New to this part of Health Unlocked, general advice please?

[Ceri-NorthWales]

Hi all, I'm new to this part of the site, I usually post on the Lupus UK side - whi have been so helpful. I owe them all so, so much!

Was diagnosed SLE Oct 2019, Raynaud's phenomena confirmed, migraines, PPPD, chronic/permanent leukopenia and neutropenia. Had both flu and pneumovax jabs last Nov.

Have no access to rheumatology (mainly political reasons due to devolved NHS). SLE is active and completely untreated. Did have an IPFR form going through with GP so I could access rheumatology justover the border at a closer hospital in at Countess of Chester. However, I know have no GP as GP practice manager removed me from the list whilst going through a mental breakdown and in crisis and just a few hours after I had the police at my door at 1.30am in concern for my welfare. GP was brilliant and she didn't want it to happen. Police said I should go to GP and ask for help (was there anyway for B12 injection which I had to fight for nearly a year to get!). And instead of help, I was handed a letter from the practice manager removing me from the patient list. What else would you do when someone is still in shock and injured after a serious car crash in the overtaking lane of a busy dual carriageway toward the end of rush hour, minor surgery on injured should (pre-booked), scary neurology appt with scary diagnosis, dealing with the incompetent insurance company ESure, traying to find transport to these appts at short notice and denied PIP, awareded 0 points. All that was in 5 days and was the week of March 16th, the lead up to lockdown when there was mass hysteria and panic, when things were changing by the hour.

I have had no letter in regrads to shielding and apparently am of no 'additonal risk of COVID-19 to an otherwisehealthy person'. I have zero access to healthcare. SLE is completely untreated, I seem intolerant to the first line of treatment, hydroxychloroquine.

Should I be shielding? I know Wales are adding more people to the shielding list.

I am also wondering what immunosupressant means? With having leukopenia (white cell count is between .1.9 and 2.5) and neutropenia (neutrophil count hovers around 0.5 and 0.6, 0.9 is a 'high' result for me), does that make me immunosupressant?

And generally, if anyone could give me any advice, it would be so very gratefully received. Thank you for reading

[JFlay]

Hi,

Gosh you have a lot going on! sorry to hear that 😟 not sure where you should start. NRAS (national rheumatoid arthritis society) have a helpline number you could try 0800 298 7650 they may be able to give you some advice?

Here's a link to Citizens Advice about registering with a GP or having problems with a GP

citizensadvice.org.uk/wales...

I'm on hydroxychloroquine and it doesn't suppress the immune system but with your white blood counts you really need advice from a doctor about shielding etc. Sorry that's not much help!

[helixhelix]

We’re not doctors, as you know from Lupus site, so can’t give you medical advice - especially as you sounds as if you have complex overlapping problems.

Anyway it is clear that the most serious comorbidities for this virus are heart and lung diseases. Obesity, diabetes and smoking also seem to increase your risks of getting a serious covid disease. However, the jury still seems to be out on how much of a risk just having an auto-immune disease is as there’ not enough analysis of data yet. As far as drugs go, things like steroids do increase risk apparently. It could be that doctors are just being cautious in assuming those on immune compromising drugs like MTX and suppressing drugs like biologics are more at risk. We really don’t know for sure - but best to be cautious!

So if you aren‘t on any drugs then it could well be that you are at no more risk than anyone else your age and sex (women seem to be less vulnerable). But, with the low white blood cells etc be very cautious just in case!

[Ceri-NorthWales in reply to helixhelix]

Thank you for your reply and sorry for replying late, the wonderful world of migraines and fatigue. Thing is, no I'm not on meds, not because I don't need them, but because I have no access to rheumatology and I seem intolerant to the first line of treatment, hydroxychloroquine. I've had cardiorespiratory issues since battline pnuemonia and pleurisy March and April 2019. Had a referral for respiratory medicine put through last November and with this pandemic assumed this was all on hold. However, I have received a letter inviting me for lung function tests 'in the coming weeks'. Not sure how I feel about this. Also, it makes no sense for GPs not to give B12 injections, but for lung function tests to still be going on?

I have contacted MPs, citizens advice and even the senoir manager of North Wales Mental Health Team out of shear desperation with everything going on. I have contacted have contacted the media, who are interested in giving my story, but I'm not sure.

The two most devastating things to in the last few weeks is the car crash and being removing from GP list as they have caused the most issues. I just don't understand why you would remove someone from the GP list when they are in crisis, going through a mental breakdown and with so many huge issues going on, why add another huge problem? I'm at a total loss. If I still had access to a GP, things would be a lot easier. As each week goes by, there are less and less buses through this village, there are now at 8.55, 10.55, 2.55 and 6.15 Mon-Fri only and that is only 3 miles down the road.

It's an impossible situation. If I had access to a GP (the decent one I liked at that GP practice, I could just ride this lockdown out. I am due the depo injection the latest of May 20th and atm, this is going to have to by self administered. Will be awkward, but I have no choice.