APS people

[jetjetjet]

APS people - How has any of you that have gotten the vaccine . Is there any info out there pro or con about getting the vaccine .

[MaryF Administrator]

Hi have a look at these two post from GHIC, in case this is of any help!

ghicworld.org/covid-vaccine...

facebook.com/TheGrahamHughe...

MaryF

[thestorm]

Hi my dear friend, here is a site from the great UK, that may add some light to your APS tunnel. Not the "Lincoln", tunnel to NY, my friend, LOL. Interesting, when you type in APS to search the web, there is some interesting coincidences with it, used to developing the Vaccines. Have a look, when you feel like reading. Stay well, keep moving, and posting. Much Love, and blessings Thestormy sunshine Xxxx

aps-support.org.uk/self-help/covid-19-information

[jetjetjet in reply to thestorm]

Hi Buddy I am still looking at this - i have so many dia. medical problems - i wil have to take some time with a doc. or try my Hemo .BUT her and I don't always see eye to eye on things ,?? Mary put on a couple of good sites , One in my mind was the video with with a specialist from GHIC and The gal that was doing the questions from people with disorders that are questionable But I am classified 1B An Dartmouth Hitchcock has notified me and I sent them back a question of was this notice they sent actually a signing up for the shot . This is the main hospital i go to for my specialists and they number 27 now . and they are in 4 different hosp here in NH . so i SHOULD be able to get them to talk . Most of the number of 27 are doc's and some are special testing places but I always have to go back to them no matter which doc orders testing to be done , Having history going back is a good thing . But they come up when i run the list of my Doc's in Dartmouth . thanks to all again And you my Buddy are due for a long chat. sorry i have been off . Hug s they are free and they feel good . even on here .. Ha BBN

[Hidden]

Hey, I got the first dose about 4 days ago. Other then a runny nose and more fatigue then usual haven’t had any effects. I got the Pfizer vaccine.

[jetjetjet in reply to Hidden]

i got my contact info today - i will be sent an appointment Date and time Via computer and a phone call . the 6 to 7 week wait even though i am 1B . So in the meantime i can keep an eye and ear open for what is going on with others pro & con.??

[Cinn987]

Apsuk have asked the MRHA to advise if pfizer/Oxford are suitable for APS patients. I'm looking out for their response

[Jumper99 in reply to Cinn987]

APS support uk say that MRHA have said Pfizer vaccine is ok for APS.

[Cinn987 in reply to Jumper99]

Thankyou. No good to me though. Various allergies. I'm hoping it's better news for the Oxford. Stay well

[Jumper99 in reply to Cinn987]

Are your allergies to components of the vaccine or to other things at anaphylactic level?

[Cinn987 in reply to Jumper99]

Other things, various with anaphylactic response

[Jumper99 in reply to Cinn987]

I’m so sorry you suffer so much. I was checking as I get many allergies/intolerances but none quite as bad as anaphylactic yet (although if anyone ever gives me anything penicillin related again it might happen!). I hope the Oxford/AstraZeneca vaccine is ok for you.

[Cinn987 in reply to Jumper99]

Thankyou. Keep well and safe

[Ladydale in reply to Cinn987]

Should not have Pfizer if you have allergies

[MLNC]

I have had the Pfizer vaccine and my side effects were negligible, certainly less than APS-free colleagues. In our healthcare workplace, which is considered high risk, colleagues who have had the worst reaction were those who had previously tested positive to Covid antibodies. Who knows if there is a connection or if they complain more. 🤷

[Piscesdreamer]

I had my first dose of the Moderna vaccine on January 19th after all of my specialists were in agreement that I should get it. I had mild side effects. I got the chills about 6 hours after the shot. Just added a blanket and slept in socks. Felt a little spacey. My deltoid was sore for 2 days. I had little appetite, and was slightly gassy. All cleared up (except the tender deltoid) within 24 hours.

