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  • snowgoose
24 Feb 2010 16:50
Replied by snowgoose on topic 80+ year olds?
Hi,

You could try searching the old PDSA web site, which is still available for viewing, but no longer for posting :)

Kind Regards

Vanessa :)
  • surfnyc
24 Feb 2010 15:31
80+ year olds? was created by surfnyc
Anyone point me to threads with older people with ITP?
  • tacmom
24 Feb 2010 15:05
Rituxan was created by tacmom
Caitlin is still getting her infusion but I'm guessing she will be done in about 30 min or so. She was doing pretty good but then about two hours ago, she started crying (being real quiet, but tears were streamih down her face) because her stomach was hurting real bad. The dr said that wasn't a normal side effect. She developed a low grade fever so they gave her more Tylenol. They will send us home with steroids as well. Caitlin is feeling a little better but her fever hasn't gone away yet. They only had to slow down her infusion once. She still isn't feeling much better so I hope when we get home, she will start to feel better. Count this morning was 10 and she has some huge black bruises on her back and looks like she was beaten.
24 Feb 2010 13:46
Replied by on topic No Messaging Here???
No PMs/IMs here Tof, unfortunately. However you can email the person - you have to go to their profile and then click on Messages [or put cursor on it] and below that will magically appear Send Email, click on that.

So someone has to open up their email to get anything from you.

Not as easy as being here at the site and just being able to get a PM/IM right here :ohmy:
  • Kim
24 Feb 2010 12:13
Replied by Kim on topic Hate Waiting!!
Some doctors go crazy and admit, but most manage lower counts on an outpatient basis. The times you might experience an admit is upon initial diagnosis, generally when counts are below 10-20k, which might be because the doctor does not know how you'll respond to the low counts. He would be concerned with a person bleeding, so might err on the side of caution and admit as he initiates treatment. If you've worked with this doctor, he'll probably continue to treat outpatient, unless you counts drop to a new low, such as below 5-10k, although some doctors won't admit unless he seeing evidence of soft tissue bleeds. This would include mouth blood blister, or very heavy, non-stop menstrual or vaginal bleeding. If a CBC shows a low RBC or hemaglobin, he may suspect internal bleeding and if you're counts are low, he might admit. It really depends on the doctor, what his risk tolerance is and if his risk tolerance does not compare with yours and you're uncomfortable not being admitted, or don't want to be admitted, this is something you should discuss with your doctor. Get a good feeling on what his risk tolerance is and work out what works best for you and for him. There really is no standard protocol for admitting an ITP patient.

I prefer to be admitted if I show bleeding and my counts are below 10k, or if I'm below 5k and not showing any symptoms, except petechiea. I just think 5k or lower is way to low. But, I have decided that admitting isn't necessary at 5k or below, so I won't stand by that with strong convictions. I think it all depends on what else is going on, how I'm feeling, dealing with the stress of a drop in counts, etc. It's not black and white and I prefer a physician who will work with me in making the decision.

When you're a long standing ITP patient, when you switch doctors, you might experience a doctor who treats you as if you were a new patient, in that he'll admit at a higher platelet count then you might prefer. That's why it's important to maintain a relationship with a hematologist, so he understands you and your particular ITP progression and response to treatments. Make sure you provide any new hematologist with a complete write up of your history, which includes all treatments and response to treatments and how you've managed low counts. If he sees that you are an active, involved patient, he'll be more inclined to trust your judgement.

If you've developed a relationship with a hematologist and he won't trust your judgement, you feel is too aggressive on treatments, hospitalizes when you feel it's reasonably safe and just doesn't seem to want to work with you, it's probably time for a new doctor. Unless he can convince you why he's recommending a treatment, takes the time to explain, it's probably time to find another one. You want someone who helps you manage ITP, because you'll probably be managing it for the rest of your life. You don't want it to rule how you live, causing fear and anxiety. It will be hard enough to manage ITP and the ups and downs of platelet counts, so undue stress of a doctor who is anxious or a bully will just make matters worse.

Regarding nurses -- if you're seeing an oncologist, who treats cancer patients, sometimes nurses are responding to how a cancer patient would be with a count below 50k. Often they will bleed, because they not producing the large platelets an ITP patient produces. The nurse might not completely understand ITP, so when she sees a count of 16k, she thinks internal bleeding. In ITP, the risk of a bleed is higher than if you had normal counts, but it's really still a very low risk, unless you happen to be a patient who does bleed. Therefor weigh the response of an oncology nurse carefully, until she fully understands your ITP diagnosis. I've seen nurses really over blow ITP at counts below 50k, but not below 20k.

