TOPIC:

Hi Hal,

In 2011 when things went south, I started with a very strict diet. It was gluten, caffeine, alcohol and sugar free. It helped to make big changes in my health (eg. cholesterol dropped by half) but did not really influence my platelet counts during the 9 months I did it. Regarding gluten, I had no idea I had an intolerance to it. Within two weeks of eliminating gluten, the feeling in my gut and back was one of tremendous relief. I could never figure out why my back muscles were always so tight. It was due to the inflammation in my gut. I had been that way for years not knowing it. So although gluten elimination itself did not effect a noticeable change in my platelets at the time, I know that it was bothering my immune system in a big way. All that inflammation was not a good thing.

I then tried to figure out if there were other foods or allergens bothering me. I never thought I had any allergies to speak of, although I knew was very allergic to penicillin. Turns out dust is really bad for me as well as dust mites (carpets etc). So now we have wood floors and shutters. No carpets or drapes to collect dust etc. Another allergen I've always known about was chlorine (and bromine). And I learned that I am very allergic to things like juniper (so I don't trim these bushes in our garden anymore). Dealing with all these possible allergens helped me, but I still struggled with my ITP for some time.

I went on and tried Reiki. Never heard of it before. It helped me as I was able to finally taper off prednisone (was on it for 9 months) with Reiki treatments. Then I had a very bad virus and a terrific relapse and was really desperate. Finally I said what the heck let's give homeopathy a try. And with the right remedy, bingo that changed things dramatically and I have never looked back.

I think all the things I pursued were important. For example homeopathy may have not worked for me or perhaps we did not find the right remedy? Then what? All the other efforts were still important and worth doing and would help me manage the ITP for the better. The big take away here Hal is that it takes time, lots of time for your immune system to right itself. GL.

cheers,
john


NB I should add that I eliminated as many stressors in my life as possible. For example I once traded the markets fairly actively and now do less of it. And probiotics are important (for gut health) as there are studies now that show stress affects gut flora and can be mitigated with probiotics.

Hi John
I'm so glad that you are OK and did find a solution to your ITP

I have also consulted a homeopath and he mentions that his medicines would take time to effect

He also suggested I do both allopathy and homeopathy.

However he seemed confident.

I also plan to take my son for various tests for allergies.

Lets see what comes up.

I'm not very enthused with the side effects of prednisones and promactas.and actually feel very helpless with the situation.

All righty. Thanks for the explanation.

I've certainly read stories from others here on PDSA that have attributed their ITP to allergies. 'KO27' comes to mind. Do you suppose the number of folks like that is not insignificant? Twenty percent maybe?

Another item. If I'm reading your comments right, you respond well to steroids? A count of 250 on them? Even responding to steroids as well as IVIG - both give you a count of 250?

I wonder if there is a correlation between allergy cause and steroid response. In your reading of stories here on PDSA, do you think it is possible that allergy sufferer's respond well to steroids natively?

On the other hand, I don't seem to be allergic to anything but dust and have a poor, almost nonexistent, response to steroids.

What do you think?

Hi Hal9000,
I also believe I responded to a dietary intervention, but it wasn't an allergy. I've told my story here before. If like me, you, or anyone, has chronic IBS along with auto immune diseases, maybe what worked for me might work for you.

I had awful IBS for most of my life since childhood, alternating D and C. It wasn't until I was in my 40s that I worked out that I had fructose malabsorption and I changed to a low FODMAP diet. My life was changed - really - I was no longer planning my days around where I could find a bathroom. It was a huge deal. Plus, my platelets stopped dropping. I believe that the chronic inflammation of my intestines was causing lupus flares. I can't prove it and my remission also coincides with Rituxan. But if you suffer with IBS and ITP it is well worth trying to clear up the IBS, maybe with the low FODMAP diet, and see if it helps.

I also avoid wheat but not because of gluten in fact I eat gluten fake meat. Wheat has fructans which is a FODMAP (a type of short chain carbohydrate that some can't digest well or at all) and along with onions turned out to be my main dietary triggers.

So food can be part of the problem even if it isn't an allergy sometimes.
Erica

Erica, I've seen your fructose malabsorption association in my PDSA travails. I don't dismiss foods at all. Look at it in a different way.

Is there any wonder that doctors can't accurately predict Rituxin success if they aren't measuring, for example, patient 'fatigue'? How about stress? How about patient itching, or the believed cause of ITP, or fructose malabsorption? How long is this list? Best I can tell, none of this is considered - may even be actively dismissed.

