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My son suffering with chronic itp
Hi, My son at 20months old he diagnosed ITP in 2011,treated with ivig, prednisolone, 2011 to 2013 we suffered a lot...2014 onward he is fine,upto 2020 jan he is fine,one morning he suffering with motions and low fever,That day onwards his platelets counts decreased to 40k...Still we r facing problem
Hi, My son at 20months old he diagnosed ITP in 2011,treated with ivig, prednisolone, 2011 to 2013 we suffered a lot...2014 onward he is fine,upto 2020 jan he is fine,one morning he suffering with motions and low fever,That day onwards his platelets counts decreased to 40k...Still we r facing problem
prasadyarra
in
ITP Support Association
5 years ago
Changing to Xeloda
Hi ladies. Had terrible tumor on spine in November so had to have a spinal fusion and rads before I could begin any chemo drugs. Been on Letrozole . Had 2 weeks on Ibrance but blood counts went so low stopped in 2 weeks. New PET showed progression and new bone mets! Onc switching me to Xeloda. Thinks
Hi ladies. Had terrible tumor on spine in November so had to have a spinal fusion and rads before I could begin any chemo drugs. Been on Letrozole . Had 2 weeks on Ibrance but blood counts went so low stopped in 2 weeks. New PET showed progression and new bone mets! Onc switching me to Xeloda. Thinks
Duffles
in
SHARE Metastatic Breast Cancer
5 years ago
March 7 2020 CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM Saturday 8:00am - 12:30pm Rockefeller Auditorium 430 East 67th St Manhattan
To register: https://newyork2020.questionpro.com CLL Society Inc. • P. O. Box 1390 • Claremont CA 91711 • https://cllsociety.org 2019-2020 CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM In partnership with Memorial Sloan Kettering Cancer Center, the CLL Society invites you to attend our informational CLL
To register: https://newyork2020.questionpro.com CLL Society Inc. • P. O. Box 1390 • Claremont CA 91711 • https://cllsociety.org 2019-2020 CLL PATIENT AND CAREGIVER EDUCATIONAL FORUM In partnership with Memorial Sloan Kettering Cancer Center, the CLL Society invites you to attend our informational CLL
lankisterguy
Volunteer
in
CLL Support
5 years ago
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Living with Osteo
Hi, I have lived 30-odd years since my diagnosis and think I’ve been lucky in being able to avoid spinal fusion back then. Suddenly have developed crumbling jaw which means my teeth have started falling out!! My dentist has not mentioned anything about a connection but until I see her later this week
Hi, I have lived 30-odd years since my diagnosis and think I’ve been lucky in being able to avoid spinal fusion back then. Suddenly have developed crumbling jaw which means my teeth have started falling out!! My dentist has not mentioned anything about a connection but until I see her later this week
Me20244
in
Bone Health and Osteoporosis UK
5 years ago
Early Retirement from Work.
Morning Everyone. I have recently been diagnosed with fibromyalgia/chronic pain syndrome. It has taken 4 years to get to this point as I also have spinal degeneration in my neck and lower back which was clouding the symptoms of the fibromyalgia. I had a spinal fusion on C4 C5 & C6 C7 last August but
Morning Everyone. I have recently been diagnosed with fibromyalgia/chronic pain syndrome. It has taken 4 years to get to this point as I also have spinal degeneration in my neck and lower back which was clouding the symptoms of the fibromyalgia. I had a spinal fusion on C4 C5 & C6 C7 last August but
Ijo1
in
Fibromyalgia Action UK
5 years ago
Newly diagnosed after years of problems
Hi, everyone. I wanted to take a moment to introduce myself and share my story. I was diagnosed with FND just a few months ago after years of neurological problems. They first started in 2006 with pain, mostly in my back, then I started having bladder problems, a foot drop on the right, mild muscle
Hi, everyone. I wanted to take a moment to introduce myself and share my story. I was diagnosed with FND just a few months ago after years of neurological problems. They first started in 2006 with pain, mostly in my back, then I started having bladder problems, a foot drop on the right, mild muscle
poppymom23
in
Functional Neurological Disorder - FND Hope
5 years ago
IVIG infusion in Mexico
Trying to find out if you can get IVIG infusion therapy done in Mexico and the cost?
