Im new here and am 79 years old. Diagnosed with ITP about 27 years. Was treated with mostly IGIV as steroids and rixtuximab gave severe side effects so had to stop. I have been on revolade for approx two years. I am on the minimum dose of 25mg a day and my platelets are now above 150. However, I feel that revolade is causing me anxiety, muscle and joint pain and fatigue. My consultant is trying to reduce the dose but I get a feeling that I will have to come off it as I feel rather unwell. Does anybody know what else they may offer ? Are there any herbal remedies that anyone has tried? Any help would be appreciated. Many thanks.
Im new here: Im new here and am 7... - ITP Support Assoc...
Im new here
Hey I live in the states & I’ve had ITP for 15yrs. I got diagnosed with 3000 platelets.I did all the regular treatments, with short term success, but soon falling again. About 4rys ago I started Nplate & that has stabilized my platelets.
They now range between 70 to 100. I also just got fully (Covid)vaccinated & my platelets went up to 116,000! Have you tried Nplate?
You may find the following video helpful as it goes through all of the up to date ITP treatment options - youtu.be/lcC329pd-fY
In respect of herbal/alternative medicines sadly there are none that are proven to raise the platelet count.
It definitely helps to eat a balanced diet, especially having plenty of fresh vegetables and fruit , cut down on meat consumption and any fast foods/ready meals, reduce sugar, fat, salt and keep well hydrated. All these things help to keep our immune systems in good health.
Another useful thing to consider is taking a Vitamin D supplement. Here is some background on Vitamin D but keep in mind this is for the UK - nhs.uk/conditions/vitamins-...
I am on Nplate works great. Platelets holding up around 100 plus. Had to tweak my dose abit but ok. Recommend it.
I find papaya leaf juice capsules helpful as have others on this platform. However a after reading this on healthunlocked a recent rise to 92 may be the result of the double COVID shots (Phiser).
I hope not, but maybe over time you have developed another autoimmune disorder, that’s what happened to me, maybe get that checked out