Diagnosis of lupus COVID-19

[ibrar132]

Good morning everyone I was wondering if somebody could help me. I was in the process of being diagnosed before COVID-19 and since then everything has come to a standstill my symptoms are getting worse and I’ve got a new symptoms coming on all the time also what bothers me is I get short of breath but my saturation is hundred percent so when I go to A&E they think that my saturation is fine so I can go home again I have a disabled child so I am worried about me I’m afraid of being slipped through the net

I gonna be able to get somebody to take responsibility for my care

Symptoms so far short of breath at rest low blood pressure increased pulse rate fainting pain in joints chest pain my lungs feel tired I have pain in the middle of my back with my kidneys are I struggled to urinate continuous nausea loss of appetite lost huge amount of weight night sweats cough temperature cognitive problems

That’s some of my symptoms

Any help or information would be appreciated

Kindest regards

Bobby

[Treetop33]

I imagine you must be feeling very scared right now. One thing you need is for your docs to take the condition seriously. If you can, get in touch with your rheumatologist and/or GP. And draw in support from social services/local authority covid help (call the council) regarding other support.

I have lupus and may have had covid too - still unclear as never got tested. Getting worse is not inevitable even for those with lupus. But I remember having to work very hard at keeping it at bay as you feel like it is going everywhere - rest, hot baths, relaxation exercises, breathing exercises, vitamin c in high doses, vics for breathing. Probably all those things did nothing but gave the illusion of control (which was good). The hospital should know that breathing problems may be caused by blood clotting...something to ask them about.

Sometimes when I get a bad UTI I also get some of those symptoms you have too.

A few things to check out. Main issue is you need a health advocate so you can be tested for various things. Take care and we are all thinking about you, even if it is early in the morning or in the middle of the night (scariest times, I found). xxx

[LalSD]

Hello Bobby, Not sure if you are in the UK but i think you need a specialist as soon as possible and dont hesitate to call hospital emergency line again. You mentioned possible early diagnosis. Try contacting your GP and state your emergency and ask their help for an emergency appointment and see if they can contact the consultant on your behalf. Lupus UK have a help line and was going to be back in action if you need to talk to someone. (You need to double check this).

I am not sure if you can also be checked for covid19, do you think it is possible? But beside this, see if your GP can consider giving you a recommended medicine on behalf of your doctor. I had to resort to private doctor eventually. Very costly and I would not recommend it, please forgive me for mentioning but only if you have finances I would try London based Lupus doctor with the copy of your blood test results for a second opinion and if they can help you get diagnosis.

My experience: I had a case like this back in 2012 for a brain tumour. My consultant diagnosed me, gave me the name of a pill to take if my results were confirmed tumour and joined a private hospital the next day. This left me struggling. I eventually had to prove that I had a brain tumour and needed that medication asked my GP to provide it who was intelligent enough to see where the shortfall was (took me 3 months). The only downside was that the medicine 'cabergoline' had a side effect which was depression and i went as far as being severely depressed and had suicidal thoughts(not like me at all, even with lupus). Because this med was given to me based on the tumour, my GP did not think to give me antidepressants as part of the treatment (not knowing that depression was a strong side effect of the medication). Then of course I got labelled as a patient 'who suffers from depression'. :).

So if you do get your medication which you have not used before, make sure you ask the right questions for the side effects and ask the doctor what to expect.

I was so desperate to reduce my headaches that I was happy not knowing what was to come my way whilst being on this med.

Hope this helps,

Lx