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29 Jan 2010 13:00
  • Stangie11
  • Stangie11
I am sorry about your pain. I don't know if this relates, but my friend with MS and other unknown autoimmune disorders, suffers from that insane itching. She was only receiving mild relief from prednisone and allergy meds. She just visited Mayo and they ran a bunch of allergy tests on her and it appears that she has developed new allergies to lots of things. She has found some comfort in elimating many things from her life.
Category: Lupus
29 Jan 2010 10:22
  • joycefleming
  • joycefleming
hang in there this is not a fast fix problem . Our bodys take time to recover from all of the meds and stress that we go thru at this time , lots of success stories out there read them , they will help
29 Jan 2010 10:15
  • mleuch
  • mleuch
I was diagnosed with ITP after developing petechia all over my legs and having a platelet count of 5. I was admitted to the hospital and initially responded to dexamethasone and IVIG. Three days later my counts went from 39 to 3. I received more IVIG and a splenectomy and I got to 119 on prednisone. Four days later my platelet count went back to 16 even on the high dose prednisone. My doctor insisted on rituxan that same day. I agreed with her decision but I'm feeling overwhelmed that everything is moving so quickly and my platelet count doesn't seem to really be improving. Has anyone else experienced such frustration?
29 Jan 2010 10:10
  • tacmom
  • tacmom
Amen to that Sandi! I'm just at the point where I'm tired of all the drs appointments and it really makes it difficult to plan at work since I am a teacher. I have to update my substitute book every week so that the lessons are updated and my students aren't just being given "busy" work. (One of my pet peeves!) I truly love my job and I know I do make some kind of impact on their lives. Being a mom, of course, is my first priority though! Sometimes my students get upset when I take off so much. (Things would be so much easier if things only happened in the summer, but Caitlin's counts are ususually good during those months.)

Ali-I'm lucky that only one of my two girls is a daredevil, but it just so happens to be the one with ITP. My other daughter is very careful & listens very well. They are so much fun because they are so different from each other. (However...even as careful as my older daughter is, she has broken some bone in her body 5 times while Caitlin has only broken her wrist once.) I HATE those trips to the ER so I can definitely sympathize with you there!
29 Jan 2010 06:20
  • CindyL
  • CindyL
I left a reply on the other board too. Your doctor doesn't want you to do the Win-Rho with a count of 147, does she? I'd love to have a count like that!
29 Jan 2010 02:33
  • Bunnie
  • Bunnie
I don't know about the drugs and contraindications. One of my nephews was diagnosed as ADD and took them for a while. My sister found a natural practitioner who does a body scan that is based on the technology that NASA uses. She swears that when he read the scan back to her that he knew things about her boys (youngest has asthma) and their behavior that he couldn't possibly have known. He said that the older one didn't have ADD, that his body had never flushed the mercury from his childhood innoculations. Both boys were put on some natural drops and both improved...

I'm naturally skeptical about a lot of "natural" since there is no real regulation and quality control on a lot of the remedies and no real guidelines on proper dosing. However, this seemed to really work for the boys.
29 Jan 2010 02:17
  • Bunnie
  • Bunnie
My mom has gone through 6-7 years of dealing with hives with similar itching issues. It seemed to be worst late evening and during the night. The first bout was over 2 years. At the end of the first round, the allergist finally put her on a cocktail of seven different drugs that work on allergy and symptoms for all types of symptoms (nasal, skin, stomach, etc), like benadryl, allegra and even Zantac and that seemed to put them in remission for about a year. The two weeks she did that did slow her down with the typical lethargy the anti-histimines do for some. Also, it seemed to also go hand in hand with finally getting her on T3 (cytomel) vs T4 (synthroid) to manage her hypothyroidism.

They have come and gone in the years since, but not as badly as that first 2 years. Interestingly, last fall, they decided that she needed to have deep gum cleaning and the peridonist thinks she may have had a low grade infection for a long time. Since she went on the antiboditics and had the dental work, No hives.

Hang in there.... the fatigue can become a nasty cycle. I'm down under 30 again this week. Come home from work, to tired to really cook or pack a nutritious dinner or prepare a lunch for the next day. Fall asleep on the couch, wake up at midnight or 3am, check my email and post, go to bed. Hit the snooze bar until I'm rushed to get to work, with no packed lunch and grabbing junk food for breakfast and then lunch... Actually looking forward to WinRho infusion on Monday.
Category: Lupus
28 Jan 2010 22:33
  • freckles
  • freckles
i can tell you in 2001 i was diagnosed with a count of 9. my counts have run between 7 and 14 and i have never treated and never had a problem.
28 Jan 2010 22:24
  • Sandi
  • Sandi
Giselle:

I worried about bacteria even before I had ITP and Prednisone. I watch too much TV.

