A little update on my previous post and many thanks to those who responded.

[Boudica1]

Slightly more awake/ able today so phoned GP surgery after a very long wait finally got through to a very tired and stressed receptionist. In between saying what my problems where we interacted and talked about this and that, I could tell by her voice alone and the stiffled heavy sigh she was struggling herself she let slip she was having problems sleeping but I didn't think it was right to push for more information. She sounded genuinely appreciative that I had picked up on something. After hearing what I was trying to explain she put me down for either a doctor or respiratory nurse who is very good in her field, whoever was available first. Less than a hour later I got the respiratory nurse and spoke with her, I've had consulted with her on a number of times over the years she knows her stuff and knows me and that I come from a family of lung and heart problems and will always try and deal with things myself because I know how to adjust the meds when needed.

I explained the best I could what is going on with the chest and what has been happening this past year and what happened when I finally for the first time ever realised that I was out of my depth and sort help at the hospital.

Silence on the phone, hmmmm, I have problems with the ears so wasn't sure if I couldn't hear or if the phone died 😂.

She was online reading the hospital notes of my visit in June, mentioned something about a x-ray and or scan and follow up? Told her that I the last scan I had was 3 years ago and x-ray 5 years back and nothing since and not when I was struggling in June and at the hospital.

She has now left a message with my usual GP who will be getting in touch with me.

In the meantime I'm back on Prednisolone and as I told her that would be great because the previous 2 times this year that the GPs put me on a short course of Prednisolone not only did it do the trick with what it was meant for but almost everything including the rashes cleared up for a few weeks which was more than dermatology clinic have managed.

So picking up the prescription tomorrow and waiting for my usual GP to be back on duty 😊.

It's actually amazing how such a simple phone call can at least lift the spirits so wondering now what will happen as usual GP will push and does push hard.

Keeping fingers and toes crossed and waiting to see how the hospital react to a pushy GP .

♥️💞♥️

[eekt]

😊👍💪...once more into the breach! xxx

[stiff19]

Glad you got some help and feeling not so down. It’s good to have you back 😀🤗

[Foggyme]

Great news Boudica1. Really pleased for you 🙂xx

[Wendy39]

Good to read that you are getting help with this. Sounds like you need some updated tests and scans to compare with. It’s a nightmare the way we have to carefully negotiate the system to get what we need. I’ve had a few courses of steroids over the years and there do help all lupus symptoms and much quicker than any other lupus medication, for me anyway. I just wish they didn’t carry the awful long term side effects. I love that I have energy too with them. Good luck and keep us posted. x

[Boudica1 in reply to Wendy39]

I spoke with my usual GP yesterday and she read through the hospital notes of my visit to A& E in June. GPs hadn't been notified or more importantly told that I have to be back on the Calcium Channel Blocker. GP not a happy bunny 🐰 with them.

Had a great chat with her and it seems that it's not the lung problems that are aggravating the Arrythmias as I thought but the heart causing the exhaustion and breathing problems. She's phoning back next week and just in case has also penciled in a face to face appointment as well as the last time I was on the med I was having some horrendous side effects as the doctor at the hospital had put me straight on a high dose. GP has put me on the lowest dose and monitoring the situation.

Oh so far the Prednisone doesn't seem to be working at the moment not even with the rash which it did the other times earlier this year. Oh well sods law can't have a win win every time 😂😂😂.

♥️