Long covid and prosthetic issues - Hughes Syndrome A...

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Long covid and prosthetic issues

GinaD profile image
8 Replies

I have not been able to get the covid omicron booster because I am allergic to an ingredient in the Moderna and Phizer. But I have had 2 JandJs, and a mild case of covid a year ago. After a morning of sneezing 2weeks ago I tested and was surprised to see the dreaded pink line indicating I was positive for covid. I quarantined, took the antivirals, and tested negative ( double checked in 3days) after a very mild case. But then, after a strenuous afternoon of reading a book, as I turned from one chapter to another, I realized my knee was swollen. And stiff. And painful. And did not hold my weight well. In the past week I have rested, iced and consulted with orthopedic dr. No cause has been determined. There have been cases of post covid arthritis, but those cases are bilateral. For me, its the knee that was replaced back in 2018. Anybody else have post covid swelling in a replaced joint?

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GinaD
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8 Replies
B-A-Dreamer profile image
B-A-Dreamer

My sympathy to you.

I was also unable to have Pfizer or Moderna and was told by my GP last June that the UK government had approved Novavax for people in this situation. I had previously had three doses of Astra Zeneca after which my already low platelet had fallen by at least 25% each time and my already raised anticardiolipin and beta2-glycoprotein 1 had risen 3 or 4 hundred per cent. 9 months of searching online and writing to every possible body failed to find anyone who could say where and how Novavax is available in the UK (although the government is supposed to have bought several million doses last summer And it is listed as ‘approved’ on the government Covid website). By contrast, in Ireland and France, the governments’ Covid vaccination pages give a phone number for people who can’t take Moderna or Pfizer to call for an appointment for Novavax.

I had been extremely careful and avoided catching Covid until last week when a friend had a stroke and was given days to live and I went to see her in hospital. Despite being masked and using sanitiser, last Wednesday I had a positive test. After two days of coughing blood, I ended up in hospital with a platelet count of 5. After two nights of platelet transfusions but still coughing blood I was discharged and tested negative yesterday.

What was weird was that as long as I was negative, my ‘usual’ constant pains and near constant itching virtually disappeared. As I returned from positive to negative, the pains and itching are returning although not yet as bad as my pre-Covid levels. It is too soon to say whether there are longer term consequences.

I should add that the ingredient that I have been avoiding in Moderna and Pfizer vaccines is polyethylene glycol (PEG) after I was advised many years ago to avoid anything containing polyethylene. And I have been trying to get testing for several years for reactions to different forms of polyethylene since I need both knees replaced (that’s another reason why GinaD’s post was of particular interest). So far no success on the testing front and I do not dare have joints put into my body to which I might react badly since there would then be no alternatives available if they had to be removed. I have a similar problem with the polypropylene/prolene mesh which surgeons want to use for multiple hernia repairs and have not, so far, managed to get testing.

GinaD profile image
GinaD in reply to B-A-Dreamer

SomI sm mot alone! ( Thats one of the benefits of this site!) too am allergic to PEGs. I had gone into anaphylaxis several times and many doctors thought I must be allergic to " some common stabilizer or oreservative." But I had no idea how I was going to react to any intervention. One orthopedist accused me of " making it up " when I went into anaphylaxis after getting a cortisone shot. My knee is slowly getting better, but I wish I had a diagnosis! I probably should turn from orthopedic docs to my wonderful internist for more info. I will also ask him if there is a PEG booster I can access.

MaryF profile image
MaryFAdministrator

Hiya, I hope that settles down, I can't have any more jabs as the effect on me last time was awful. Perhaps your consultant can shed some light on it? Other than the Orthopedic one. Have you seen this one? cureus.com/articles/95397-c... MaryF

GinaD profile image
GinaD

Useful info. Of course, my knee swelling occured after a strenuous afternoon of reading a book! ( LOL) I had 2J &J shots last year, but none since then. Of course,does getting a mild case of covid duplicate the possible side effects of a vaccine? I do intend to speak with my internist this week. My knee is better, but my greatest concern is unrepairable damage to my knee prosthetic! Should I be on antibiodics? Should I be taking a steroid? Neither option was mentioned by the walk in ortho. I suspect that walk in ortho was not entirely suited to treat a complicated case such as an APS patient with a prosthetic knee.

Raw57 profile image
Raw57

I’m allergic to expedients in several medications and vaccines- flu and pneumonia. I was not allergic to Covid or shingles vaccines I have had serious allergic reactions to injectable cortisone and in tablet form

I have not identified the expedient I’m allergic to but I assume it’s commonly used in delivery of these medications and vaccines I did get a hypoallergenic flu vaccine one year and had no reaction

I injured my left knee in October. I had a complete rupture of the ACL and ripped the horn of my meniscus This lead to a full blown APS storm Both legs developed heavy petechiae and purpura rashes, excruciating nerve pain and muscle cramps It’s better but it was a mess. I did not consider receiving my vaccine the same week as a possible cause for the storm. I only considered the injury as a possible culprit to this APS storm until reading your post. Now I’m wondering if it was the injury, vaccine or both?

I noticed if I sit more than 30 minutes my leg swells and the petechiae returns I wonder if sitting while reading a book put pressure on your veins and nerves to cause the knee to swell ? My Antiphospholipids levels increased considerably but not 100 - 300 % as yours did.

I do hope you continue to improve and your joint functions well. I think you can contact the makers of the prosthetic joint and ask questions. You may also call the vaccine maker and report the problem

Please let us know what you discover and your how you are doing ❤️

GinaD profile image
GinaD

I was told after I learned from this site that I was probably allergic to PEG, that a PEG allergy can not meet a universally accepted allergen test standard. There are many sub categories of PEG and it is possible to react to some, but not others. And allergists may not be able to access all these sub varieties as some are company "secrets."

KellyInTexas profile image
KellyInTexasAdministrator

awful….

I’m going to try and find the medication excipients list that MCAS sufferers tend to do poorly with.

I had a series of TIA’s at the end of Jan and one temporal arterial clot and list vision for a bit so I’ve not come on in a bit. I can read only in short stents.

My husband ( fully boosted , etc) just got Covid two weeks ago. We thought he might have to be hospitalized.

His other two rounds with it have been a breeze compared to this

GinaD profile image
GinaD

The ortho I saw and his PAboth said they had seen a number of patients who “ were just getting over Covid when their prosthetic limb became enflamed.Their condition improved and we hope your will as well. “

And it has improved! Almost normal now

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