Make sure you completely understand your ITP and ITP in general, treatment protocols and work to manage your ITP, as opposed to dumping it completely in the lap of those who treat you. You'll appreciate hanging onto some of the control and I suspect your doctor will appreciate an involved patient.
  • Kim
24 Feb 2010 11:42
Replied by Kim on topic Acupuncture/TCM?
I find it helpful in managing stress and I think it also helped with fatigue and joint pain, although maybe just relaxing for an hour and focusing on that, I had some stress relief, which helped manage the joint pain. It did nothing for platelets.
  • tofer
24 Feb 2010 11:42
No Messaging Here??? was created by tofer
We are not able to message other members here or did i just toatally miss that?
Because i have friends here that i dont know how to reach the other way!!! :(
  • Kim
24 Feb 2010 11:39
Replied by Kim on topic Oh Where Oh Where Is Young Simon?????
He's on Face book and I see he's posting there on occasion. Probably just busy.
  • Kim
24 Feb 2010 11:39
Replied by Kim on topic Oh Where Oh Where Is Young Simon?????
He's on Face book and I see he's posting there on occasion. Probably just busy.
  • tofer
24 Feb 2010 11:38
Replied by tofer on topic Acupuncture/TCM?
Accupuncture rocks but i wasnt using it for my counts i used it for relaxation and some residual post chemo neuropathy. Great stuff.

I just love the holestic view that they take with accupuncture... :kiss:
  • JAB7955
24 Feb 2010 11:30
Promacta was created by JAB7955
My Mother was recently diagonsed with ITP. She has Chronic Lymphatic Leukemia and has been through several rounds of chemo treatment. The doctors do not know if her ITP was induced by chemotherapy or it was dormant and raised its ugly head. She has been treated with with steriods, retuxin, NPlate, and had her spleen removed. Nothing is helping. She has now been taking Promacta for past three days. She still is not doing well at all. How soon should we see a response from the Promacta?
  • eklein
24 Feb 2010 11:26
Replied by eklein on topic Please help me!! I'm SOOO scared..
Joya,
Yes, one or two other members of this forum have posted they they experienced the exact same thing, an out of body kind of feeling. It went away as the drug wore off. I never had dex but I wanted to let you know in case they didn't get to post soon. Erica
  • tofer
24 Feb 2010 11:23
so what supplements are you taking?
are you taking any of those powered supplements for strength & energy?
Tautine & creatine could easily be causing your bp to be to high... that N.O. supplement has huge amounts of chemicals in them.

You need to be careful what you put into your body right now...
24 Feb 2010 11:09
cindyduncan wrote:

dude im a powerlifter

A power lifter and you were a smoker?!

So has your blood pressure come back down? If not I'd be a lot more concerned about that than a platelet count of 70-80k.
  • Joya
24 Feb 2010 08:22
Replied by Joya on topic Please help me!! I'm SOOO scared..
Hey everybody..

I finished my dex treatment on monday.. So now it's detox time..

I had a question.. Has anyone of you ever had the feeling they were mentally weird or something from the medicine? I feel like I'm num to everything.. Just lying around, watching tv not caring about anything.. Unable to follow conversations.. It feels like my body is here but I'm not.. Like my innerself is slowly dissapearing..
I know it sounds a bit weird and stuff.. But I was just wondering if anyone of you ever had anything like this..

Joya
  • snowgoose
24 Feb 2010 07:38
This update for today is brought to you by the numbers 5 and 3. As in the number 535, which is today's platelet count. Down by another 100 or so :) ! And by the letters,D,T and C, as in Downward Trend Continues!

I saw my Dr today, and she was pleased that op cellulitis infection seems to have cleared :) .

Op site is still painful, but she said it will take about 6 weeks to heal.

Thank you for your encouraging words Sandi, Julia and Linda. I am beginning to feel better, although very tired.

Off for a MRI of swelling in leg tomorrow, and trial visit on Friday, it is neverending ;) !
:)
  • Kim
24 Feb 2010 03:04
Replied by Kim on topic Hypersensitivity reactions in lupus
I am not doing well....I made a BIG mistake tonight. I was not feeling well, my back and chest were hurting, which seems to be happening more lately. I could not lay down without increased pain. I took a Percocet and because I was concerned with taking a Percocet, along with a Zrytech, I skipped the Zrytech. I have no idea if I could take both and Now I'm awake without pain, but with intense itching, head achy and short of breath. I think I'm having a more severe reaction to the Percocet then I have had in the past. I can usually manage it without to much itching, but tonight is especially bad and I'm up at 2am watching TV, feeling miserable and worried, so decided to open the computer and check the forum and hopefully be distracted from how I feel. This is not good...I don't think there's a pain med left, which I can take. Can't take Tylenol or Aleve either, because they also cause itching. I have no idea what the hell I'm going to do for pain. I'm really worried about this and not sure I'm going to manage the stress of it very well.

You're right Sandi...it never ends and it sucks. I'm feeling the stress today of this crap and this middle of the night upset isn't setting well with me. I have to keep occupied with something or the itch and worry will make me insane. I took a Zrytech to see if it will help, but I actually think it feels worse in the last half hour since taking the Zrytech. I don't know if I should take some benedryl. I can't stand this anymore.... It's making me sad.