Imagine this hypothetical. What if one went in for ITP treatment and doctor said 'you respond well to steroids, may want to look into food allergies or fructose malabsorption'. Would that be helpful to the patient? I think so.

Or, how about this hypothetical. Doctor says 'you don't respond to steroids and complain of itching. We may need to test you for h-Pylori. If we move on to Rituxan it isn't going to work if h-Pylori is still there'.

I wonder if these sorts of implications could be accurately defined if 'evidence based medicine' was better applied in ITP treatments.

What do you think?

Hal9000 wrote:

Imagine this hypothetical. What if one went in for ITP treatment and doctor said 'you respond well to steroids, may want to look into food allergies or fructose malabsorption'. Would that be helpful to the patient? I think so.

wait a minute?
are you saying that response to prednisone, (which i do respond well to pred), may indicate food allergies?

Hal9000,
Yes I believe seeing patterns in health is really important and with doctors so specialized they can easily miss important patterns. The patterns cross specialized systems - gut problems, skin problems, aches and pains. And seeing those patterns can also give clues as to what treatments are likely to be effective.

Sometimes we spot patterns here. For example, it seems like lupus patients are having more reactions to Rituxan. But we are also getting ITP remissions from Rituxan. My reaction was limited to a week of awful hives, but then we also see serious serum sickness reactions like Sandi has had to suffer.
Erica

rhoda, I dunno. Based on John's experience the answer seems to be likely. Need some scientific evidence. Is it worth taking the time to create a long questionnaire to know the answer?

Erica, yes, those that have actually taken these treatments will never forget their experiences. Never. Doctor's, maybe yes, maybe no. Plus, doctors are working off of second hand information - patient reports. I know this sounds cynical, but I think doctors often degenerate into drug pushers.

I've never taken Rituxan so I'm not well equipped to consider direct linkages to possible related issues / symptoms. LOL, but there are folks here that are !

Just thinking out loud. Is it possible that previous rheumatoid arthritis like symptoms are a predictor of poor Rituxan experiences?

Need some brainstorming...

The trouble is that each speciality becomes so isolated from the others.

When I started nursing back in the 70's we were, for want of a better term, 'jack of all trades'.

I'm sure it applies to doctors as well. GPs know a little bit about everything and refer on to a particular speciality asap.

In the UK we are all specialists in our fields, no such thing as a general nurse anymore. I know lots and lots about nephrology but am limited in my knowledge regarding many many other specialisms such as ITP when it hit me.

One of the things I really find beneficial about this site is the anecdotal evidence members provide then I go off and research it.

Another thing that has to be taken into account is the fact that patients are so quick to jump on the litigation band wagon these days that health professionals are continually covering their own backs to avoid being sued.

mrsb, I think I get what your saying. Let me try to challenge it a bit. Is ITP really common enough of a disease for even a hematologist specialist to see a lot of ITP patients? Worse yet, isn't the immune system and ITP poorly understood in comparison to other organs and their diseases? It seems like ITP is as complicated as cancer but nowhere nearly as well studied.

Hal it maybe so.

I've just done a quick search for ITP articles in the last 10 years on Haematologica 140 article and Blood journal 1124 article so the research is out there.

I suppose another factor we need to take into consideration is each person's immune system is unique to them and therefore probably reacts differently to treatments

We are on the cusp of having AI do the research for us and recommend treatments. It's already happening with cancer.

www.mskcc.org/about/innovative-collaborations/watson-oncology

www.cbsnews.com/news/artificial-intelligence-making-a-difference-in-cancer-care/

tamar, I saw that 60 minutes segment. As I recall, one of the praises of the Watson system is for it to know the latest treatment philosophies - as a sort of repository. LOL, now if it can only suggest topics of new studies.

Hi friends
Just got the cbc done
His platelets are down from 300000+
To
88000

Doc has now asked us to increase. The prednisone dosage to 25mg again.

He is now suggesting that we should give revolade 50mg every alternate day (instead of everyday)

And continue with mycophenolate

Very confused

ALSO GOT THE H PYLORI TEST DONE WHICH IS+VE
(WONDER IF THIS HAS CAUSED ITP)
Have a app. With a gastro on sat for this.



Have also taken a appointment to meet a haematologist for Tuesday.
This for a 2nd opinion

Pl suggest what next

Hello Badami

It's 5am in the UK I've been up for an hour watching the test match from Mumbai.

it is quite likely that H Pylori is the cause ..these might be of use. When was he investigated for this because it really should have been at the onset of his ITP?

www.ncbi.nlm.nih.gov/pmc/articles/PMC3921481/
www.sciencedirect.com/science/article/pii/S1516848414500424

Really glad you have a haematology opinion booked, hopefully treating the HP will be addressed plus the current cocktail of drugs he is on.

