I'm ill and I'm not getting better. Do I hold on or go back to my dr?

[Cocolepew]

I am newly (December) diagnosed with Lupus.
In February I had a flare and double pleurisy for 8 weeks . Then for three weeks I felt amazing , much improved. I went on meds in january.

I now have pleurisy and crackles on my lung. My dr sent me up to hospital on friday (ambulance) because he was worried aboutmy breathing I was let go with codine and an extra course of steroids , which Im coming off now .

I feel so awful, I can barely move around. I just feel ill

I have some more symptoms which are Lupus linked.

I wil be seeing my consultant in the summer.

Do I suck it up as a flare or should I go back to the gp?

There is no shared care in place yet, it's, too soon after my diagnosis and the last two times I went to the gp they phoned an ambulance.

My bloods were normal last week.

Bit whingey that

Pathetic bump.

You need to see your lupus consultant - I'd start by phoning their secretary. Or going back to GP and getting them to contact your consultant.

No-one else but your specialist can really advise you and he is probably blissfully unaware your lupus is out of control.

I have a number for a rheumatology nurse but they only check the machine once a week.
One of the gps phoned my consultant on friday but I never heard anything.
DD is doing her gcses and Im trying to soldier on I was scared I'd end up in hospital and stress her out.
I can now feel my ribs grinding together.
DH is off tomorrow I'll try for an emergency gp appointment.
Thanks

I would agree about seeing the consultants. GP's can help you with pain relief but your consultant knows your condition better and will know what to do - try and rest if you can and keep on top of the pain relief you have already been prescribed.

Oh bugger, you've had enough to deal with (saw you on another long-standing thread when I was Fen).
Yes, do call the hospital and ask to speak to X consultant's secretary - get their name. Explain the situation. Usually they're very helpful and will sort it for you. If they're not, keep calling! If all else fails, write a letter to the consultant.

Thanks
I'm phoning my dr for advice this morning, maybe she could speak to the consultant.
I took terible cramps last night and have a butterfly rash now.

I have been on prednisone (for pleurisy) for 9 days and Im tapering it off now, I wasn't sure if it was side effects of that.

Now I smell like pear drops
I don't have diabetes

Now I smell like pear drops
I don't have diabetes

Have you managed to speak to anyone/be seen?

Steroids can cause diabetes and smelling of pear drops can be a sign of serious illness in a diabetic.

None of what you describe sounds like side effects of steroids (except the possibility of diabetes) but it sounds like a serious and uncontrolled flare of lupus.

You need to be seen today, if necessary at A+E.

Yes thanks I did, kundry
My gp is emailing the consultant team, he said it will be looked at in a day and has asked them to see me ASAP.
I don't smell pear droppy anymore

Feel a bit better than last night but it definitely seems to be a flare, I have a butterfly rash. It's the worse I've ever been .

Sorry I keep repeated stuff in my posts

Pleased you saw your GP today and he is on the case. Hope you get well soon, lupus is a horrible condition.

Thank you