Anyway, I wouldn't worry too much about a short taper. I've been on 5 to 15 mg's for nearly six years and do just fine at the dentist. I've had cleanings, fillings and a root canal...no problems. You do have to be sure that your counts are good enough though.
28 Jan 2010 22:14
  • tigereyes
  • tigereyes
Thank you both for the suggestions. It seems worse first thing in the morning and at night. Im and the itching is starting again. I really just want to and cry. Im just having a why me week I guess. I feel extremly overwhelmed. Work isnt even stressful right now and yet I feel like Im at the end of the rope. Im so tired by the time I get home that all I want to do is cry and climb into bed. I take it all out on my boyfriend and I cant seem to stop myself. I find the littlest thing to nitpick at. I just need help dealing with all this.
Category: Lupus
28 Jan 2010 21:34
  • Kim
  • Kim
Benedryl didn't do anything for me either. The pharmacist told me it works differently and suggested I try Zrytec, which works on allergy type rashes and would work better then benedryl. That's how I tried Zrytec, on his suggestion. When I saw the immunologist, he saw that the Zrytec was not doing much, although it was helping. He added the Allegra and Zantec. It took a few days to feel the relief and I notice if I don't take it at a good time, it wears off and is harder to get back under control. It's still there, but at least I can manage it better. Good luck tomorrow
Category: Lupus
28 Jan 2010 20:26
  • gsh
  • gsh
Hi all - I'm going for my first dental cleaning with ITP and wonder if there's anything I need to be thinking about beforehand, other than having enough platelets so I don't bleed.
Are there risks?
Issues with being on low dose prednisone (I'm at the end of a short taper) and bacteria?
Any tips?

Thanks,
Giselle
28 Jan 2010 20:02
  • lucidawn
  • lucidawn
Ali,
We saw the pediatrician today. He perscribed advair for Tim's asthma control. Tim loves seeing him,too. I think he see's him as a sort of fatherly figure. Tim is missing his father in his life. His father left 11 years ago. He's one of the positive male figures, though of course there is no real relationship there, but there is of course the psychological dependence that happens sometimes with doctors. I think its a pretty healthy one, anyway.

So, the outcome of the appointment was that he agreed that splenectomy was drastic and permanent, and that immune suppression with drugs is reversable. And he also remembered that Tim's grandma's splenectomy did not work and pointed that out.

Tim is still kind of bucking a bit, he says he thinks a splenectomy is inevitable. He's wrong. Splenectomy, in my opinion, is not viable at this point, and is risky with such low counts. Tim's grandma says her splenectomy almost killed her. It took her two weeks to get her counts up hight enough for the surgery, and then it didn't work.

So, I'm not for it. That's what I'll say tomorrow. The other option is to walk around with low counts and treat bleeding symptoms. We might have to do that.
28 Jan 2010 19:16
  • Sandi
  • Sandi
I really feel bad for you two. I can't imagine how awful that is. I have burning skin all winter long, but not the itching.

Jennifer - I am going to suggest something really weird. I rarely believe in alternative treatments, you know that. But have you looked into Mannose? When I was at my worst with a high dsDNA had nasty neuropathy, I bought some. By the time the can was finished, the neuropathy was nearly gone. My dsDNA has been negative since. I do still have other Lupus symptoms, but they are managable. It's expensive, but other than that, can't hurt anything. I sometimes think about trying it again.
Category: Lupus
28 Jan 2010 19:07
  • Sandi
  • Sandi
I don't blame you, Pauline. There comes a time when you just need that remission already. It gets old.
28 Jan 2010 18:23
  • dbishop
  • dbishop
Hey Ali,

Devyn goes back for a CBC in two weeks....sooner if he shows signs that they have dropped super low. She still hasn't classified Devyn as cronic but i think she is holding back for my sake. Who knows anymore....as you said the only predictable thing about ITP is how unpredictable it can be!!

Deanna
28 Jan 2010 18:02
  • alisonp
  • alisonp
Hi Donna,

How did your trip to the doctor go - any progress on the tablet taking front??

