A quick google turns up this one from the Merck Manual

www.merck.com/mmhe/sec16/ch186/ch186a.html

'Hopi ng you have a speedy recovery and feeling great soon!

Does anybody have more details about this article or other information that explains inflamation and Autoimmune disease?

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Platelet e-news – January 28, 2009

New Way to Block Inflammation in Autoimmune Disease

A promising new target for autoimmune disease treatment, a cell-surface receptor called DR3, has been discovered by scientists at the National Institutes of Health (NIH). Blocking the receptor may slow or stop the damaging inflammation involved in autoimmune disease. Mice engineered to lack DR3 were resistant to two immune system diseases, asthma and multiple sclerosis. DR3 is a tumor necrosis factor. Many potent treatments for inflammatory diseases interfere with the action of TNF.

Scientists find potential new way to block inflammation in autoimmune disease. INFOCUS, newsletter of the Autoimmune Disease Association. September 2008, 16(3), pg. 7.

dude im a powerlifter

Here's a good article on autoimmune chronic urticaria.

www.medscape.com/viewarticle/461843_3

I really find this article interesting, because it talks about Type II Hypersensitivity, causing thrombocytopenia. I also noted that in Type III, (which includes lupus) there's a decrease in complement, which I have never had with my lupus, except when I had DsDNA's. I'm wondering if my symptoms prior to transplant and currently experiencing, such as joint pain, fatigue and the itching and burning neuropathy, are HypersensitivitType II, as opposed to Type III and contributed to my ITP and not actually lupus, with ITP. I don't know, I'm just thinking out loud and my hands happen to be on the keyboard, so you're reading my thoughts. Lol.. Although I find this interesting, I hate it too. If it wasn't happening to me, I think I'd love to be a scientist and researcher, but then I'd just be going on my way and never have the reason to learn this stuff.

I thought of you.

I don't have a specific, constant trigger. I just never know when I'll have a hypersensitive reaction to something I eat, do or medication I take daily. Some medications are clear triggers, such as narcotics, heparin, sulfa drugs, while others, such as Advil or Tylenol will cause me to itch, but some times it's not any worse than what I experience on a daily basis. I tell you I was absolutely thinking I was going crazy, even considering an antidepressant to see if it helped.

The other day I had itchy bumps on my face, along my hair line and down my jaw line and my hands itched, but no bumps, just really red and stiff, after I was out with the dog for a while, talking to a neighbor. But, that doesn't mean it will always happen. Sometimes I'll be sick, with an upset stomach and cramping nausea, or itch more after eating cheese, chocolate or wine and other times not. Same with shell fish. I was making myself nuts with trying to figure out what the triggers were, finally I just gave up.

The immunologist said that I'm waxing and waning symptoms, based on the autoantibody production and degranulation of mast cells. I'll always have some symptoms, such as inflamed sinus, eyes itchy, runny nose or eyes. Cough, wheezing, itching and other symptoms of allergy, just never know how bad or what will flare.

He said it's not common, but seen in lupus patients, although he also said you can have this without lupus and isn't sure it's actually lupus related, or a primary autoimmune disease. I think what he was saying was to try and calm my fears about lupus/ITP/APS returning. My ANA is negative, as is DsDNA and APS, so I hope this is the only autoimmune disease I develope, although this is unpleasant, I guess I could learn to live with it. The combination of allergy medications he has me on work well and my symptoms are relieved. I do think the allergy medications raise my blood pressure though. I was doing well with normal BP and that was without my BP medications, but now my BP is going sky high, even with starting back on the BP medications at higher dose then I was on a few months ago. Now I have to go see my cardiologist to get another medication to manage the BP. I can never seem to eliminate or reduce medications and when I add one, I end up adding 2 or 3, if not more, just to counter the new medication. So, although the allergy medications are working, I'm struggling with something else. Argggg....it never seems to end!

You should go see an immunologist and see if that helps your rash problems, maybe a combination of allergy medications would help you too.

Hi everyone,

So, I've been diagnosed with SLE for 1 month, and I have found so much information in reading through the threads here. I was diagnosed on my 26th birthday, and have been reading about the disease since. I've found that the more I read, the more questions I have. Some of the questions I have are appropriate for my doctors, but I'd like to share my story, and maybe get some input from all of your experience. I apologize for the lengthy story that follows, but I want to get some of these questions off my chest!

[Quick background- I live in Canada, and am in the thesis-writing stage of an MA, so I'm lucky to have a flexible schedule and quite a bit of time to hopefully get better.]

