Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1
  • 2

TOPIC:

ITP and Covid-19 4 months 2 weeks ago #70253

  • thomaskm
  • Offline
  • Male 69 Diag. April 2017 in ER with Petechiae from knees to toes 4 oral cheek blood blisters 3000 count. 3-IVIG rescues, 4, 4 day 40mg Dexamethadrone blasts. Best read 416,000 11/24/2020 (Covid+ bump) On Nplate maintenance every 3 weeks
  • Posts: 52
  • Karma: 1
  • Thank you received: 10
Of course it had to be me that got to try out the Covid-19 along with chronic ITP. I have not posted in over a year as I have been well maintained with minimum Nplate injections weekly for over a year averaging 160+, then every 2 weeks at 140+ for a year, and this August moved to Nplate every 3 weeks at a steady 120-135 range. My Hemo and I are striving for "minimum" Nplate while maintaining 120+ and it has been working. Nplate is known to be totally out of your system in 28 days so the 3 week interval insures I have some Nplate on board during my treatment cycle. It is also of note that when I acquired a sinus infection 2 years ago I pegged a 217 on Amoxicillin. On 11/7/2020 I awoke with throat clearing phlegm, later in the day I spiked a 101.5 fever. The next day the body aches hit, my eye muscles got sore and stiff and had a productive cough. Monday I made an appointment at the local Covid-19 testing center. My wife and I saw a Dr., were tested, and given Augmentin to address his diagnosis of sinus infections. 5 days later I got the call I was Covid-19 positive. ( yes we were careful). The call came 4 days ahead of my next Nplate injection. I notified my Hemo, my treatment was cancelled, and I could not get a blood draw or injection at the cancer center I use until the CDC required 14 day quarantine lapsed. I was advised to monitor for bruising, petechia, and report to an emergency room if ITP symptoms appeared, they did not. This Tuesday I was ushered into the "Covid" room for my blood draw which came back with a 416! After 5 weeks with no Nplate injection! It was reassuring that my immune system kicked Rona's azz ( it was a rough trip with 2 weeks of fever, cough, and aches) and was diverted from attacking my platelets. I fully expect to drop numbers over the coming weeks and return to my 3 week injection cycle as my T-cells are no longer distracted by Covid. I do hold out hope that they may have been retrained! This trip was made harder by the open hernia repair I had on 10/27 where the surgeon basically destroyed the inguinal nerve leading to my left testicle so every cough was like a groin kick. The November from hell!
The following user(s) said Thank You: StrayKat88

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 2 weeks ago #70263

  • MelA
  • Offline
  • Posts: 776
  • Karma: 2
  • Thank you received: 251
Bless your heart - hope you have a quick and smooth recovery!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: thomaskm

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 2 weeks ago #70267

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1814
  • Karma: 7
  • Thank you received: 517
Thomas
Sounds horrendous hope you soon return to normal. Keep us up to date with your counts
The following user(s) said Thank You: thomaskm

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 2 weeks ago #70269

  • poseymint
  • Offline
  • Posts: 594
  • Karma: 1
  • Thank you received: 173
Thanks for sharing your story Thomas. Very interesting and great info for everyone. Hope you are feeling better, good you stayed out of the hospital!
I also get high platelet counts when I have a viral infection. As you said, your numbers might stay up without Nplate or with a smaller dose. That happened to me once, my dose was reduced after a virus brought my numbers to 395. My counts fell back to 50 but I stayed on the reduced dose of Nplate for 3 years.
The following user(s) said Thank You: thomaskm

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 2 weeks ago #70271

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1814
  • Karma: 7
  • Thank you received: 517
The fickleness of ITP. My count heads for the gutter whenever I contract a virus.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 2 weeks ago #70285

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
Ive been curious about the relationship, if any, between Covid infection and ITP. My ITP came out of nowhere back in July. Im 54. I was and am an "essential worker" so I have not participated in any lockdowns(apart from the 7 weeks I was in hospital for 10 days and out of work because of ITP in july and august) although I have always masked and have curtailed significantly my contact with other people and groups of people. Anyway, my sister has been certain that my ITP is a result of asymptomatic Covid. I laughed at her when she suggested it and although I am dubious this is interesting. Would be nice I suppose if that were the case in my case and being clear of covid the reason my platelet levels have been well over 150 averaging around 220 the last 2 and a half months. I did have the 3 retux infusions back in july/aug and was receiving weekly Nplate up until 3 weeks ago. Who knows with ITP.