Ali
28 Jan 2010 17:26
  • tigereyes
  • tigereyes
The thing is this came on so fast. i had the reaction 2 weeks ago and now I burn, itch...Kim thank you for the suggestions, im not sure if the benedryl helps because it knocks me out or if it actually does something. I will bring this up tomorrow and see what he says.
Category: Lupus
28 Jan 2010 16:43
  • alisonp
  • alisonp
Hi

I sympathise with the restriction of activity problems you are having. Dougie has been in trouble at school for playing footie at break this week - he has been very clearly told he was banned till his count recovers a bit, but gets told off every breaktime, and then still goes out and does it again the next time. I have had letters home from school every day this week, and I am not entirely sure I know what to do to stop him other than telling the teacher to keep him inside at break. His eldest brother Glenn clearly believes that he is invincible, and I wonder if Dougie has a similar approach to life. Glenn has been in hospital twice last year and A&E three times, because he has had accidents falling off his bike at the BMX track. One broken arm, two concussions and many, many cuts, bruises and lacerations later, he still has no sense. I am wondering how many times it will take!!! 2010 has been incident free so far, but I am not holding my breath!

So, I hope that Caitlin manages to stay safe until the middle of the month anyway. Can you bribe her in any way to keep those feet on the ground?

Ali :cheer:
28 Jan 2010 14:14
  • pawee
  • pawee
Today, I had my counts done and my platelets went down from 167 last week to 147 today. I don't know why it dropped since I didn't taper my prednisone yet. I had my monthly visitor too so maybe that affected it? Oh well....depressing but that is reality.

But my HGB was lower than last week's too though, last week it was 13.3 today it was at 12.5. But what's really weird is that today my counts said I had "Reactive Lymph" of 6 (which was High) Anybody know what that means? I don't think I have seen it before in any of my counts so I am very curious what that means.

My Hema was wanting to try WinRho for me before but will that be safe considering that my HGB is at the lower end of normal? I know WinRho will make your HGB drop one or two points. I will ask her when I talk to her later today.

Hope you all have better news about your counts today!!
28 Jan 2010 13:56
  • Kim
  • Kim
I also use ice packs, which help, but it's so freaking cold, I end up freezing. Try that, but not too cold. In the summer I slept with ice packs, but can't do that in winter.
Category: Lupus
28 Jan 2010 13:55
  • Kim
  • Kim
Are you taking anything for it? Allegra, Zrytec, other antihistamine drug? You can try Sarna lotion, although it's clearly a systemic problem and the cream will be very temporary and might not even work. I find that it does give me some relief, although it doesn't last longer than a moment. I just keep applying it, so I don't scratch too much. I've also woke up with blood all over my sheets, so I know I'm scratching at night. With the Zrytec, I notice I do sleep a little better, but in the morning I'm really groggy and don't get moving easy. I also take Zantec, a GERD medication, but it's an H2 Histomine blocker, so it helps with itching. I take that 2 times a day, along with Allegra twice a day and Zrytec at bed time. I'm also on 5mg of prednisone, but even with all these drugs for my rash and itch, it still bothers me, just not as much. If I miss a dose, take it later or to early in the morning, I'm bothered more at night, so I take it late morning and at bedtime, so the morning dose helps keep me from itching throughout the day and into the evening and the bed time dose keeps me asleep and not itching too much. I notice that I start to itch more around the time I take the morning dose, at 11:00.

Have you had the rash biopsied? It should be, so talk to your hematologist about getting a biopsy, or just make an appointment with a dermatologist who can biopsy it. You need to find out if it's a lupus rash, hives, or other autoimmune rash. Although, getting it biopsied might not confirm anything and you'll still have no clue, but if it's vasculitis or lupus, you'll need treatment to knock it back, because vasculitis in the skin can mean you might have vasculitis in other organs. Lupus rash that first appears, or gets worse, could mean lupus flare and possible internal organ lupus attack.

Creams won't do much, because it's systemic...pick up some over the counter Allegra and Zrytec and see if that helps. The combination of drugs I have now is about the only thing that gave me a little relief. I know there are other drugs the immunologist talked about trying if I don't get relief from these drugs. There are some immune suppressant drugs and he also said Plaquenil would help, which is why I went back on Plaquenil. If you're on Plaquneil, maybe a dose increase for a while. He suggested 400-600 daily for me. I started back on 400.

