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Other Platelet Disorders

Rhema Appt

  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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14 years 10 months ago #298 by Kim
Replied by Kim on topic Re:Rhema Appt
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

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14 years 10 months ago #299 by tigereyes
Replied by tigereyes on topic Re:Rhema Appt
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.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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14 years 10 months ago #302 by Bunnie
Replied by Bunnie on topic Re:Rhema Appt
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.

"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

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14 years 10 months ago #309 by Stangie11
Replied by Stangie11 on topic Re:Rhema Appt
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.

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14 years 10 months ago #312 by Stangie11
Replied by Stangie11 on topic Re:Rhema Appt
Thanks Sandi. When I go off prednisone I feel like that way too. I thought I was going crazy all year because I couldn't think straight, I couldn't remember anything, etc. And then I realized it was autoimmune.

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14 years 9 months ago #590 by tigereyes
Replied by tigereyes on topic Re:Rhema Appt
I had my follow up last week and everything was negative. The doctor was a bit suprised since from all of my symptoms she expected something positive. The only thing that was abnormal was some thyroid test. Not the tsh but some other test. She did switch me over to Imuran and cut back on the cellcept. I go back next month to see how I am responding to that and go from there.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 9 months ago #591 by Sandi
Replied by Sandi on topic Re:Rhema Appt
What was negative? How is the itching?

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14 years 9 months ago #614 by tigereyes
Replied by tigereyes on topic Re:Rhema Appt
Everything was negitive on the report. Well with the exception of the thyroid anitbodies those were the only positive thing on there.

Just as suddenly as the itching came on its stopped. I woke up one morning and it was gone. However the rash on my cheeks has gotten worse.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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  • Kim
  • Offline
  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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14 years 9 months ago #615 by Kim
Replied by Kim on topic Re:Rhema Appt
Thyroid autoantibodies can cause itching, although I'm not sure how, but I was tested for antibodies to thyroid for my itching. My was negative, as was all my allergy testing.

I'm glad your itching has stopped. I wish mine would. I'm having a whole slew of other symptoms, which I think point to lupus, as they are the same symptoms I had prior to transplant. Extreme fatigue, joint pain, muscle pain, all increased. My eyes are burning and very dry, my nose burns, I'm nauseous after I eat and have actually lost 10 pounds in the last couple of weeks. Headaches...the list goes on.

I'm very frustrated with it all. I'm taking 3 allergy medications, steroid eye drops and nasal spray, which does help some, but I'll flare and despite the medications, I'll feel miserable for a few days, come out of it, only to go back to miserable if I do too much. All I'm doing lately is sitting around and it's making me depressed.

At least the rash is cleared up, but if I scratch, it reappears. I see the immunologist in about 10 days, so hopefully he'll have suggestions on managing this better.

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14 years 9 months ago #725 by tigereyes
Replied by tigereyes on topic Re:Rhema Appt
Kim I have no idea how you manage after about 3 weeks I was ready to scrub my skin off with a brillo pad. How you have managed for years is beyond me.

Im not sure but I think there may be something wrong with my back. Ive noticed after running my left foot goes numb usually for a few hrs. Once I wake up in the morning its better but I know thats not normal. I should bring it up to my dr. Its kinda annoying to be honest with you. I dont run much just the dog in class but every week now my foot is numb like its asleep and will be like that until I wake up in the mroning.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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