[Hidden]

Hi, I got Covid 2 weeks ago. My whole family did. Reminded me of a sinus infection. My INR needs to be monitored due to goes higher with Covid. I take vitamin D, C, zinc, trace minerals, cod liver oil and a few other supplements. I fasted and kept my carb level down to decrease inflammation. My symptoms where low fever for 2 days, muscle pain, headache, sneezing and sinus drainage. My daughter who likes her sugar, age 15, had it the worst and is still coughing. Sugar is hard on the immune system. We feel blessed.

[Ray46]

Not been given my date yet, but found some interesting differences between the Oxford and Pfizer vaccine advice in the UK regarding suitability if on anti-coagulation.

For Pfizer they say:

"Individuals receiving anticoagulant therapy or those with a bleeding disorder that would contraindicate intramuscular injection, should not be given the vaccine "

In contrast for Oxford:

"COVID-19 Vaccine AstraZeneca should be given with caution to individuals with thrombocytopenia, any coagulation disorder or to persons on anticoagulation therapy"

So one is "should not" and one is "should with caution". On the other hand there are folks on this thread who have had Pfizer, and the GHIC advice is basically "have whichever is offered".

There is much uncharted territory on the vaccine path, but on the other hand the covid path looks pretty rough and is still uncharted as to long term effects...

Reference links:

gov.uk/government/publicati...

gov.uk/government/publicati...

[dottiedoris]

I’ve had the Pfizer vaccine. Had nothing more than a sore arm and a mild headache for a couple of days. I too have APS & multiple allergies plus hashimotos disease. If your allergies are severe then the Oxford vaccine is recommended but think they’re only giving that out with severe allergies at the moment, which has to be confirmed by a Dr or GP

[jetjetjet]

Thanks people i am still unsure of what I should be doing , I have so many other health issues Best have them at hand a doctor with some times to go over them. then a decision from there . Thanks again .

[InSpain in reply to jetjetjet]

Hi Jet

I have been refused the vaccine after my medical team met. I too like you have many complicated health problems and life threatening allergies. I am not allergic to anything in the vaccines that I know of, however, my team feels that it would be too greater risk for me. Plus I am currently immune suppressed.

I can only comment on myself personally and would suggest that you take medical advice from your main consultant. I believe that in doing so you, like me, will be able to make an informed decision.

So here I am in Spain reaching almost 12 months of lock down. Let's hope that the virus starts to calm down as I'm beginning to get itchy feet and want to go out!

Best wishes from here In Spain.

[kiminabmw in reply to InSpain]

Hello InSpain, how are you doing? You and I messaged back and forth a while ago, my Nephew (so far) has survived CAPS, starting in May 2019. He has had a Dialysis type Catheter sewn in his chest since then, but is hoping to have it removed in February. He had Plasmapheresis every 2 weeks for over a year, then they spread it to every 3 weeks, then every 4 weeks and now he hasn't had Plasmapheresis for 8 weeks and is doing OK. His platelets are dropping, but I think that could be related to being on a steroid for 20 months straight, and cellcept and he had a Rituxin (Rituximab) infusion in October 2020. I pray they don't get the catheter removed and he has another incident. I hope you are doing well. Kim

[InSpain in reply to kiminabmw]

Hi Kim

Lovely to hear from you. I'm glad that your Nephew is progressing.

2020 was a bit of a bad year health wise for me. It started by being told that my kidneys are failing and that they aren't too optimistic about the future. I have also been placed on the liver transplant list.

Then in April I fell backwards against the corner of my bedside table. I fractured two ribs which punctured my lung in two places. I had to have emergency surgery to stabilize the pneumothorax.

Then in July after having had an MRI scan it showed that I have had an infarction of the spinal cord, caused by a clot. This has affected both legs, my left arm, my bladder and bowels.

Then in October after long term steroid use I have developed further areas of osteoporosis and now have cataracts in both eyes.

