Hi all, I haven’t been to the doctor yet so I don’t have a personal update but I just had a light bulb moment when thinking about heading into the dermatologist’s office to get evaluated for another autoimmune disease called HS or Hidradenitis Suppurativa. I was sent an informational pamphlet by Abbvie, the company that makes Humira (adalimumab) because I requested it as I suspect I have it. The condition itself is an inflammatory skin condition and from what I gather, I have dealt with mild symptoms of HS for at least a few years. Obviously I want to follow up with a derma about it but I was reading in the pamphlet that the condition is caused by too much TNF-alpha that leads to inflammation. So I google ITP and TNF-Alpha and I find a couple of articles talking about how this TNF-alpha is elevated in many ITP patients! I’m going to inform my doctor of this as it may shine a light on some part of what can work for me..? I’m not sure but I’m hoping it can help! Does anyone here have HS as well as ITP? I know it’s a long shot but maybe there’s someone here who knows more about the correlation of the two! Thanks in advance!
Carcamoc- I can't help you with any info on HS but wanted to respond to your post. Thankfully HS is rare, it looks very painful, really bad. Hope you don't have it! I think elevated TNF goes along with a few auto immune disorders- interesting.
I have been diagnosed with several rheumatological auto-immune disorders and I tell you one thing- see a doctor and get a diagnosis the SOONER THE BETTER! Because if you do have something you can catch it early and get treatment to prevent a flare up. A rheumatological flare up can cause progression of the disease making it hard to impossible to get back to the health you had before the flare up. Plus if its nothing you can be reassured and find out what it actually is.
So please don't wait another 2 years- (smile) Though I admit that I waited 2 years with ITP before I saw a hematologist- don't be like me
Poseymint: yes, thankfully I feel like I need to get it checked out soon and best case scenario, it isn’t HS and I have one less thing to worry about! Lol. I won’t wait another year that’s for sure, but it might be a couple of months before I can make it in. And that flare up business sounds scary, my aunt has had RA since she was a little girl and just recently began getting seen by a doctor so she has pretty bad damage to her feet and hands And 2 years with ITP symptoms without a diagnosis sounds like a nightmare, I could barely do one and felt like I was going crazy lol!
Yes it can be hard getting in to a doctor for many reasons. It took over a year for me to find a decent rheumatologist when I started having symptoms of Sjogrens syndrome. Very odd symptom of tongue, lip swelling- angioedema. We first thought it was an allergy to Nplate but it continued after I quit Nplate, then Promacta. My hematologist didn't know what it was but suspected my answers would be found in rheumatology. By the time I finally got a rheumatologist I was having more symptoms of Sjogrens/Lupus plus was positive for some of blood tests so got a diagnosis.
I was thinking that HS was rheumatological disorder with remissions and flare ups but after reading more, I guess it is not a rheumatology disorder. Here is something from the Mayo Clinic- again hope you don't have it. I haven't seen a connection to ITP but its common to have more than one auto-immune disorder.
When to see a doctor
Early detection of hidradenitis suppurativa is key to getting effective treatment. See your doctor if your condition:
Doesn't improve in a few weeks
Returns within weeks of treatment
Appears in several locations
If you've already received a diagnosis of hidradenitis suppurativa, keep in mind that the warning signs of a disease flare (recurrence) are often similar to those that occurred originally. Also pay attention to any new signs or symptoms. These may indicate either a recurrence or a complication of treatment.
Carcamoc10 wrote: ... So I google ITP and TNF-Alpha and I find a couple of articles talking about how this TNF-alpha is elevated in many ITP patients! ...
A few weeks ago I bought the Chinese herb called 'Artemisia Annua' off of amazon (need a new thread about that herb). Anyhow, after I ordered it, I read an account that it can elevate liver enzymes in some. Because I'm taking Danazol and the LAST thing I want to do is to get liver enzymes high, I've not even opened the Artemisia Annua bottle.
'TNF-alpha' seemed to ring a bell, but all this medical stuff is like alphabet soup to me. Did a search on the herb and TNF-a. Take a look at this study.
"An extract of the medicinal plant Artemisia annua modulates production of inflammatory markers in activated neutrophils"
Oh, BTW. A 44 count now? Nice. How many weeks have you been on 75mg Promacta now? Will this be a response to Promacta, or Rituxan, or both? Both seems quite possible. Glad that you ended up with both.
My acupuncturist once suggested a chinese herb supplement - I checked it out before buying & that saved me $, wasn't for someone with platelet problems. You really need to research before buying - just because something is natural doesn't mean it is good for everyone. Echinacea is one someone with autoimmune problems shoudln't take.
Isn't there a test to see if one has elevated TNR-alpha??
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
Hal: wow, that looks like something promising! Hopefully more research gets done on it!
And I’ve been on the Promacta for 13 weeks! I asked my hemo how he was going to measure the success of the Rituxan since I’m still on Promacta, and he said if my levels evened out he would take that to mean the Rituxan was a success and he would start a taper on the Promacta to see how my levels do. Honestly I’m scared of trying to taper it again, I crash horribly anytime my doses are lowered, but we will see! My guess is if I do crash, he’ll put me back on 75mg and might just leave me alone if it works!
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