Very confused🤔

[Mayacat2]

Confused......... I have CLE /DLE and phoned the dermatology department today to ask if I should self isolate for 3 months as I hadnt received a letter but was told that due to my meds I wasn't high risk. I take 200mg hydroxychloriquine daily and assumed this weakened my immune system as an immunosurpressant, I was told that they are using hydroxy in some cases of covid 19. I assumed that since my diagnosis 3 years ago being told I have an autoimmune condition and reading up on lupus that I am prone to infection, is this not the case then, Im really confused right now😔😔

[welshexile100]

Hi there, fortunately hydroxychloroquine is not an immunosuppressant it is an immune system regulator. However it seems entirely reasonable for you to self isolate if it makes YOU feel safer!

Take care, stay safe, stay strong 💪🏽🙏😁

[Pickzie]

Hydroxycloroquinte isn’t an immunosuppressant and is in fact being investigated as a possible treatment for Covid. Hopefully that allays some of concerns. Immunosuppressant drugs include things like methotrexate and infusions such as rituximab. The British Society of Rheumatologists have published a good summary. But auto immune conditions can make you more susceptible to infections so wise to take stringent social distancing and hand washing measures. Best wishes XX

[milkwoman]

It’s is all confusing as there seems to be conflicting opinions.

Our immune systems are actually HYPER active and while there are lupus meds than suppress the immune system hydroxychloroquine isn’t one of them. It regulates it.

BUT as most would attest: us with lupus seem to get sicker when we contract viruses. My husband can get a bad cold and he’s over it in a few days perhaps a week. I get a bad cold and I’m down for , at times, 2 months. I can only imagine what my immune response would be to Covid-19!

The fastest way to treat this pandemic is to try existing approved meds. There a whole list that is being tried and there seems to be success with hydroxychloroquine. But it’s too soon to tell and there are risks.

From the cdc:

“Hydroxychloroquine and chloroquine are oral prescription drugs that have been used for treatment of malaria and certain inflammatory conditions. Chloroquine has been used for malaria treatment and chemoprophylaxis, and hydroxychloroquine is used for treatment of rheumatoid arthritis, systemic lupus erythematosus and porphyria cutanea tarda. Both drugs have in-vitro activity against SARS-CoV, SARS-CoV-2, and other coronaviruses, with hydroxychloroquine having relatively higher potency against SARS-CoV-2 [1,4,5]. A study in China reported that chloroquine treatment of COVID-19 patients had clinical and virologic benefit versus a comparison group, and chloroquine was added as a recommended antiviral for treatment of COVID-19 in China [6]. Based upon limited in-vitro and anecdotal data, chloroquine or hydroxychloroquine are currently recommended for treatment of hospitalized COVID-19 patients in several countries. Both chloroquine and hydroxychloroquine have known safety profiles with the main concerns being cardiotoxicity (prolonged QT syndrome) with prolonged use in patients with hepatic or renal dysfunction and immunosuppression but have been reportedly well-tolerated in COVID-19 patients.

Due to higher in-vitro activity against SARS-CoV-2 and its wider availability in the United States compared with chloroquine, hydroxychloroquine has been administered to hospitalized COVID-19 patients on an uncontrolled basis in multiple countries, including in the United States. One small study reported that hydroxychloroquine alone or in combination with azithromycin reduced detection of SARS-CoV-2 RNA in upper respiratory tract specimens compared with a non-randomized control group but did not assess clinical benefit [7]. Hydroxychloroquine and azithromycin are associated with QT prolongation and caution is advised when considering these drugs in patients with chronic medical conditions (e.g. renal failure, hepatic disease) or who are receiving medications that might interact to cause arrythmias.

Hydroxychloroquine is currently under investigation in clinical trials for pre-exposure or post-exposure prophylaxis of SARS-CoV-2 infection, and treatment of patients with mild, moderate, and severe COVID-19. In the United States, several clinical trials of hydroxychloroquine for prophylaxis or treatment of SARS-CoV-2 infection are planned or will be enrolling soon. More information on trials can be found at: clinicaltrials.gov/external icon.

There are no currently available data from Randomized Clinical Trials (RCTs) to inform clinical guidance on the use, dosing, or duration of hydroxychloroquine for prophylaxis or treatment of SARS-CoV-2 infection.”

Source: cdc.gov/coronavirus/2019-nc...

What I’m unclear on is if patients with SLE are at a higher risk than those with SLE. The answer may be yes, I don’t know.

The safest thing for us is to limit our contact with anyone who has Covid-19 and the only way to truly do that is isolation. It’s up to you to decide if you can actually do that or not.

[Shann07]

Hi, I take hydroxy as well as I recently came off Azathioprine. There seems to be no consistency to the advice of whether we need to isolate for the 12 weeks. I have read many posts here that some of us have received letters or texts from their GP to isolate for 12 weeks. I seen a few posts for a link to NHS covid virus guidelines for Rheumatology patients which clearly states SLE is graded as high/very high risk just based on the condition itself and not the meds we take. Im expecting a letter from my GP next week, and Im hoping its a ‘shielding’ letter for the 12 weeks as my employer is requesting this. I totally understand your frustration as why are some of us given this letter and others not? Xx