and that was a very frustrating one to treat. Even with proper medication, her symptoms were bad for both us and her. She lived with it for three years before she died. Dogs can also get ITP and all they get is Prednisone. My friend's dog died of Lupus, you can't treat dogs successfully for that. I think animals have it worse than we do!

Maybe farm animals are different in that you either fix them or put them down. That way, the problem is solved.

Most people struggle with loss of control at the beginning. Once they learn all they can and make treatment suggestions, they gain some of that control and things get better.

I have Lyme and Babesia. My platelets went up with Doxycycline from 65 to 90 which was the highest they'd been in years but after a month they slipped back to their resting 65ish.

I chatted with someone else with itp in a lyme group who was in the 100's and then quickly crashed to 20 after taking doxycycline.



Be aware that Lyme tests are really poor quality and are frequently inaccurate. The coinfections that tend to come along with Lyme are also very difficult to accurately test for. Don't rule it out as a possibility if you have a negative test result or if you don't remember being bitten by a tick.

The western blot test that they use to test for lyme tests for at least 13 different antibodies that your body could produce to fight lyme. If you want to look into your results further you can review your medical record and see how many bands were possibly positive. They will only tell you that you test positive for Lyme if you have 5 bands/antibodies positive. Some people can be ill for years and only get four bands positive and will still be told they're negative. Meanwhile that testing guideline is totally arbitrary. There's no evidence that people produce the same specific amount of antibodies to fight lyme.



I don't think ITP automatically means lyme but it is something that should be considered especially if you continue to have a constant stream of unexplained health issues.


Here are some resources for finding a local Lyme Literate MD.

Each state has a lyme yahoo group. Type Lyme and your state in the yahoo group search bar.
groups.yahoo.com/neo/dir/1600106012

These are two helpful organizations that will send you Dr.'s names in your area.
ilads.org/ilads_media/physician-referral/

tbdalliance.org/treatment/find-a-medical-professional

This is an active online Lyme discussion group. They have a special sections specifically for asking for Dr.'s contact info.

flash.lymenet.org/scripts/ultimatebb.cgi

I appreciate the input. And yes I admit there are times where I have not saved an animal, but that is not due to there not being an answer. We might not know it yet, it might have been I acted to late. A live and let live approach might make us comfortable with ITP, but what about future Individuals that get it? Have to work to stop that.

Recently did some reading in Asian journals on streptococcus suis and thrombocytopenia... Work with a lot of pigs. So tracking more on that. The main thing is to not let your mind rest, but to use it...

m.youtube.com/watch?v=UfjRcGDBvMQ

Lastly please never suggest that we euthanize animals... Farm or not out of hand to have resolution. Euthanasia is never something I am proud to do, but occasionally it is part of my job. Veterinarians can't always obtain the billions needed to research an animal disease and our work it difficult occasionally as a result, but I will promise you that I take each death very personally ... From a kids kitten that is put down, to an old mans dog, to a pig of any age on my farms. They were all in my care and it failed. I wake up the next day trying to never fail again.

I understand. Euthanizing my animals was one of the hardest decisions I've ever had to make. I did not say that lightly. I'm just saying that having animals, I know that they can and do have problems that cannot be fixed, only managed, just like us. You can't take an animal's death personally; it's just part of life. It's nice that you care so much about your patients. Sometimes though, they can't be saved. My Mom's cat just died after a short six week illness that came on suddenly. The vet couldn't figure out what was wrong, at least not without thousands of dollars of tests. Even if she got a diagnosis, it would have cost too much to treat her. Some sort of cancer, he thinks. And as I said above, my son's friends dog died of Lupus. Dogs with Lupus live about a year after diagnosis. It can't be treated.

ITP is hard to solve because the trigger seems to be different for everyone. There are different types of antibodies and they affect us all differently. Most autoimmune disorders have no cure and the treatments leave much to be desired. I agree that autoimmune disorders need more attention; they are not understood by the general population and some of them can be devastating.