New to ITP, holistic alternative medicine approach

Hello all,
I'm sorry to see so many people here with ITP; but also grateful to have so much information at my finger tips.
I was diagnosed in December 2016 with chronic ITP. I actually thought I had the flu or was dehydrated. After being admitted to the hospital and given transfusions as well as a bone marrow biopsy the results were ITP.
I was put a very high dose of prednisone, given IVIG (3 rounds so far), 4 weeks of rituxim, promacta, and dexamethasone.
Prednisone didn't work, IVIG keeps me at a safe level for about 30 days with a consistent decline, rituxim and promacta didn't help at all, dexamethasone is a horrible drug to take.. it did boost me to a safe level but I drop back to critical numbers within 2 weeks.

So now I'm looking at splenectomy. I really want surgery to be my last resort.

I've read a little about essential oils, has anyone here tried them? I would be very interested in any alternative routes or holistic doctor experiences anyone has to share.

Thank you

Be wary of essential oils some, like Rosemary, are salicylates, related to aspirin, which destroys platelets.

Welcome Fitzx123,

I also find the folks here to be quite helpful and a wealth of information on ITP. I'm sorry to hear that you've had everything but the kitchen sink thrown at you in such a short time. It would be useful to know what your counts are now and what your symptoms are. How long did you try Promacta? That one can take a little bit to kick in and there is a bit of delay between the time you adjust your dose to the time you might see the effect in your counts. What is the highest dose that you took before it was decided that it wasn't helping? Did you ever try NPlate? Some people respond to NPlate when Promacta doesn't work. Did you ever try anything like Mycophenolate Mofetil? Cyclosporin? Danazol? There are some other treatments out there that you might want to try before throwing in the towel and going for surgery. The main thing is the symptoms. Some people have had quite low counts, but without symptoms, and have been able to avoid invasive treatments as long as they stay asymptomatic.

I personally had a splenectomy as a child and am still fighting with my ITP in my 40s (currently treating with Promacta and lately having counts around 20), so there are no guarantees

Regarding your question about essential oils, I have no idea about that. Maybe others have dabbled with them. Margaret that is really interesting about the rosemary oil, thanks! I have a hand soap in one of my bathrooms that contains rosemary essential oil that maybe I should swap out. Every little thing is worth considering

Good luck in managing your condition! Feel free to post your questions and experienced forum members like Sandi and Rob (who have been around for years reading questions and treatment stories) might have thoughts as well.

Thank you so much for responding.

I think I will ask about Nplate this week. My doctor seems to think surgery is the answer to being medication free.
I've been on promacta for a month, the doc seems to have given up on it. I have my counts done twice a week now. After my last round of steroids I was at 190, ten days later I was as 65. I can tell I'm dropping again, I get this weird sensation behind my ears, my knees are sore and a general fatigue sets in at the end of the day. Also the petechiae rash develops.

Thanks for listing the other meds. I`ll start researching them as well.

I didn't know that about Rosemary, I don't use it as an oil but do use in cooking. The oils recommended to me were, thieves, immupower, excuse ll, and rehemogen. Are these considered salicylates?

Thanks for the info. I really appreciate It!

Hi Fitz. Glad you found us. Salicylates (aspirin) do not destroy platelets, but they do prevent platelets from sticking and forming clots. That isn't good when counts are down.

A splenectomy is not a guarantee for a med-free life. Splenectomies are often unsuccessful and are not even performed much for ITP any more. It's an old-school way of thinking as a treatment for ITP.

Any treatment that causes counts to rise is a treatment that 'works'. Sometimes people believe that if counts do not stay up then the treatment didn't work. It did, it just didn't cause remission. That can take time to achieve and sometimes it never happens. In that case, you have to go with a treatment that will allow you to maintain a safe count (around 30k to 50k). N-Plate and Promacta usually work well for that but it can take time. How have your counts been on Promacta and what dose are you on?

Hi Sandi
So far it doesn't look like promacta is effecting my counts at all. I've been taking 50mg daily for a month and had to take dexamethsone twice (40 mg 4 days) to raise my counts to a safe level. So my last dose of dexamethsone was on 3/26 my count was 190, 3 days later 165, a week later 65, i'll be tested again this Tuesday probably will be below 30 which is the point my doc will want me to take the dexamethsone again. This week I feel I need to refuse it and ask for the ivig infusions (privigen) . It seems to last longer without all the crazy side effects of the steroid.

Fitzx123 wrote: Hi Sandi
So far it doesn't look like promacta is effecting my counts at all. I've been taking 50mg daily for a month and had to take dexamethsone twice (40 mg 4 days) to raise my counts to a safe level. So my last dose of dexamethsone was on 3/26 my count was 190, 3 days later 165, a week later 65, i'll be tested again this Tuesday probably will be below 30 which is the point my doc will want me to take the dexamethsone again. This week I feel I need to refuse it and ask for the ivig infusions (privigen) . It seems to last longer without all the crazy side effects of the steroid.

That doesn't sound like your doctor has given promacta enough of a try. It took me longer than 4-5 weeks to get my first response to the drug, and I really didn't show much response until my dosage was increased to 75mg. Just doing 4 weeks at 50mg is not enough to call it quits by any stretch. In general even if you change the dosage now, it can take 2-3 weeks for you to see an increase in your counts that reflect the change in dose. It's not a speedy fix so don't give up too quickly!

The dex sounds like a nightmare, I'm sorry that they keep throwing that at you. You have an amazing response if you spike right up to the 190s! There is plenty of hope for something to get you to safe counts. And by safe counts, I really mean anything 30 or above. Definitely don't shoot for 150

Good luck managing your treatment, and maybe a second opinion is an option if you have an old school doctor who is pushing splenectomy without trying all of the other options.

Dex pulses while on Promacta. Oh, I'm liking this doctor even if he is mentioning splenectomy.

I like Mom's original idea of NPlate and I'm a little surprised the doc hasn't taken this route on his own. It would be reasonable to think that you will respond to NPlate given the good responses to another drug, eg the Dex pulses. Then with a response to NPlate, that will get you off another Dex pulse.

Good luck.

Well....I'm not so keen about using Dex with Promacta. Your counts are going too high while using a TPO which puts you at risk for blood clots. It's okay to have counts below 30k if symptoms are not too bad. Of course you want to try to avoid single digits but shooting counts up can be just as dangerous.

Sorry maybe destroy was not the right word but aspirin renders platelets ineffective for the whole of their 9 / 10 day life not just for the day you take the aspirin. I was unaware of the fact that Rosemary oil was a salicylate and used a neck rub containing it for some time time in 2014/15 and interestingly had a big dip in my counts around then. It also kept me awake at night as it is a stimulant.