Hopefully, 2021 will be better for everyone!

I have thought about you and your Nephew often. I am so happy that you have been able to give me some positive news on his progress.

Best wishes

Mary Anne

[kiminabmw in reply to InSpain]

Oh Mary Anne, 2020 indeed was not kind. Thank you for the update, and I am so sorry you have had such a struggle. I will keep you in my thoughts and prayers. If you wouldn't mind sharing any updates in your health with me, and I will update you of how my nephew is doing as well. Please take care!!!

Kim

[InSpain in reply to kiminabmw]

Thank you Kim.

[jetjetjet in reply to InSpain]

I go out to get food - medications -Doc. appointments other than that home is where i am - -i wear a mask -keep 6 + feet away all the time except when not possible . I use hand sanitizer on hands - door knobs entering house - door handles in car door , steering wheel basically anything i touch in car . wash hands often . .I am sanitized before entering house so house does remain clean and only gal across the hall comes in and my closest friend once every couple of weeks . So i am in discussions right now as we speak about where we will be going with these shots. I HAVE DEVELOPED PAIN AND WEAKNESS IN RIGHT ARM ,WRIST TO SHOULDER - WE WILL BE LOOKING At that today at 3:00 . Thanks for your reply

[InSpain in reply to jetjetjet]

Hope it's nothing serious. Take care and stay safe. 😷

[jetjetjet in reply to InSpain]

When i go to blood lab at Hosp. They screen everyone . before they are allowed to enter . One of the questions is joint or muscle pain . Arm pain just started yesterday morning so when i see doc this afternoon [ if they can muster one ] we have hopes to . this appointment is to straighten out covid application and which one to get , while we are straightening out the application for covid shots , we are trying for doc for arm . Maybe just getting to old and time for pasture. ! ha .?? The arm pain from wrist to shoulder?? aches , throbs , and no strength it seems - so covid related ?? I do know going out here this afternoon is going to be COLD , it is a standing 8 degrees with 30 mile and hour wind gusts.. chill factor will be sun zero in the sub teens . Things break and fall off at these temps .

h a

[albie360]

In the US no negative indications. I just got my first Moderna shot. Rheumatologist have no difinitive answers.

[rach1081985]

I've had pfeizee vaccine sore arm few days ..I work on frontline as well my health issues xx good luck

[jetjetjet]

as far allergies i am not sure which way they will want t go . I have this problem that when a doc changes one of my meds we try not to introduce OR change another for 2 months as it seems it takes that long to see what it will do to me most times it's my INR that suffers the most . It will go absolutely crazy , My hemo won't change the Warfarin Sulfate as my Anticoag. She has said time and time again because of my triple status and other medical issues that nothing else is strong enough and i wouldn't be safe . WELL the way my INR goes ???? So again i have 6 to 7 weeks and the woman i spoke to said i could buy myself more time But at least i can tell some of the Doc's i have registered and am on the 1B list .Great feedback from all of you and Thank You we are all different as we all know BUT we have to start somewhere . A few weeks back i was suffering from NO sleep hardly at all 3 hrs in 3 nights just starting to run on empty . Got that behind me So that concern is gone i don't know what i will do and now got much info from you people that have issues and what vaccine was used and side effects if any . all GOOD info to base a plan on for sure . Just had a crazy bout with the INR so Hopefully it wilsabilize so that isn't an issue BUT 6 weeks is a long time unless it comes one heck of a lot sooner . THANKS AGAIN TO ALL. BBN .

[jetjetjet]

so we have Oxford - Pfizer - Astrazeneca - Moderna and am i missing any ??

[Wittycjt in reply to jetjetjet]

Johnson and Johnson is suppose to be bringing A one shot dose to the table? Im not sure when...

[Hidden]

Do any of the vaccines prevent Covid? You can still spread Covid too? Right? How long do they last? Merck discontinued their vaccine and decided a therapeutic/treatment was better. I just had Covid. Type O blood and did well. How has everyone else done who has gotten Covid with APS?