ITP, you're incorrigible

www.ncbi.nlm.nih.gov/pmc/articles/PMC7501509/

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 2 weeks ago #70286

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1814
  • Karma: 7
  • Thank you received: 517
Were you tested for Covid antibodies when you were in hospital?

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 2 weeks ago #70294

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
No. In fact other than hourly temp and blood oxygen checks along with BP there was no testing for covid. Patients, in the cancer ward at least, were told that we didnt have to wear masks as patients. The hospital staff all had masks on.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 2 weeks ago #70296

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1814
  • Karma: 7
  • Thank you received: 517
Surely when you were admitted to hospital you had blood tests to screen for conditions that can lead to ITP, ie immunology and virology screens.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 2 weeks ago #70299

  • thomaskm
  • Offline
  • Male 69 Diag. April 2017 in ER with Petechiae from knees to toes 4 oral cheek blood blisters 3000 count. 3-IVIG rescues, 4, 4 day 40mg Dexamethadrone blasts. Best read 416,000 11/24/2020 (Covid+ bump) On Nplate maintenance every 3 weeks
  • Posts: 52
  • Karma: 1
  • Thank you received: 10
Asymptomatic Covid in people over 50 is rare. My diabetic wife had a milder case but she had all the symptoms including loss of taste but just a one day fever. I would bank your retux treatments bounced your counts up.... period.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70300

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1698
  • Karma: 10
  • Thank you received: 244
Hey Thomas. Long time no see, LOL

I can corroborate the covid19 and platelet count affect. Its a long story but I just had diarrhea and stomach Flu feelings for a couple of days. Then, 5 to 6 weeks later had count check and it was unusually high for me (on 12.5mg Promacta). A 73 instead of 50 +/- 5.

LoL, 10 weeks later was back to my normal count - a 51.
The following user(s) said Thank You: thomaskm

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70304

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
Oh yes. That first hospital stay I had more blood draws in 6 days than I have had in my entire life before hand times 3. That is not an exaggeration. All of the tests for potential causes were performed. i dont believe however that the covid antibody test was performed. They went over each test result with me and what each was meant to rule out. Covid antibody test was not mentioned as I recall.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70305

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1814
  • Karma: 7
  • Thank you received: 517
Do you think you could get one done next time you have a blood draw? Would be nice to know one way or another.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70307

  • JJ
  • Offline
  • Posts: 172
  • Thank you received: 59
In my experience the only people tested for covid antibodies in the UK are those on a trial of some sort. Apart from that you can pay for one privately. In any case it's doubtful if antibodies would still be detectable after all this time, and T cell immunity is expensive to test for so not done.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70308

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1814
  • Karma: 7
  • Thank you received: 517
Too early to tell how long antibodies last.
NY times last week printed "Eight months after infection, most people who have recovered still have enough immune cells to fend off the virus and prevent illness, the new data show. A slow rate of decline in the short term suggests, happily, that these cells may persist in the body for a very, very long time to come". Research paper@ www.biorxiv.org/content/10.1101/2020.11.15.383323v1.full which admittedly has not yet been peer reviewed

My T cell immunity was tested at the outset and repeated at least once if not twice over the last 6 years.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70309

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
but after having received the 4 Retuximab infusion treatments july/august would that perhaps skew the results anyway since that treatment pretty much kneecaps ones immune system for 6 months or so?

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70310

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
Im scheduled to next meet with my Hemo and get my next blood test in January. I will ask him about the Covid antibody test and what is known about a possible correlation. I was supposed to go in for just a CBC every two weeks before that next appointment but I havent done so since the first week of november when I received that last Nplate injection. Work has prevented me from having time off. Just as well. It is helping me to break from "where will my levels be the next CBC?" anxiety and worries that I initially had. now im pretty much over it and dont even think about it.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70312

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1814
  • Karma: 7
  • Thank you received: 517
I'd forgotten you had Rituximab which targets CD20 I don't know if that is involved in Covid or if Rituximab has any effect on covid antibodies. Be interesting to see what your haemo says.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70313

  • JJ
  • Offline
  • Posts: 172
  • Thank you received: 59
I know how long my son's antibodies lasted because he was on a trial and was tested regularly.
T cell general testing is different from testing for a particular virus which they obviously can do because they do so when testing a vaccine, but they don't do it routinely.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70316

  • EmilyK
  • Offline
  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
  • Posts: 454
  • Thank you received: 67
Hey all! Been a while since i have checked in. So far all has been good on the ITP front. No meds and safe levels on platelets, usually in the 50's. Wondered if there has been any discussion about risks of the covid vaccine to us with ITP. I have no other issues but do not want to do anything to risk upsetting my platelets. Feel very fortunate that i have been ok without medication for some time now. Thanks. Love to all.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70317

  • MelA
  • Offline
  • Posts: 776
  • Karma: 2
  • Thank you received: 251
When the time comes I will be in touch with my hematologist and get his opinion. Feel he should know about ITP & the vaccine. Not sure if I will talk with my immunologist too - he had told me not to get the newest shingles vaccine as it had not been studied on those with autoimmune disorders.