I really can't pinpoint when my more general symptoms began, but I definitely started noticing changes in my energy level and mood last winter. It was also this time last year that my hands started showing more severe Raynaud's-like symptoms when I got cold. I've also been losing more hair since last spring, and this summer I was getting Raynaud's hands even in the frozen aisles at the Supermarket. I seemed to get tired really easily, after doing something as simple as the dishes, and I didn't feel excited to do much, but tried to push myself anyway, going to the gym up to five times a week, and then feeling useless for the rest of the day.
In September my gym membership expired, and I didn't renew: we were looking seriously at several properties, and knew we were getting a dog, so I wanted to wait and see what my routine and location would be. We then visited my home for Thanksgiving (Oct. in Canada). Our trip was great, but exhausting! When we were there I noticed my left great toe was sore, but I attributed it to too much hiking and dancing at a friend's wedding.
Arrived back home, and moved into the house. My toe pain came back, and was accompanied with pretty major swelling. I saw the campus doctor, and she sent me for blood work and x-rays, suspecting rheumatoid arthritis. The blood work only showed slightly positive ANA levels, which the doctor said could be the result of any little infection of some inflammation. She wanted to get me in to see a rheumatologist, but there's a severe shortage, and up to a 2 year waiting list in my province. My tests were monthly, and by December, the toe pain was gone, and was replaced with some swollen digits, sore wrists, ankles, and painful arches in my feet. Every morning was a struggle to get out of bed, and I had to go down stairs sideways, barely able to turn doorknobs most mornings. The campus doctor sent the rheumatology requisition form, telling me to expect at least a 6 month wait, and I started Arthrotec, which didn't really improve the joint pain. I was so depressed at the thought of further deteriorating while waiting for my appointment.
I went for my monthly blood test Friday Jan 7, and the results came back that my platelets were 59. So I got a call the next Monday asking me to get tested again the next day; on Tuesday, I had my blood drawn, came home, and got a call that the platelets had dropped to 8, and it was then that I noticed little red hemorrhage points on my hands and wrists. I had to get to the ER to see a hematologist waiting for me, and was told to pack for a few days (this is the day before my birthday!).
Over the next 24 hours I saw several hematology and rheumatology residents who all had different opinions, but finally the rheumatologist came to see me, and she and the hematologist confirmed I have lupus (SLE). It was also discovered through xrays that my hands are showing signs of osteopenia, or bone thinning. Very thankfully, I have never (yet) shown any lupus skin manifestations, which may be due to the very little sun we see here. I stayed in the hospital for a week, as I developed a terrible stomach flu after being there for a few days.
The criteria I fulfill are: ITP, inflammatory migratory arthritis, positive ANA, anti-double stranded anti-DNA, anti-smooth muscle antibody, and the Raynaud's.
I was started on a mg/kg dose of Prednisone (about 70mg), and have tapered 10mgs/week recently, as my platelets have risen. I'm now down to 40 mgs. I have an eye appointment in 2 weeks, and then I'll begin Plaquinil. I've been doing yoga once/week in a class for folks with limited mobility, and writing down everything I eat. I avoid refined products, including all white sugars and flours, red meat, alfalfa, and am eating between 1500-2000mg sodium/day. The only pain and stiffness I ever have now is in the arches of my feet, my right hand digits, and my left pinkie knuckle. This pain is for the most part much less great than before Prednasone. I'm a little bit more emotional, sometimes euphoric for silly reasons, but I haven't been raging or sleepless (aside from a few nights). I have seen my Rheumy once, and will again in April. I see my Hematologist weekly, and my platelets are now 159.

SO FINALLY, after that lengthy history, here are some questions I hope you can shed light on!

-Is an ANA of 1:2650 only slightly positive?
-My bloodwork shows 'positive titre = 1:2560 speckled pattern, positive titre= 1:2560 nuclear dot pattern.' In material I've read, it doesn't seem like nuclear dot is common in SLE?
-What does the anti-smooth muscle antibody do?
-I don't have the most recent anti-dsDNA blood work, but back in Nov. it was 4.9, and it looks like the normal parameters are 0-4.2. Is 4.9 fairly low, are they usually higher?
-When my platelets dropped, the blood smear showed that ovalocytes were prominent. Does anyone else have this?


-And last question, how does ITP complicate lupus?? My hematologist is very nice, and answers all of the questions that she can, but she has said we just have to wait and see. I know that she can't predict the future, but have many of you had successful platelet remissions without being on drugs?


Again, I apologize for such a long story and for all of my questions, but I can't wait to hear your feedback!

Thanks so much, and best wishes to you all.

-Penny

Are you having any other symptoms besides the heavy period? What does your doctor say about your cold hands/feet? When will you be able to get an appointment with a hematologist?

You are concerned that your count may be lower than the 47k it was 2 weeks ago - why not go in and get a CBC done and then you will know for sure. I like the quote I have in my signature: Instead of wasting your time worrying about symptoms, just get it checked out. -Nieca Goldberg, MD

If you look under the 'About ITP' section of the web site, you'll see a link to diagnosis questions. These can help your doctor make sure you have ITP. PDSA sometimes hears from people who are misdiagnosed,so it is important for your doctor to have as much information as possible. The new ITP Consensus report lists the recommended diagnostic tests (see link in the news section of the home page)

Good luck with this.

