I've just been diagnosed with a lupus-like disorder (Rheumatologist said "it is lupus, but atm I'm going to call it a connective tissue auto-immune disorder").
The most disabling symptoms are breathing problems ("interstitial lung disease") and OMG THE EXHAUSTION!!!!! I have gone from being a fit, mountain-walking, 56 year old man to being effectively housebound within a matter of months. Even typing this, I am shaking with fatigue.
I am on 20mg prednisilone and 400 hydroxychloroquine daily, but with zero impact so far.
I'm becoming very alarmed at the rapid progress of the disease and wondered:
- anyone have any other brilliant ideas about coping with fatigue (I have seen the Lupus UK guide)
- any encouraging words?
Thanks
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whisperit
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This is bound to be a big jolt...hang on in there though: there is every chance you can be back in the mountains before too long. I too loved mountain walking...and had to give it up due to the cumulative multisystem effects of a lost infant onset lupus diagnosis...but 3 years on from rediagnosis am walking up there again! So, it's really good that you're now on the way with trials of your first connective tissue disorder/lupus meds....how long have you been on pred + hydroxy? when will you next be reviewed in clinic?
I hope your consultant is proactive. The diagnostic & treatment process can take a bit of time to evolve the right cocktail 🙄 of systemic meds for you...but that's mainly the way this goes. eg, my infant onset lupus is mostly relatively mild but v debilitating & complicated by a primary immunodeficiency making me prone to respiratory infection....systemic treatment began 5 years ago: I was started on daily hydroxy. After 2 years we realised hydroxy helped a lot but didn't damp my fatigue down enough, so we tried adding low dose 4 week prednisolone tapers, which really improved my stamina & resilience. Now I wish I'd been quicker to appeal to my consultant sooner for more help with my fatigue, but I was reluctant to add on more pills 😉. These days, consultants avoid resorting to daily pred (except in cases like yours where inflammatory process is significantly flaring) so we trialled adding daily mycophenolate alongside hydroxy which continues to greatly reduce my fatigue with no apparent side effects. Recently we also added in daily low dose pred. This cocktail is working v well for me... I'm 62 & feeling more stamina & resilience + less fatigue then I have since my early 20s
On the other hand, lifestyle management continues to be key to minimising my fatigue & shakes etc...I am constantly pacing myself, rationing activity, sidestepping stressful situations etc. This is second nature to me now & makes all the diff...afternoon siestas especially 😉
Am sure you'll get some great replies
Wishing you all the very best....and hoping you'll keep us posted
Thanks, Barnclown. I really appreciate your kind and helpful comments. Frankly, the whole process has been/is pretty scary.
To answer your question, I've been on the hydroxy for nearly 5 months now, and the pred for about 4 weeks. I was reviewed last week and the consultant stopped the intended steroid tapering as I have continued to deteriorate. He is planning to review in another 4 weeks.
I guess it will be a long term process of trial and error and adjustment.
You're vvv welcome. And thanks for answering my ?s...am glad your consultant is keeping nice & close to you while this flare is in action. And I like your attitude: you & your consultant are getting to know your version of immune dysfunction/connective tissue disorder
Yes, ths is truly tough...and yes this is a long term process of trial & error, so do give yourself a chance to celebrate each success along the way: first you'll stop this flare ...then you'll evolve an effective treatment plan....so when you get through this flare give yourself a BIG pat on the back...then get on with figuring out the right daily therapeutic meds for you...and please keep us posted
🍀🍀🍀🍀
Hi, I have also been diagnosed with this proberly about 6 weeks ago now from being very ill for a whole year... I also have mixed connective tissue disease and the start of lupus which will turn into the full lupus...
I was also on hydroxychloroquine but after 3 weeks of taking that I developed a huge allergic reaction so currently on no meds... It is all hard to take it to know you have a tissue disease from being completely healthy but this site does help, you do need as much support as you can from family members, but I have been taking it quite bad as I'm only 21 and have the whole of my life in front of me just being ill...
Hi Whisperit. As I have just said to another new guy, welcome to the best resource you could ever find.
We understand. Have felt it, been frustrated by it, cursed it, despaired by it. But here, wonderful help and support 24/7 365.
As evidenced by one of, as I call them, our gurus, Barnclown. She exemplifies everything great about this site. I promise that you will always be treated really well. That our knowledgeable guys here will give advice and info at will with glad hearts and that the Charity itself is second to none in helpful resources too.
Its a tough road. No disguising that. It takes time. Processing. Patience and kindness for ones self to go from 60 -0 in zero seconds at first. Life changing. But as Bc says, answers will come for your personal journey and all the resources and people here will help toward that.
Just come to read sometimes. You will find answers, tips and many many friends.
Three years ago, I had a serious accident. It took about 18 tough months to recuperate, but at least the steps to recovery were clear and I could set goals and targets for physio etc.
With this thing, it feels like anything could happen, anytime.
I am not liking it ONE BIT!
But as you suggest, I'll be hanging around here from now on!
Yep understand completely. The bu.... Of this is the feeling of lack of control I think, amongst the rest. As you say, give us a goal, a plan, get your head around it, deep breath, get on with it but this!!!!
Its like - have an accident. Ok
Right lets do this... or no, lets change the accident a bit, different part of body? Er ok
Right. Plan lets do this, no, that, oh hang on change the accident and add to it. WHAT?
Completely bonkers.
Roller coaster ride is just one whimsical often made comparison. Ha! No where close. Yeah?
So yeah, hate it, resent it, curse it but you are stuck with it, for now in this shocking form and just try to be gentle with yourself, listen to your body cos pushing it and stress are one way tickets to a downward spiral. So, good luck. Vent, scream, celebrate with us, anytime.
Give yourself time to process everything and remember, you are not alone. We know, we know.
There are young people on here who will empathise closely with you.
Take heart in guru Barnclowns words and, realise that the trials that a lot of us long time sufferers have, have edged knowledge forward, a bit, given rise to research, a bit. Research is ongoing and broadening all the time. Drug options are being developed - so that long long road may be some miles shorter for you soon!
Please take a little heart from that and do come here for inspiration and ideas. Anytime. You can learn so much here.
Bless you lovely
Keep your chin up. It takes time, but you will feel a bit better in the future.
If you have "interstitial lung disease" aka pulmonary fibrosis, and u are not on oxygen, you need to find a good pulmonologist. I have had inconclusive mixed connective tissue disease diagnosed in 2001, 2008 was told I have ILD (IPF). On oxygen and just started Med called CellCept to slow it down. My brother died with it in 11 months after being diagnosed. GET SOME REAL HELP!!!
And thanks for the heads-up. Luckily, I have a review appointment with my resp. consultant soon. I will make sure he satisfies me about how he is seeing the problem - and treatment.
EDIT - I just looked up CellCept - that's mycophenolate, right? - he said he will start me on that soon
Yes, I've tried it in the past at 500mg AM-PM. Stomach issues made it intolerable for me. I talked Dr into starting me on 250mg morn n evening...alls well for past 2 was, now I start 500mg morn n 250 eve, in 2 weeks I'll be on 500 morn n eve. I'm praying, eating foods w probiotics and taking DoTerra probiotic, and Digestzen every day! So far, so good. 😜
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