Anne

This is a very broad topic. The easiest thing anyone can do with any disease is to eat healthy.

I have only had ITP for a little over a month. Nearly four years ago, I went gluten free to see if my energy would improve. I had two celiac family members so I was partially gluten free (GF) already but ate a good amount daily. My Fatigue resolved, my mood improved and joint pains that I thought were part of getting older went away. I now wonder if I avoided a RA or lupus diagnosis. Gluten is very proinflammatory, even for non celiacs.

Food, and whatever is riding on/in it (chemicals, pestasides, pollen, germs-good and bad) is the primary thing that interacts with our body every day. The vast variety of food and fake food (processed calories) interact with our microbiome (or our gut plus bacteria.) Our gut is where most of our immune system lives. Seeing a functional medicine doc, (can be googled), can be really helpful to address these issues.

For years, I have thought I have an issue with dairy. As a KID on my own, I gave up drinking milk due to horrible sinus congestion. I have now been off of it now for over a month and hardly miss it. Dairy is also proinflammatory and more and more scientists are questioning why we would eat/drink it.

I am really interested in reducing my immune triggers whether they be allergy, stress, food, chemicals, etc.

RiseAbove,

Something I never discussed in my ITP experience occurred in 2011. I would get this incredible cramping in my hands and feet. It got so bad that it stopped me from doing menial tasks. There were times I had to stop the car and get out because my feet cramped with intense pain. I can't prove what the real cause was. But I can only speculate, and yes that is the right word speculate, that I was perhaps low in some essential vitamins. It took a long period of time for this to pass. I actually thought I was developing rheumatoid arthritis or some other autoimmune condition beyond my ITP.

In retrospect, I don't think it was anything I was eating other than gluten, which I think was the culprit. Does gluten interfere with my ability to absorb vitamins, particularly magnesium? I probably won't know for years until studies might prove it. But my elimination of gluten and a focus on consuming high magnesium containing foods did the trick. I have a list of these foods on my fridge as a reminder. Fortunately I eat and enjoy most everything on that list.

We share, we learn. That is why we are here.

cheers,
john

That sounds unusual John. Many years ago when I was on Atkins diet I had extreme muscle cramps. But the cramps weren't limited to just hands and feet and they often occurred while lying in bed.

I got bad foot and leg cramps really bad when my ITP was really bad. I thought it was connected to taking prednisone but not sure. I got on prescription potassium. That might have helped. Erica

hi

in the blood test Hpylory was +ve
Doctor advised a UBT


did the UBT (urea breath test) for H pylory

but was negative
so nothing there

im also going to get the tests done for food allergies

dont know what else to do as my sons platelets are not stabilizing at all


Badami

Look at it this way Badami,

As long as he doesn't have h-Pylori, 1) h-Pylori can't prevent him from going into remission one day soon, 2) you can rule h-Pylori out as a reason for a possible relapse in the future.

Allergy testing? Does your son have any known allergies currently?

In the blood test it showed h pylori +ve

So was advised a UBT
That was negative.

He does not have any allergies currently but was tryin to rule out any.

Was wondering if he has any allergies that we are not aware of and that could be causing ITP.

Just a thought though

Sadly not getting a med fix that could keep the platelets counts steady.

Ok, right. ITP diagnoses is currently a method of exclusion...

Hi! Badami,

I saw your post and I would like to believe that alternative medicine works. However, one needs to be patient and give it time. I am based in Delhi, my husband was diagnosed with ITP beginning August. His counts were really low on several occasions. He went through corticosteroids, Ivig, back to corticosteroids, revolade and dapsone. Typically his count would climb up for a few days and then crash to a real low.
We chanced to meet an Ayurvedic Doc based in Mumbai. He is a specialist in ITP and the scenario has been as below -

8th October - 5000
10th October - Started Ayurvedic medicines
16th October - 24,000
23rd October - 2,38,700
5th November - 70,000
18th November - 65,000
10th December - 32,000

The trend shows the platelet count going down, however my belief is that this is long term thing and will take time to stabilize. Also, the pattern of counts in the first two months with the other medicines was horrific. So really hopeful on this one!!

Hi Sushigrand

Nice to hear from you.
I live in Mumbai
Would.love to consult your doc for the alternative medicine.
Pl do share his tel no.
I'm in Mumbai as said earlier.
If you need to contact me Pl e mail me
badamimunnawar@gmail.com

Regards
Badami