[Raw57 in reply to Hidden]

I do not believe you can spread it if you do not have it. Moderna and Pfizer vaccines are 95% effective in prevention of Covid.

[Hidden in reply to Raw57]

If you research, the vaccines lessen the effects of Covid symptoms. It does not prevent from getting or spreading.

[Raw57 in reply to Hidden]

It does prevent it 95% of the time. And, if you are in the 5% that get it, the vaccine should lessen the symptoms.

[Hidden in reply to Raw57]

If I knew how to put a link to the manufacturer. I would. Please read the fine print. The virus is SARS cov2. The symptoms are Covid 19. This is why they say wear a mask and social distance after the vaccines. I am not against vaccines. I just wanted to share the fine print ❤️

[Raw57 in reply to Hidden]

I will be wearing my mask whenever I leave my house. I understand a mask is still necessary. I want to encourage everyone to get the vaccine if possible. Its very important.

[Hidden in reply to Raw57]

I had Covid. I am good for now 😊

[Lure2 in reply to Raw57]

Hi Raw,

I remember you once said that your son clotted all the time but he did not have APS. This was 2 years ago I think. Has your son got a diagnosed of APS today? I think you said you had primary APS?

[Raw57 in reply to Lure2]

no he does not have APS. He has Prothrombin 20210 Mutation (Factor II Mutation)

[Hidden in reply to Hidden]

They word it to prevent Covid 19, which is the symptoms of Sars. The virus is Sars. So it helps prevent symptoms.

[Raw57]

I had the Moderna vaccine 3 weeks ago. I had no issues. A tiny bit of soreness in my arm the second day was all I felt. I will get the second dose in a week.

[Raw57 in reply to Raw57]

I want to add I have severe allergies to pneumonia and flu vaccines. My allergist gave me the Covid vaccine confidently knowing it’s production is different from the flu and pneumonia vaccines.

[Bloodredroses]

I asked my Heamo professor ok if I had vaccine . I have APS negative INR . Rivaroxaban she said yes did not specify either vaccine . My G P said in NHS code our medical conditions are coded . That is the decider if one gets the invitation . I had thr pfizer in my regular hosp UCLH , I felt it was important to have it where my medical records were in case of reaction. I did get invitations to pop up vaccine centres . O filled the questionnaire YES NO replies in beforehand . Yes to anti coagulant . The volunteer vaccinator was a Surgeon . He had to go off and ask an on duty haematologist if it was ok as on anti coagulant . Rivaroxaban . He said yes . I got a cold sweat flash and feeling in throat for a second . I fanned myself drank water waited 30 mins . Ok home . Fine , small swollen lump for a week . 2 nd week lump went down into muscle . I slept all day for a week. 3 rd week ok. The relief is insane . I am still shielding. Even after immune 3 weeks I will still. Shield . I prob will until the R rate in London drops . I have to get dental work , and removal of a small benign basal cancer lump under the eye . Plus plastic repair NHS . I am putting it off until spring 2 nd vacc. . I had biopsy 4 years ago it was negative , glad I checked it again . Red vein lump . I feel so relieved will have had the 2 vaccine shots I hope by March when I get this day procedure and dental done. The anxiety of being cut in the mouth or face with Dentists and Drs close up is too much . I had teeth cleaned by hygienist last Feb , hygienists always wear masks my regular dentist was severely ill with Covid . I felt I dodged a bullet . Big tooth extraction after lockdown last year . I was so anxious as got closer to vaccine as shielding for 1 year . I’m so lucky and grateful for NHS Pfizer and AS Z and being English I could cry . I believe at Vacc centres they have Epi pens if reaction . UK bought 8 vaccine types right? the new 2 only 1 shot . Probably they will find the one that is suitable for very allergic. People or with conditions . Get more information as go along. Take heart . Stay safe . ♥️