New diagnosis..... any advice?

[Susieliz39]

Well, I went for my appointment with the respiratory Consultant On Monday and I’m gobsmacked, upset, worried, anxious and many other things that I know many of you will be all too familiar with.

I’ve bobbed along with Lupus for 10 years but it now appears Lucy Lupus has upped the ante.

In a nutshell, my lung function is currently at 37%, and inflammation is in both lungs with some fibrosis. It has to be approved by rheumy consultant but resp consultant wants to begin microphenalate infusions asap.

I remember reading a post from Meg earlier in the week, about intestitial lung disease but can’t find it now!

I wonder if anyone is able to enlighten me any more, reassure, share your experiences?

Seems like the gastric reflux has turned out to be something more serious 🙄☹️

Best wishes

Sue x

[Spanielmadlady]

Sorry to hear the news was worse then expected.if you click on members then put megs53 in the search bar you will find who I think you are looking for.

I have lung problems. I have bronchiectasis and take mycophenolate tablets, carbocisteine tablets ,inhalers and nebulizers .I'm sure others will be able to give you some more advice xx

[Susieliz39 in reply to Spanielmadlady]

Thank you for your reply Spanielmadlady. Have you had any side effects with mycophenelate? Did you improve? From your posts, I know you walk your dogs every day, think that’s probably what I need to start doing too. Not sure hubby will stretch to a dog just yet though. 🥴

[Spanielmadlady in reply to Susieliz39]

I've been taking it for 13 months now.i had the usual nausea but I had violent headaches.i used to run around and do what had to be done before i took the tablets coz i knew i couldn't lift my head off the sofa.i asked to delay increase as my grandson was due and I couldnt drive with such bad headaches.when I did increase I got them back again for a few days.the only other side effect is my hair.....its gone curly .I've got chemo curls in my poker straight fly away hair 🤭

I cant say how much of an improvement I've had except I've had no poor breathing episodes and appear stable.ive got my steroids down to 7mgs 👍

Yes we are out every day ( when I can stand upright....2 falls this week🙄 ..everything waterlogged and very slippery) .....oh some gentle persuasion needed there lol.....they are some of the best medicine going ...they keep me moving xx

[Susieliz39 in reply to Spanielmadlady]

That’s good to hear that they have been of benefit for you, although the bad headaches are not great. I can cope with curly hair, mine is fine and straight too, expect it’ll take be back to my ‘80’s perm!

Thank you for replying Spanielmadlady, I read the posts everyday but don’t have much advice to give really as up til now have only taken hydroxy.

Expect you may all get fed up with my questions questions over the next few weeks! Think I’ll have to take up knitting too, as I’ll not be going anywhere anytime soon either .

Look after yourself, stay safe x

[stiff19 in reply to Susieliz39]

Hope you get the help now 🙏 best wishes 🤗

[Susieliz39 in reply to stiff19]

Thank you Stiff 19, your support is appreciated. X

[stiff19 in reply to Susieliz39]

You are more than welcome 🙏 stay safe 🤗

[Oshgosh]

I have interstitial lung disease along wi lupus and rheumatoid athritis.my lung disease presented first,

PM. Me if you want to.

I’m not too good at the moment,so may not get back to you immediately.

[Susieliz39 in reply to Oshgosh]

That’s good of you OshGosh, it’s much appreciated. Take care of yourself and hope you are on the better side soon x

[Spanielmadlady in reply to Oshgosh]

Feel better soon oshgosh 🍇💐

[stiff19 in reply to Oshgosh]

Hope you’re feeling better soon 🤗

[Susieliz39]

I know, these are the questions I’ve started to ask myself too. I’ve never had routine Lupus tests at my yearly consultations, only update on how I’m feeling etc. I only said to hubby today that it would make sense if that was what’s offered. Is that routine procedure in some areas?

I am wondering if the gastric reflux I’ve had for years is linked but the jury is still out in that one.

The virus that I had last Christmas, possibly Covid floored me too and think hasn’t helped at all. Linked with appointment in March put on hold for obvious reasons has all delayed a diagnosis 😳🤦‍♀️

[Meg52]

Hi Sue

It's not surprising you are feeling anxious and upset. I'm sorry to hear your diagnosis. Have you had any other checks on your lungs in the past 10 years?

I take mycophenolate, carbosisteine, Fostair and Ventolin inhalers for Lupus, CTD ILD, Fibrosis and bronchectasis. I started mycophenolate 20 months ago and take 1 gm twice a day. I was worried about taking it as I have GERD and take omeprazole twice a day and they have increased my gaviscon advance to four times a day because of acid, but other than that I haven't had too many side effects from it. Unfortunately, it hasn't been quite enough for my ILD and they are putting me the next level of treatment. They can't increase my mycophenolate because my weight is too low.

They wouldn't put you on the mycophenolate if they didn't think you needed it and will benefit from it. You should be monitered regularly to check your blood and how you are when taking it. I've also had regular scans and lung function tests and was given a direct helpline number for the lupus clinic. This is only my experience of taking it and probably others will be able to help you further.

Good luck whatever you decide, let us know how you go on.

Meg 😊

[stiff19]

Well said 👍 I have to sadly agee

[Susieliz39]

Many thanks for your reply Meg. It seems I have a very Similar diagnosis to you. CTD, Gerd, some fibrosis and ILD.

I’ve just spoken to the nurse, which has been reassuring. Hoping to begin infusions of Mycophenolate over the next few weeks, so fingers crossed.

I’ll let you know how I go on.

Sue x