A little confused and worried.... any advice appreciated

[Justmesarah-]

So last month I attended my rheumatology appointment for my fibromyalgia, at my appointment the dr suspected I might have Lupus and sent me off for lots of tests. Everything come back normal apart from Igm levels which were very low, so my immune system is not what it should be.

Now because I haven’t got the diagnosis, I don’t go back until the 26th.... all being well! Should I put myself under the high risk category for the covid 19 and start a 12 week isolation..... or carry on as normal??

What would you do?

Ive called my GP who advised to call 111

I’ve called 111 to no avail, they stated that because they don’t have a list as yet of who is classed as high risk they couldn’t give me more info on what to do next.

I’ve tried to call rheumatology and I’m hoping someone is going to call me back after leaving a message.

I just don’t know which way to go with this so any advice is greatly appreciated xx

[PMRpro]

You shouldn't be carrying on as normal anyway - you should be social distancing as much as is humanly possible. Keep at least 1m, preferably 2m, from anyone, apaprently ill or not. Don't go anywhere with crowds or, really, anywhere you don't really NEED to go and wash your hands, wash your hands, wash your hands ...

But if it were me - I'd be self-isolating if it is at all possible.

[Justmesarah- in reply to PMRpro]

Thank you, that I’m already doing but I do work full time and don’t have a the opportunity to work from home so I am still out and about ... work then the school run ... home.

I’m fully aware of what I need to be doing in general but if I do have Lupus obviously I need to protect myself further but without that diagnosis, I’m in limbo...

[PMRpro in reply to Justmesarah-]

Not sure you need a lupus diagnosis as such - you have the result with the very low IgM, you can have that even without lupus and it does put you at risk of any infection, especially respiratory tract ones:

"Immunoglobulin M

Immunoglobulin M is the first antibody isotype to be synthesized, and it is the first antibody produced in response to a foreign antigen. It is mostly found in the bloodstream, although mucosal IgM has been noted in physiologic amounts. It has been hypothesized that it provides a level of protection in those patients with selective IgA deficiency who are asymptomatic.

IgM gains access to the airway by exudation or by active secretion via the SC. IgM is capable of agglutinating bacteria and activating the complement cascade, with a greater efficiency compared to IgG due to an increased number of binding sites.

Both selective IgM deficiency and hyper-IgM have been highly associated with recurrent upper and lower respiratory infections. In selective IgM deficiency, the genetics is not well known, although it has been hypothesized that there is a functional defect in B cell differentiation prior to the secretion of IgM. Recurrent sino-pulmonary infection is the most common manifestation, up to 65% in one cohort."

which is from one of the articles here:

sciencedirect.com/topics/im...

which in general is a heavy read for non-scientists. There is another article there that lists the conditions where you may find low IgM - lupus isn't a given and it is likely to be a while before they identify what is underlying.

Keep well.

[MEGS53 in reply to PMRpro]

Interesting! I also have chronic very low IgM, with the sinus and lung problems described. Thank you for the info.