Trying to find out if you can get IVIG infusion therapy done in Mexico and the cost?
pragnar
in
CLL Support
5 years ago
Back in the game
I'm writing this just to share my story , and hope something in it will inspire others. I started running a couple of years ago , did C25K on a treadmill because I didn't want to be seen running outside . My running style is shocking - a very straight legged jog ! I then took the plunge and went to my
I'm writing this just to share my story , and hope something in it will inspire others. I started running a couple of years ago , did C25K on a treadmill because I didn't want to be seen running outside . My running style is shocking - a very straight legged jog ! I then took the plunge and went to my
Exbox
in
Couch to 5K
5 years ago
I was diagnosed 8 years ago today
I was diagnosed 8 years ago today, as a matter of fact, and I completed my sixth phase of therapy a few weeks ago when I had to get off of Acalabrutinib because of the cardiac effects i was having, which had actually started in my seventh month of Ibrutinib. My previous treatments were Rituxan, in
I was diagnosed 8 years ago today, as a matter of fact, and I completed my sixth phase of therapy a few weeks ago when I had to get off of Acalabrutinib because of the cardiac effects i was having, which had actually started in my seventh month of Ibrutinib. My previous treatments were Rituxan, in
KevinCLLITP
in
CLL Support
5 years ago
Have you had IVIG treatment for immune issues?
Hello, I have slightly raised NK cells and the best treatment to manage this is IVIG based on analysis of this, intralipids and prednisone. Annoyingly it’s the most expensive treatment and comes with added risks as a human blood product. Please can you get in touch if you have had IVIG treatment? I am
Hello, I have slightly raised NK cells and the best treatment to manage this is IVIG based on analysis of this, intralipids and prednisone. Annoyingly it’s the most expensive treatment and comes with added risks as a human blood product. Please can you get in touch if you have had IVIG treatment? I am
Hidden
in
Fertility Network UK
5 years ago
Are there different IgG formulations for IVIG ?
I thought I read a year or so ago that there may be different formulations of IgG; some better and some not as good. Would someone confirm whether this thought is correct or not and if true, what manufactures are involved. I also understand that there are regional shortages of IgG for transfusions.
I thought I read a year or so ago that there may be different formulations of IgG; some better and some not as good. Would someone confirm whether this thought is correct or not and if true, what manufactures are involved. I also understand that there are regional shortages of IgG for transfusions.
markjeep51
in
CLL Support
5 years ago
Advise please from anyone who’s had IVIG infusions as part of IVF/FET treatment
Hi all, Before we head into FETs with our PGS blasts I had the ‘Chicago’ blood test for NK cells amongst other things. The result suggested I had marginally raised NK cells (1.12% vs < 1% which is normal). When my blood was tested for the best treatment to lower NK cells, IVIG was most effective. I have
Hi all, Before we head into FETs with our PGS blasts I had the ‘Chicago’ blood test for NK cells amongst other things. The result suggested I had marginally raised NK cells (1.12% vs < 1% which is normal). When my blood was tested for the best treatment to lower NK cells, IVIG was most effective. I have
Hidden
in
Fertility Network UK
5 years ago
Surgery
Another question. Any one have surgery while on the high dose prednisone I was supposed to have spinal fusion and catarac surgery
Another question. Any one have surgery while on the high dose prednisone I was supposed to have spinal fusion and catarac surgery
Libertylane
in
PMRGCAuk
5 years ago
Rife Ultrasonic therapy cured my platelet crashes by killing the organisim that I caught when I traveled abroad that caused my ITP
I want to say to the researchers that I was cured from a 7 month serious platlet crashing and every 2 weeks IVIG injection ITP ride within one month after a Sept 2017 Rife treatment and 2 weeks of Parasite medication. Rife is ultrasonic waves (like an opera singer breakes a glass with voice) that target
I want to say to the researchers that I was cured from a 7 month serious platlet crashing and every 2 weeks IVIG injection ITP ride within one month after a Sept 2017 Rife treatment and 2 weeks of Parasite medication. Rife is ultrasonic waves (like an opera singer breakes a glass with voice) that target
CDmom
in
ITP Support Association
5 years ago
"Sticky Blood" - Antiphospholipid Syndrome, POTS, Chronic Fatigue Syndrome and Fibromyalgia - The Dysautonomia Conference
by Cort Johnson | Aug 15, 2018 | This blog is part IV in a series of blogs covering the issues presented at the 2018 Dysautonomia International Conference in Nashville, Tennessee. APS and POTS and ME/CFS This is the fourth blog on issues presented in the 2018 Dysautonomia International Conference.