Regarding your sinus issues, have you tried a nasal antihistamine spray? It seemed to help me, although it's disgusting to spray in your nose and leaves a terrible taste and feeling in your mouth and nose. I think I'll go spray some now and see if it helps any with the itchy feeling I have in my nose and mouth.

Kim
  • Bunnie
24 Feb 2010 00:26
Replied by Bunnie on topic inflamation and Autoimmune disease
A quick google turns up this one from the Merck Manual

www.merck.com/mmhe/sec16/ch186/ch186a.html
  • LindaDorasami
24 Feb 2010 00:05
Replied by LindaDorasami on topic From Roller Coaster to Big Dipper! on Promacta!
'Hopi :) ng you have a speedy recovery and feeling great soon! :)
  • tortie
23 Feb 2010 22:04
inflamation and Autoimmune disease was created by tortie
Does anybody have more details about this article or other information that explains inflamation and Autoimmune disease?
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.
  • cindyduncan
23 Feb 2010 20:49
Replied by cindyduncan on topic my doc said i might have itp and thats it
dude im a powerlifter
  • Sandi
23 Feb 2010 20:27
Replied by Sandi on topic Hypersensitivity reactions in lupus
Gee, my normally medically-inclined brain isn't grasping that. I'll have to re-read tomorrow. I'm just not clear headed any more, probably due to the Vicodin.

The news stinks, Kim, no matter how you look at it. You always try to see the positive and that's great, but there is no END!

I have constant sinus issues too - ALWAYS stuffy. I'm actually embarrassed by my own voice...it's always nasal-y. How can you be professional at work when you can't speak clearly? Not to mention how miserable it is. Nothing helps.

I'm having a down day so I'd better shut up.
  • Sandi
23 Feb 2010 20:18
Replied by Sandi on topic Newly diagnosed w/SLE+ITP
Hi Penny. I'm very glad you found us - we need you as much as you need us (we are a small group down here). I'll try to answer your questions.

Is an ANA of 1:2650 only slightly positive? If your number is correct (although I suspect it is 2560), that is a very high ANA titre. ANA's go like this: 1:20 and 1:40 are negative. 1:80 is borderline positive, then the numbers double and go on up. Mine has never been above 1:320 that I am aware of. ANA titres can change...go higher and lower, so it's not time to panic about the high titre. It may not always be that high, especially once you are on treatments.

-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? I don't know about the nuclear dot, but speckeled is common in SLE. Sometimes autoimmune disorders overlap, so you might see a different pattern mixed in there.

-What does the anti-smooth muscle antibody do? To be honest, I don't know a lot about that antibody and a search didn't help much. I only found information regarding autoimmune hepatitis and Anti-smooth muscle antibody, but not much in relation to Lupus.

-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? On my reference range, anything under 11 is negative. Mine has been in the 40's. Your lab must use a different reference range than mine.

-When my platelets dropped, the blood smear showed that ovalocytes were prominent. Does anyone else have this? No, I haven't seen that.


-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? I don't think ITP complicates Lupus....it's another Lupus symptom/complication to deal with. The treatments for both can be the same, such as steroids, Rituxan, CellCept, Imuran, etc. I was diagnosed with ITP in 1998 and had years of steroids on and off. In 2003 and 2004, I had Rituxan which basically caused an ITP remission, but it also triggered Lupus for me (unusual reaction). Since the Lupus diagnosis 6 years ago, my ITP has been in remission.

You sure got hit with a lot at once. Mine was a much slower progression. It can be very life altering. I hope I helped!
  • Sandi
23 Feb 2010 19:28
Replied by Sandi on topic Rheumatology Appointment
Yes, good luck! Please report!
  • Sandi
23 Feb 2010 19:21
:laugh: :laugh: :laugh:

Good news, girl!
  • Sandi
23 Feb 2010 19:20
Replied by Sandi on topic Oh Where Oh Where Is Young Simon?????
I'll send him an e-mail and tell him it's check in time!
  • Sandi
23 Feb 2010 19:18
Replied by Sandi on topic Hate Waiting!!
I'm glad they got back to you. All doctors are different. I was still working with counts of 3; no hospital. Usually, the decision is based on symptoms.
  • Sandi
23 Feb 2010 19:11
Replied by Sandi on topic Not yet diagnosed, but anxious!
KB:

Yes, your count did go down, but 47 is still considered safe and generally above treatment level. I understand your concern; going from 109 to 47 is a big drop. That is the nature of ITP though (if you do have ITP). It's also possible that your counts are the same or have gone up.

In the meantime, your GP could order another CBC so you can get a more current count.
  • Kim
23 Feb 2010 18:58
Replied by Kim on topic Hypersensitivity reactions in lupus
Here's a good article on autoimmune chronic urticaria.

www.medscape.com/viewarticle/461843_3
  • Kim
23 Feb 2010 18:03
Replied by Kim on topic Hypersensitivity reactions in lupus
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.
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