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Any advice greatly appreciated🙏
Apologies for the long post. Hope everyone had a good Christmas and best wishes for a happy & healthy New Year head. Has anyone undertaken a three week residential pain management course in Bath? Am I right in thinking that it is primarily physio and psychology based and is there any medication input
Apologies for the long post. Hope everyone had a good Christmas and best wishes for a happy & healthy New Year head. Has anyone undertaken a three week residential pain management course in Bath? Am I right in thinking that it is primarily physio and psychology based and is there any medication input
RHYN
in
Pain Concern
3 years ago
Covid 19 Shot and ITP
Has anyone else in this group develop ITP after getting their Covid 19 shot? One week after getting my first Pfizer Covid 19 shot I developed ITP. My count dropped to 3,000 and was hospitalized for a week getting a platelet transfusion and IVIG treatments. After 8 months of treatment I am now considered
Has anyone else in this group develop ITP after getting their Covid 19 shot? One week after getting my first Pfizer Covid 19 shot I developed ITP. My count dropped to 3,000 and was hospitalized for a week getting a platelet transfusion and IVIG treatments. After 8 months of treatment I am now considered
hiltonhead
in
ITP Support Association
3 years ago
Headaches
I was diagnosed with ITP 8 months ago after I got my first Covid 19 shot. A week after the shot I had bruising all over my arms and stomach. I went to my doctor and my platelet count was 3,000. I was put in the hospital for a week and given a platelet transfusion and IVIG treatment. Since then I
I was diagnosed with ITP 8 months ago after I got my first Covid 19 shot. A week after the shot I had bruising all over my arms and stomach. I went to my doctor and my platelet count was 3,000. I was put in the hospital for a week and given a platelet transfusion and IVIG treatment. Since then I
hiltonhead
in
ITP Support Association
3 years ago
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Does dexmethsone work quickly?
Hi guys just had a relapse and ended back in hospital with a count of 2. I had come off prednisone and had two doses of IVIG one month apart so now had 2 doses of IVIG 2 days apart and taking 40mg dexmethsone has dex worked quickly for anyone?
Hi guys just had a relapse and ended back in hospital with a count of 2. I had come off prednisone and had two doses of IVIG one month apart so now had 2 doses of IVIG 2 days apart and taking 40mg dexmethsone has dex worked quickly for anyone?
Loftyc
in
ITP Support Association
3 years ago
IVIG seems to have shared some antibodies from previous COVID patient
This has been discussed before here, but want to add my bit. I have had three Moderna mRNA jabs ( last on 10/15/21) and have been getting IVIG for ITP (immune system gobbling up platelets) dx 7/21. I am also in the US LLS study, and as mono Venclexta patient, have been producing some level of antibodies
This has been discussed before here, but want to add my bit. I have had three Moderna mRNA jabs ( last on 10/15/21) and have been getting IVIG for ITP (immune system gobbling up platelets) dx 7/21. I am also in the US LLS study, and as mono Venclexta patient, have been producing some level of antibodies
E-Lynn
in
CLL Support
3 years ago
Any other parents of very young children here? Searching for hope.
Hello everyone, I’m new to the board and wanted to introduce myself. I’m the mother of a 5 year old boy on the long road of recovery from antibody-negative autoimmune encephalitis. A quick summary of our case history: this summer my husband and I started noticing our son’s increasingly odd behavior
Hello everyone, I’m new to the board and wanted to introduce myself. I’m the mother of a 5 year old boy on the long road of recovery from antibody-negative autoimmune encephalitis. A quick summary of our case history: this summer my husband and I started noticing our son’s increasingly odd behavior
Harper1
in
Encephalitis International
3 years ago
Spike Protein AB Test - What color Vial
I attended the hospital today for my monthly IVIG infusion. Whilst there, I also have my regular blood draw. Included in the blood draw today was a Covid Spike Protein Antibody Test. It was not known to the nurses what color vial should be used. Because it was the weekend there was no one at Pathology
I attended the hospital today for my monthly IVIG infusion. Whilst there, I also have my regular blood draw. Included in the blood draw today was a Covid Spike Protein Antibody Test. It was not known to the nurses what color vial should be used. Because it was the weekend there was no one at Pathology
RobertCLL
in
CLL Support
3 years ago
Financial assistance for IVIG
Hi. Is there any financial assistance for IVIG treatment in USA?
Hi. Is there any financial assistance for IVIG treatment in USA?
pragnar
in
CLL Support
3 years ago
Spinal fusion & bone thining
Hi guy's. I recently under went a spinal fusion to try & fix a painful spinal fracture from early March, 2 weeks later I am still having the same pain when I sit or stand for too long. My Onc has already said my hips are showing wear and tear + thining but has yet to put me on any medication for this
Hi guy's. I recently under went a spinal fusion to try & fix a painful spinal fracture from early March, 2 weeks later I am still having the same pain when I sit or stand for too long. My Onc has already said my hips are showing wear and tear + thining but has yet to put me on any medication for this
Chubby42
in
Advanced Prostate Cancer
3 years ago
Calmare Therapy/Scrambler Therapy
Has anyone tried Calmare or Scrambler Therapy for Neuropathic nerve pain post surgery after having a spinal fusion carried out for scoliosis? Been reading about it online, not available in the UK but it is in Ireland, Italy and the US.