by Cort Johnson | Aug 15, 2018 | This blog is part IV in a series of blogs covering the issues presented at the 2018 Dysautonomia International Conference in Nashville, Tennessee. APS and POTS and ME/CFS This is the fourth blog on issues presented in the 2018 Dysautonomia International Conference.
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
5 years ago
Nine months post chemo visit
So here I am. Back at what will soon be the largest blood cancer centre in Europe. The queue for the blood test today made you think the extra patients are already here!. And I suppose I only have myself to blame going on so much about how UCLH have saved my life, and how good the A and E is, not
So here I am. Back at what will soon be the largest blood cancer centre in Europe. The queue for the blood test today made you think the extra patients are already here!. And I suppose I only have myself to blame going on so much about how UCLH have saved my life, and how good the A and E is, not
AdrianUK
in
CLL Support
5 years ago
What is Cellulitis?
I just got the second series of my pneumonia shot and second series of the new shingles shot, both in the same arm. By that same evening, my arm was swollen, I got the chills so bad I couldn’t get warm. I frantically searched for our heating pad to get warm. I couldn’t stand up straight because my lower
I just got the second series of my pneumonia shot and second series of the new shingles shot, both in the same arm. By that same evening, my arm was swollen, I got the chills so bad I couldn’t get warm. I frantically searched for our heating pad to get warm. I couldn’t stand up straight because my lower
awoodiette
in
CLL Support
5 years ago
Rosa Buffon Center Discharge
Hi Just had my follow up appointment with Dr Mallam at the Rosa burden centre Bristol. First of all she puts you at ease straight away and is very easy to communicate medical problems. We went through everything thing from tremors in hands and legs and that I use the distraction procedure to combat
Hi Just had my follow up appointment with Dr Mallam at the Rosa burden centre Bristol. First of all she puts you at ease straight away and is very easy to communicate medical problems. We went through everything thing from tremors in hands and legs and that I use the distraction procedure to combat
Mygeordiebud
in
Functional Neurological Disorder - FND Hope
5 years ago
Follicular Lymphoma Patient: 8-Year Treatment Experience
In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 4 years, she progressed after R-CHOP (6 cycles), bendamustine/rituximab
In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 4 years, she progressed after R-CHOP (6 cycles), bendamustine/rituximab
wmay13241
in
Non Hodgkin's Lymphoma Friends
5 years ago
I’m at my wits end
Hi I’m 26 and was diagnosed with FND approximately 2 and a half years ago. Initially I was admitted to hospital for 6 weeks of testing. The one thing they did find was calcification in my basal ganglia(responsible for initiating movement). During that stay it was believed I had stiff person syndrome
Hi I’m 26 and was diagnosed with FND approximately 2 and a half years ago. Initially I was admitted to hospital for 6 weeks of testing. The one thing they did find was calcification in my basal ganglia(responsible for initiating movement). During that stay it was believed I had stiff person syndrome
Stanleyleonard12
in
Functional Neurological Disorder - FND Hope
5 years ago
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