Good luck tomorrow...I know how you feel, itching is the worse, anxiety provoking when you can't scratch. I can't scratch my legs, because I have chronic clots and my legs swell, so when I scratch, I end up with infections and I think that has made my problem worse, because I'm always fighting a bacteria that gets under the skin when it breaks from scratching. This might be what's happening with you too. Each time you break the skin, you're introducing bacteria, which your body has to fight off and with autoimmune disease, your body over reacts. It's a vicious circle that needs to be broke.
Category: Lupus
28 Jan 2010 13:11
  • tigereyes
  • tigereyes
Ok I dont know what to do. Im itching and burning. Last night in my sleep I scratched my arm so bad that I broke the vessels under the skin and it looks like a someone grabbed me and I pulled away. My head is covered in scabs from scratching in my sleep and my nose keeps bleeding. I keep getting puss filled pockets on my face that once one goes away 2 more pop up. Im really having a bad week. Im so tired and even with an ambien Im not rested. I have a dog event this weekend and Im not sure if I should even go. If I dont go I lose my entry fees and I was really looking foward to going this weekend. I see my hema tomorrow and Ill bring up the itching and burning. Im not sure what else to do, cortosone cream and benedryl cream doesnt do anything. With a dose of 30mg of prednisone should I be having any of this going on? I feel like a zombie here at work and dont want to ask to leave early. I leave early every friday for blood work and now will be coming in late on a certain day to do my rhema appts. Im not sure what else to do. :(
Category: Lupus
28 Jan 2010 12:33
  • tacmom
  • tacmom
Still flitters at 26!! Boy, I've got a long road ahead of me! My husband and I see her trying all sorts of skydiving activities and skiing down the black trails when she is older! One funny story...we went to Disney World when she was 5 and we were on the ride called "Thunder Mountain". Caitlin didn't think it was fast enough so she started saying "booooorrrriiinnng" and by the end of the ride, alot of the other riders were echoing what she said. It was hilarious! We even heard it on other rides throughout that same day!! My older daughter thought it was so scary, lol!

Just spoke with the doctor. She is not going to get Rituximab until after she sees the Rheumatologist Feb. 16th. She said she wants to consult with some of her colleagues at a conference tomorrow to see if there are any other treatments Caitlin should try before Rituximab. Personally, I don't want to go through a whole list of things. I want to do the next "big" step that has a possibility of putting her in remission. She's not a kid that is going to settle for music lessons or any slow activity like dance. She watches her sister in competitive dance and makes fun of her, with her leaps & jumps & slowly moving her arms in the air. (Bad, I know, but typical sister!) It is time for me to just take a deep breath and BE PATIENT and trust that the drs will do the right thing.
28 Jan 2010 10:59
  • lili
  • lili
Good to hear that he's making progress and I sure hope he continues to recover.

Lily
Category: Social Chat
28 Jan 2010 10:33
  • lili
  • lili
Hi Norita,

I'm very responsive to prednisone and 20 mg would work for me too. Last time I used 30 mg. After 4 days my counts were 30-40 mg and after a week they were 150. I think that you might get a faster initial rise if you use a higher dose which would could be important if there are bleeding problems.

I'm one of those people, like yourself, who can get by with a dose of 5 mg of pred or less, so I tried to get off of it last September. Unfortunately, my counts fell to 6K after 3 months, just when I was starting to get over the prednisone. However, I knew that I respond well to the prednisone so only stayed at 30 mgs for a week and then dropped down to lower doses fairly quickly.

I'm going to stay around 5 mg for a month or 2 and then try to get off of it again. It's worth a try at least.

I hope that you get your counts up quickly. I'm not comfortable myself with counts below 10.

Lily
28 Jan 2010 09:06
  • redmage20386
  • redmage20386
good news he's making progress, i hope he's going to be ok
Category: Social Chat
27 Jan 2010 20:14
  • lucidawn
  • lucidawn
Ali,
We are going to see the regular ped tomorrow. Tim really likes him. I'm hoping that he can talk him into complying with meds. Friday we see the hemonc and get a cbc. I expect his counts to be low, but he has no symptoms right now. That doesn't really mean anything, though. He can be zero and have no symptoms. We'll see what the hemonc recommends.
27 Jan 2010 19:41
  • Sandi
  • Sandi
Jen:

I'm sorry to hear that. Rashes have always been my big fear and so far, I haven't had any. I hope you can get it under control soon.

Angie:

No, I don't have any side effects from Prednisone, but I've been doing it for so long I don't think I notice. I DO notice when I don't take it...I'm unable to function. It's like my whole body shuts down and my brain gets numb. My body also gets incredibly stiff and I feel like the Tin Man.
Category: Lupus
27 Jan 2010 19:28
  • Sandi
  • Sandi
I hope they didn't drop either! Good luck!
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