Sandi - I don't think 47 is a safe count as mine drastically decreased. I have been reading up though like you suggested and I feel a little more informed.

Cindy - I have yet to see a hematologist yet...waiting for an appoitment. So, no I have not recieved any type of treatment. What scares me is that my count went from 109 to 47 in one month. I has almost been 2 weeks since then and who knows where my count is today.

Hi Pauline,
Just wanted to wish you and Caitlin the best tomorrow with the start of Rituxan. Good luck!

Karen
mom to Jordan
diagnosed April 2009

thanks for the reply! They just called and told me to up my pred to 20mg. Hopefully that works!

If you aren't bleeding and don't have a history of bleeding, well maybe there is no reason for hospitalization? Lots of us go through our daily lives with counts under 20. I worked for months with counts like that and was never hospitalized. Treating is generally a good idea with counts that low, hopefully the pred will send you right back up.
Erica

The hema nurse called last night and said my platelets were 16K and to see if I was actively bleeding, which I'm not. Said she would talk to the hema and call me back. I AM STILL WAITING!!! I am on 10mg of pred 1 day a week. I have been bouncing around the last couple of weeks. But this latest drop I went from 38K to 16K. Do you think I will have to go to the hospital? I hope not! I was admitted when I was first diagnosed back in June 2009. Or will they just up my pred and wait and see? This is the 1st time this has happened and I don't know what the next step is or should be. Curious to see what others experiences are/were with this.

Thanks Kim, that seems to explain some of my stuff too. I was outside midday for ten minutes the other day (winter sun, wearing hat and coat) and I got itchy bumps on my face, the only exposed skin. And different medications are giving me coughs, as well as some foods (chocolate!).
Erica

If he's still on the stroke ward over here im sure he will be knackered! I think a 57hr wk is an easy one for young docs here!
Julia

Great news i hope it levels out nice. Are you feeling any better?
Julia

I dont know but 70-80 sounds like not a bad count to me. Plenty of platelets to stop any bleeding & no cancer. Dang sounds like a good year to me. The tests are scary but it seems to me that so far you are doing well.

However that BP is not a good thing. Get out walk around the block.

Hi Lady with a Crunchy Baby!(?!)

OK, so it was 25 years ago when I was nursing mine, but I was told that having a beer would improve my output--and might even help me relax. However, since I can't stand beer, the doc recommended brewer's yeast tablets.... no help in the relaxation department, but I/we successfully went a whole year! Lots of liquids, of course. And it would have been a big help to have some sort of setup to catch the overspray from side 2 while baby was working on side 1! Ahh, memories---! Ann, Caitlin's Mom

Saw the immunologist yesterday. He's convinced I don't have any allergies to the environment or foods. He ran tests and ruled that out. He said I have antibodies to my mast cells, hypersensitivity reaction.

It doesn't matter what I come in contact with - everything has the potential to cause an over active reaction, even emotions, stress, etc. That explains why I had a flare when my mom was sick and I was worried, explains why I had a flare before going to China. Bad stress and good stress, resulted in a over sensitivity reaction.

Drugs are a huge problem for me, one day it will be ok, the next I'll take the same thing and have a problem. Foods will do the same thing, but not always, it will depend on what else is going on that might trigger an over sensitivity reaction.

He thinks this is probably been going on the last several years of my lupus, prior to transplant. Might have contributed to why I did ok with rituxan, but than had a reaction to it, but did fine when I had it post transplant. Why one platelet infusions caused a problem, but another one didn't. Why it seems plaquenil causes itching and when I stopped it, I thought the itching stopped, but then it came back. Why I have been going absolutely crazy with itching and trying to figure out what a trigger might be and never could.

I'm on 2 antihistamines (Zrytech, Allergra) Zantac, which reduces H1 antihisomine, along with an nasal and an eye antihistamines, steroid nasal and eye drops. He also wants me to stay on the 5mg of prednisone and if I start to flare with itching, despite all the antihistamines and have any lung wheezing, to increase to 10mg and call him. He has me seeing him monthly, because he wants to make sure I'm not degranulating too many mast cells and causing increased lung symptoms.

He said there isn't much he can do about it, except treat the symptoms and it's autoimmune disease, so if the symptoms get severe again, despite the antihistamines, he'll try immune suppressants. Well golly......

I found this information and thought anyone else who has itching or allergy symptoms with their lupus might find it interesting too.

pathmicro.med.sc.edu/ghaffar/hyper00.htm

Does anybody know how our young Dr Simon is doing???

I miss him !

Vanessa

Down another 100 from yesterday to 647 ! Hopefully a trend!

Vanessa