Hi, Moondance.
The short answer is not yet, but I'm still working on it.
Here are the highlights of what I learned so far:
1. My rash was not hives, but Sweet's Syndrome.
NPlate worked for me for about 13 months. Then my counts started dropping and I developed rashes after each weekly shot. The rashes were not hives, but rather individual dark red, very itchy smooth spots that formed on my arms and legs. The spots gradually developed a pus-filled center that looked like it was from an insect bite, then gradually faded away after several weeks without leaving scars.
Doctors to whom I showed the rash could not diagnose it. I finally found online research that identified the rash as Sweet's Syndrome. Sweet's Syndrome is normally a side effect of blood cancers, but I didn't have cancer. However, the spots did respond to the treatment recommended by sufferers of Sweet's Syndrome online: selenium and potassium iodide supplements.
2. My rash was caused by salicylate sensitivity, possibly based on a genetic susceptibility triggered by taking NPlate.
NPLate carries a warning to stop taking it if you develop a rash. I ignored the warning because I wanted it to keep working. But after I started developing the rashes, my platelets never again rose above 5 on NPlate.
I also noticed that certain foods I was formerly able to eat now triggered the rash even after I stopped NPlate. These included coconut oil, tomatoes, and strawberries.
After doing more research online, I learned that what these foods all have in common is that they are naturally high in salicylates. This is the main ingredient in aspirin that people with ITP need to avoid because it can trigger bleeding.
I also discovered that there is something called salicylate sensitivity that a number of people have, although the condition is relatively unknown in the U.S. and Canadian medical communities. However, there are a number of discussion groups online for people with salicylate sensitivity, the largest of which is the Salicylate Sensitivity Forum at salicylatesensitivity.com. The leading medical research on this problem comes from the Royal Albert Hospital in Australia.
What I've learned from this group is that salicylate sensitivity is an intolerance, not an allergy. In some people, salicylates are not excreted properly from their bodies and cause symptoms when they build up to high levels. You can still eat some foods containing sals if your limit your exposure to them, because it is not a food allergy reaction.
There is no blood test to diagnose salicylate sensitivity. You diagnose it by going on a sals elimination diet for several weeks and seeing if your symptoms go away. Then you add foods back one at a time to see which ones are safe and which ones you need to avoid. But you need to keep your intake of sals to a relatively low level overall as long as the sensitivity is active.
3. My salicylate sensitivity may indicate that my ITP is related to varying levels of activity (overactivity in some areas, and underactivity in others) in different parts of my immune system.
No one is sure of the causes of salicylate sensitivity, but it seems that people in the discussion groups tend to have MTHFR gene mutations, and are of Irish or Celtic ancestry (hence the Australian connection, since many Australians are the descendents of Irish prisoners). Genetic testing confirmed I have both conditions.
One Salicylate Sensitivity Forum member who was a pharmacy student speculated that the underlying cause of the problem may be a lack of prostaglandins, inflammatory chemicals produced by part of the immune system. The lack of sufficient amounts of prostaglandins may somehow prevent people from properly processing salicylates in food. Some people in the group have been able to overcome the condition with diet and supplements. I still haven't figured out how to recover from it myself, but it's good to see that it is possible to do so.
4. Rashes that look like histamine intolerance may have other causes.
Although I originally thought my problem was histamine intolerance, I lack most of the symptoms of that syndrome. If you want to see if you have that, check out the website of the Low Histamine Chef. She has the most valuable online information about that topic. This is another condition that has not yet been studied by more than a handful of North American doctors.
5. Chronic low-level infections may play a role in causing my ITP:
Last fall, I developed Haemophilus Influenzae B, which is a bacterial infection and not a virus, following a visit to the dentist which caused a lot of gum bleeding due to my platelet count being less than 5. The infection caused muscle aches, small seizures, and I ended up in the hospital for 3 days with a small brain bleed. I was treated with antibiotics and the three-drug ITP regimen (Dexamethosone pulse, Rituxan, and Cyclosporine), plus an alternative antibacterial treatment using UVA light.
Then in February, I developed what seemed to be a major viral infection and developed pink eye. When cultured, the eye infection was also Haemophilus Influenzae B. This time, instead of my platelet counts collapsing, they shot up to 74 without any treatments other than antibacterial eyedrops, UVA light, and being very careful with my diet.
The lesson I took from this latter experience is that my bone marrow is working fine, but some area of my immune system is destroying the platelets I produce.
So this research is a work in progress. Hope I haven't overwhelmed you with all this detail. But I'm sharing it in the hope that some of you who have similar symptoms might find this information helpful.
I have started a discussion on the PDSA site related to Methylation and ITP. Please join that discussion if you would like to continue looking at these issues.
Best regards,
Cathy
Topic Author
skin patches that are red raised and itchy on my upper arms and legs a on my trunk as well. Does anyone know if this is another ITP problem or possiblably caused by some of the medication?