Happy to hear your count is stable!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: EmilyK

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70318

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1814
  • Karma: 7
  • Thank you received: 517
The vaccine is so new that we cannot know everything about it.
What I know Is a vaccine may drop my count (the annual flu one never does, nor did my HepB booster).
However a virus will almost certainly drop my count, usually down to single figures requiring Prednisolone rescue treatment, therefore I will be having the Coronavirus vaccination.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 4 months 1 week ago #70324

  • EmilyK
  • Offline
  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
  • Posts: 454
  • Thank you received: 67
I very much appreciate your perspective! Hugs!
The following user(s) said Thank You: mrsb04

Please Log in or Create an account to join the conversation.

ITP and Covid-19 3 months 4 weeks ago #70355

  • thomaskm
  • Offline
  • Male 69 Diag. April 2017 in ER with Petechiae from knees to toes 4 oral cheek blood blisters 3000 count. 3-IVIG rescues, 4, 4 day 40mg Dexamethadrone blasts. Best read 416,000 11/24/2020 (Covid+ bump) On Nplate maintenance every 3 weeks
  • Posts: 52
  • Karma: 1
  • Thank you received: 10
As I anticipated in 3 weeks I dropped from the record 416 down to this Tuesdays 160, I did not receive a shot. My Hemo agreed delaying my Nplate therapy more than 2 weeks was ill advised given my drop rate. I will likely return to my normal 3 week cycle of low dose Nplate for the foreseeable future after my next draw results. Covid gave me a heck of a ride, time to step off of it. Thanks for all your well wishes and interest in my experience!

Please Log in or Create an account to join the conversation.

ITP and Covid-19 3 months 4 weeks ago #70356

  • gozorakgogo
  • Offline
  • Posts: 97
  • Thank you received: 15
you have had a hell of a year friend. Better year ahead...it has to be
The following user(s) said Thank You: thomaskm

Please Log in or Create an account to join the conversation.

ITP and Covid-19 3 months 3 weeks ago #70359

  • Chad89
  • Offline
  • Diagnosed with ITP in 2007 at age 18.
  • Posts: 54
  • Thank you received: 11
Speaking of the vaccine, I will be receiving the first part of it tomorrow and the second round on Jan 6th. My Hemo attended Faucis conference and they advised that people on immunosuppressants should be able to take it and they advised that even if it only offers some of the protection that it is better than nothing. So I will let you know how it goes. Hopefully I live lol.
The following user(s) said Thank You: StrayKat88

Please Log in or Create an account to join the conversation.

ITP and Covid-19 3 months 3 weeks ago #70361

  • MelA
  • Offline
  • Posts: 776
  • Karma: 2
  • Thank you received: 251
Thanks for letting us know Chad! Look forward to hearing how things go! I haven't heard anything about getting one so assuming it isn't being offered in my state yet to us old folks or those high risk.

PS - heard on the national ABC news tonight that the 2nd dose was for those 65 years of age & older. Hadn't heard that before so don't know if true or not.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

ITP and Covid-19 3 months 3 weeks ago #70362

  • Chad89
  • Offline
  • Diagnosed with ITP in 2007 at age 18.
  • Posts: 54
  • Thank you received: 11
At least here in California for the phizer shot it’s two for everyone. About 3 weeks apart.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 3 months 3 weeks ago #70363

  • b2h
  • Offline
  • Posts: 136
  • Thank you received: 47
A couple interesting articles about B-cell depletion, ITP, vaccines and Covid-19.

ashpublications.org/blood/article/122/11/1946/31886/The-effect-of-rituximab-on-vaccine-responses-in

In discussion:

