Sticky Blood and Covid

[RoseFlowerDew]

Hi

I had positive antibody tests for two out of the three causing APS and was told by a rheumatologist in Newcastle I had sticky blood. I was going to be given treatment but unfortunately I had to return to live here in South London and the rheumatologists wouldn’t support the diagnosis even though they said to come off oral hrt to avoid risks.

So I have a question on how to look after myself with Covid? My fiancé had a positive test yesterday and has been poorly but I suspect that it won’t be long before I come down with it. Is there a way to avoid clotting issues when not supported by blood thinners?

[KellyInTexas Administrator]

Sorry to hear this.

1. I support coming off HRT/ estrogen based. ( mirena coil recommended if your gynecologist says it’s ok for you.)

2. Contact your GP/ GP’s nurse practitioner and ask if the following is ok for you:

1. Anti histamine- dye free Benedryl at first signs of illness ( helps with calming the inflammation)

2. Jr aspirin. Enteric coated. Once daily- ask if twice daily might be ok with Covid. ( this is not for fever- it’s for anti platelet purposes)

3. Guaifenison -to help thin mucus secretions. 600 to 1200 mg - ask provider how often to dose. This is for any patient. We use it in states for any upper respiratory virus to avoid infections in sinuses or especially lungs-

Extra fluids. So important.

[RoseFlowerDew in reply to KellyInTexas]

Hi,

Thank you….very helpful! I’ve had a hysterectomy which is why I’m on HRT and no coil. But I was changed onto topical hrt which seems to have helped.

I’ve tested positive for Covid now so I will follow up on this…particularly fluids. Thank you again.

[user666]

Do you have a history of clotting? If not even with apl positivity it is customary to not be given anticoagulants so your new practice might be acting wisely. The best prevention for avoiding having a clot is to keep moving. Walk regularly and avoid sitting still for more than an hour at a time. Hope you stay well.

[RoseFlowerDew in reply to user666]

Hi, thank-you….just in the throws of covid now. I do try to move but it’s difficult with the fatigue. I have had a miscarriage and 4+ years of nearly constant chest pain (not lung embolism), memory issues and more recently fitting so I think I have minor clots regularly. I decided myself to take aspirin which helps with all the symptoms but I was informed that I have to wait for a major clotting event before I get APS confirmed even though I had two positive blood tests over 6 months. Can’t remember which two antibodies were positive though

[MaryF Administrator]

It sounds like you have not seen a very supportive rheumatologist, if you have already had positive test results. KellyInTexas has given you great advice here. It would help your GP if they referred you to a Rheumatologist with the correct knowledge as it would help them also: ghicworld.org/ghic-consulta... MaryF

[RoseFlowerDew in reply to MaryF]

Sadly I haven’t. I seem to not be able to access the correct treatment for any of my conditions. Since I have seen two rheumatologists in the south who both said without major event I can’t be treated I was told that my GP would be unlikely to refer me for a third time. Thank-you for the link which is very helpful.

[MaryF Administrator in reply to RoseFlowerDew]

I had bad care for years, so I paid (after saving for quite a while), to go to London Bridge and see consultants there, money I did not have, as I have so many conditions plus dire allergies to medication, it helped to get my care back on track in the NHS, as it was thorough and everything was looked at. Some have private medical plans which of course makes that easier. MaryF

[RoseFlowerDew in reply to MaryF]

Hi MaryF

Thank you for your reply. I do occasionally think to go private but I had a bad experience with an expensive private neurologist I saw last year about developing fitting in addition to my pernicious anaemia (PA) neurological symptoms.

I worry about getting the right doctor at London Bridge knowing that some consultants work in Guys-St Thomas’s which is the main reason for my lack of care. Chest, lung, cardiac consultations frequently state my issues are rheumatological but the rheumatologists constantly refuse to help so I am passed back and forth for years now. Still in pain….still problems and a lost career now.

Additionally frightened because Guys had too many medical staff with no understanding of PA’s neurological issues which had it continued would have caused worse damage for me than it has already. I’m particularly concerned their cardiologists ruled out PA as it turned out that it was in fact poor PA management causing central chest pain and breathlessness. My confidence has evaporated and I don’t know how to pick myself up enough to arrange something at London Bridge.

[MaryF Administrator in reply to RoseFlowerDew]

Sit on it for a while, and think about it, sorry you are having such a grim time. MaryF

[RoseFlowerDew in reply to MaryF]

Hi….I’ve seen a neurologist who refuses to consider APS as a cause because of poor advise from a previous rheumatologist I saw at ESH so I’m ready now to see Prof Hunt because my problem is getting more serious and I don’t want to be disabled by a preventable stroke. Only issue Prof Hunt is no longer listed for London Bridge. Do you or anyone here have clinic details for her?

[HollyHeski Administrator in reply to RoseFlowerDew]

Hi,Prof Hunt has never had a private clinic and as far as I'm aware she is no longer taking on new NHS patients.

I can recomend Prof D'Cruz at London Brdge although I was under him at St Thomas's.

[MaryF Administrator in reply to RoseFlowerDew]

She is based at St Thomas' hospital, there are other private doctors at London Bridge and they also work on the NHS. MaryF

[RoseFlowerDew in reply to MaryF]

Unfortunately it was thomas’s refused to help last time (they didn’t realise blood test interferences with Hydroxycobalamin) so GP won’t refer again. Anyone know a good private doctor at London Bridge who speciality also includes neurological complications?

[MaryF Administrator in reply to RoseFlowerDew]

Ring them up and have a chat, the PA's there will know who is available and who works with Hughes Syndrome/APS patients. MaryF

[Bella_Bee]

I know we are not supposed to recommend private clinics but I doubt the same goes for NHS. Get a referral from your GP to see a hematologist and choose Prof Hunt at St Thomas's. Few people understand APS better and she's incredibly helpful. Don't worry, you'll be in safe hands.

[Lure2]

Hi,

I live in Sweden but I have heard that Prof Hunt has a thorough knowledge of our illness APS many many times. It is enormous important for us with a Specialist of autoimmun illnesses.

I wonder if you took two bloodtests with 12 weeks between the tests and also which 2 bloodtests were positive? We must take the bloodtests twice but only need one of 3 antibodies positive to get a diagnose as to the bloods. We also need some symptom typical for APS. Microembolies are very often difficult to see on a Scan but today most Specialists know that they exist.