Has anyone tried Calmare or Scrambler Therapy for Neuropathic nerve pain post surgery after having a spinal fusion carried out for scoliosis? Been reading about it online, not available in the UK but it is in Ireland, Italy and the US.
RHYN
in
Pain Concern
3 years ago
A 4th Moderna shot for the Immunocompromised?
A March 2016 CAR-T treatment permanently damaged my wife's bone marrow such that she does not produce immunoglobulins. She gets an IVIG infusion every 2 months. She has had 3 Moderna shots so far, the latest being in August 2021. My questioln is what is the guidance for a 4th Moderna shot for immunocompromised
A March 2016 CAR-T treatment permanently damaged my wife's bone marrow such that she does not produce immunoglobulins. She gets an IVIG infusion every 2 months. She has had 3 Moderna shots so far, the latest being in August 2021. My questioln is what is the guidance for a 4th Moderna shot for immunocompromised
wmay13241
in
CLL Support
3 years ago
IVIG infusion
When do patients get started on IVIG infusion please?
When do patients get started on IVIG infusion please?
Vocals
in
CLL Support
3 years ago
IViG
Has anyone achieved remission on IVIG.? Also can I expect to feel better after these infusions?
Has anyone achieved remission on IVIG.? Also can I expect to feel better after these infusions?
Loftyc
in
ITP Support Association
3 years ago
Thoughts on cycling with ARGC or doing surrogacy?
So my immune markers are very high. Have tried alot of different medications to get them under control and they have gotten worse. My local clinic has suggested we consider surrogacy. Although I know ARGC specialises in this type of issue. So I'm torn as to which path to choose. With ARGC I'm conscious
So my immune markers are very high. Have tried alot of different medications to get them under control and they have gotten worse. My local clinic has suggested we consider surrogacy. Although I know ARGC specialises in this type of issue. So I'm torn as to which path to choose. With ARGC I'm conscious
letro112
in
Fertility Network UK
3 years ago
Buprenorphine Thank-you
Words Cannot express the gratitude I have for all of you .We are part of a unique family that only we understand. You all have other lives outside of this site and golly gosh we often have other serious health issues and work and family commitments I’m sorry I have not responded early unfortunately
Words Cannot express the gratitude I have for all of you .We are part of a unique family that only we understand. You all have other lives outside of this site and golly gosh we often have other serious health issues and work and family commitments I’m sorry I have not responded early unfortunately
Shumbah
in
Restless Legs Syndrome
3 years ago
IVIG and Covid Vaccinations
Is there a recommendation of the time that should be allowed between a Covid jab and a IVIG infusion?
Is there a recommendation of the time that should be allowed between a Covid jab and a IVIG infusion?
RobertCLL
in
CLL Support
3 years ago
BK virus and Low WBC
Hi - my dad received a kidney transplant about 4 months ago and at first everything looked great. But recently it showed he had the BK virus. First they lowered his CellCept dose and two weeks later the virus had increased. So they removed CellCept completely and his virus levels were coming down. However
Hi - my dad received a kidney transplant about 4 months ago and at first everything looked great. But recently it showed he had the BK virus. First they lowered his CellCept dose and two weeks later the virus had increased. So they removed CellCept completely and his virus levels were coming down. However
Nyc147
in
Kidney Transplant
3 years ago
Covid antibodies lost in short time periode
Wanted to share my experience with vaccination : After two times Biontech I had 1036 AU/ml (< 50 negativ) in mid of May. On Thursday this week I had my 6 months check and asked to add Covid antibodies just to know when to get a 3rd booster vaccination. The new value is 22 only. So I have lost nearly
Wanted to share my experience with vaccination : After two times Biontech I had 1036 AU/ml (< 50 negativ) in mid of May. On Thursday this week I had my 6 months check and asked to add Covid antibodies just to know when to get a 3rd booster vaccination. The new value is 22 only. So I have lost nearly
Reinhard
in
CLL Support
3 years ago
Plavix and ITP
I was diagnosed with ITP a month ago. Platelets of 1. I was on Plavix and baby aspirin along with Zoloft. Was anyone on the same or similar medications when diagnosed. Initially my Dr thought the medication caused the low platelets. I have been off them for a month though and at this point it seems
I was diagnosed with ITP a month ago. Platelets of 1. I was on Plavix and baby aspirin along with Zoloft. Was anyone on the same or similar medications when diagnosed. Initially my Dr thought the medication caused the low platelets. I have been off them for a month though and at this point it seems
joecirillo
in
ITP Support Association
3 years ago
Followup to my post 8 months back, sudden jaundice and hemolytic anemia
I had posted 8 months back about sudden onset of jaundice and hemolytic anemia. So my brother was tested with ANA and complement factors for SLE and was diagnosed as questionable lupus but hematolgist believed it was lupus although my brother didn't have any physical symptoms or manifestations of lupus
I had posted 8 months back about sudden onset of jaundice and hemolytic anemia. So my brother was tested with ANA and complement factors for SLE and was diagnosed as questionable lupus but hematolgist believed it was lupus although my brother didn't have any physical symptoms or manifestations of lupus
Akam
in
Hughes Syndrome APS Forum
3 years ago
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