The impact of rituximab on the immune response to vaccination has been examined in patients with malignancy and rheumatic disease. In patients with lymphoma previously treated with high-dose chemotherapy, rituximab was associated with an inadequate antibody response to pneumococcal vaccine but a preserved response to tetanus toxoid and Hib vaccines.44  The addition of rituximab to chemotherapy in 11 patients with hematological malignancies resulted in a failure to respond to the H1N1 vaccine,14  and low rates of seroconversion were observed in 14 patients with lymphoid malignancies; however, responses were not significantly different from control patients who did not receive rituximab.45  In one study of patients with rheumatoid arthritis (n = 14), rituximab was not associated with an impaired antibody response to 2 of 3 influenza virus antigens even during profound B-cell depletion15 ; whereas in another study (n = 17) a poor response to the influenza vaccine was observed.10  Cellular immune responses to influenza vaccination was preserved in rituximab-treated patients with rheumatoid arthritis while humoral immunity was severely impaired.46  In another report, both humoral and cellular responses were found to be compromised.47  In summary, previous studies have focused on patients with underlying hematological malignancies who had received rituximab in addition to myelosuppressive chemotherapy14,17,44,45  or patients with rheumatoid arthritis10,11,15  in the context of biologic agents and other immunosuppressant medications. In general, these studies suggested that antibody responses were compromised. Ours is the first study to assess the impact of rituximab on immune responses in ITP controlling for disease stage and timing of rituximab exposure.

In summary, rituximab was associated with an impaired antibody response to pneumococcal and Hib vaccines during the period of B-cell depletion. Antibody levels against Hib did not indicate functional bactericidal activity for all patients. B-cell depletion resulted in a loss of the “burst” in preplasma cell blasts that is expected after vaccinations, which may explain why specific antibody production was reduced. The overall reduction in antigen presenting cells may result in impaired T-cell function. Our findings provide insight into the mechanisms of humoral and cellular immune suppression caused by rituximab in patients with ITP.

onlinelibrary.wiley.com/doi/full/10.1111/cei.13495

This suggests that it may be possible to undertake dose interruption to maintain inflammatory disease control, while allowing effective vaccination against SARS‐CoV‐29, if and when an effective vaccine is available.

It appears that the innate immune response, and perhaps later anti‐viral CD8 T cell responses, could eliminate the SARS‐CoV2 before significant antibody responses have developed [20, 28, 33] (Fig. 1), suggesting that most MS treatments that largely exhibit limited persistent effects on the innate immune and CD8 T cell responses would have limited influence on COVID‐19. SARS‐CoV‐2 is eliminated by the majority of people with MS and other autoimmunities on immunotherapies, without significant consequences

….the vast majority of people treated with CD20 B cell‐depleting agents in MS recover from COVID‐19

It is evident that there is a lower frequency of seroconversion and reduced titre to 23‐valent pneumococcal polysaccharide vaccine (23‐PPV) (Fig. 2a,b) with or without a booster vaccine (Fig. 2c), keyhole limpet haemocyanin (KLH) neoantigen (Fig. 2d), tetanus toxoid vaccine (Fig. 2e,f) and seasonal influenza vaccines ….The relatively poor vaccine response in people treated with ocrelizumab was predictable, and consistent with that seen following vaccination in people treated with rituximab, suggesting that this is an issue for all classes of anti‐CD20 antibodies used in the treatment of cancer and autoimmune diseases.

Please Log in or Create an account to join the conversation.

ITP and Covid-19 3 months 3 weeks ago #70364

  • b2h
  • Offline
  • Posts: 136
  • Thank you received: 47
www.hematology.org/covid-19/ash-astct-covid-19-and-vaccines

Why might some hematology patients not respond to vaccines?

In order to generate optimal protective immunity following vaccination, intact host immunity is needed, particularly with respect to antigen presentation, B and T cell activation, and plasma B cell antibody generation. Therefore, hosts lacking functional adaptive immune cells may be unable to generate a fully protective immune response to a SARS-CoV-2 vaccine approved for use in the general population.

The following immunocompromised patient populations could have attenuated or absent response to SARS-CoV-2 vaccines:

- Primary and secondary immunodeficiencies involving adaptive immunity
- Splenectomy or functional asplenia [e.g., sickle cell disease]
- B cell directed therapies [e.g., blocking monoclonal antibodies against CD20 or CD22, bispecific agents like blinatumomab, CD19 or CD22-directed CAR-T cell therapies, BTK inhibitors]
- T cell directed therapies [e.g., calcineurin inhibitors, antithymocyte globulin, alemtuzumab]
- Many chemotherapy regimens
- High-dose corticosteroids (μ20 mg per dose or >2 mg/kg/day daily prednisone or equivalent)
- Hematopoietic cell transplantation (HCT), especially within the first 3-6 months after autologous HCT and often longer after allogeneic HCT
- Underlying aberrant immunity [e.g., graft-vs.-host disease (GVHD), graft rejection, absent or incomplete immune reconstitution, neutropenia ANC<500/μL, lymphopenia ALC<200/μL]

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
  • 2

BBB Cleveland logo Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo