[SalamanderSpirit]

Just registered for this forum. Am 60 years old (sounds old but still think I'm 30!). Have had mctd for nearly 6 years. Reasonably well controlled with methotrexate and plaquenil but had to cease plaquenil earlier this year due to effects on eyes.
Have recently cared for my 85 year old dad through ca prostate and bone metastes throughout all of body.
Nursed dad in his home for 3 months before he passed away. So glad I could do that for him. But!!!!!! the emotional stress has really affected me and a week after the funeral I became very unwell. Husband took me to hospital in middle of night and turned out I had septicaemia and pneumonia. Pneumonia not responding to antibiotics for a couple of days and doctors getting ready to send me to ICU but next AB helped.
Now home and 'hoping to recover', resting, resting and resting, but am concerned as last couple of days have not felt as though improving....a little step backwards. Have just made an appointment with GP to follow up tomorrow. But why I've registered and now talking, is that I am feeling a little scared. Articles highlight that lupus and MCTD have a high risk of infections, and these can be very serious. I feel that my lungs may now be the week part of my body. Has anyone suffered from pneumonias and do they re-present. I am also keen on looking at chinese medicine/herbs to see if it they would improve my immunity and overall wellness.
Any comments appreciated.

 

[x_claire_x]

Hi.. I too have been diagnosed with MCTD for past six years. Emotional stress is a huge trigger for Lupus/Autoimmune disease activity kicking up a gear, so not surprised about your illness and indeed the timing once your body was almost allowed to fall apart.

I have pulmonary fibrosis as part of my MCTD and have lost 50% of my transfer of oxygen rate, which is concerning but a very common feature of MCTD patients, so it may very well be part of your pattern...have you had a CT of Lungs since pneumonia? and is the Rheumy involved with your care? He really needs to know if not.

It is not a good idea to go via Chinese Medicine or herbs without the input of your Rheumy and to be honest anything that 'boosts' your immune system is boosting the attack on your body......which you really don't need !!

Welcome to site, glad you found us and hope you find as much warmth, wisdom, kindness and humour as I have over the past 6 years..............Claire

 

[SalamanderSpirit]

Oh, couldn't believe when I received reply. Excited!....Yes I have tried to investigate "boosting the immune system" when we are trying to reduce the immune process.....but I suppose I want a bit of a cross of 'boosters'to actually improve overall health. We certainly are caught in the middle with mctd aren't we.
Any way.....I'm sorry to hear you have pulmonary fibrosis, I'm worried about getting that, but do feel that my lungs are going to be my weak spot!

Can you tell me how this developed.....i.e. how far into your having mctd and what your initial symptoms /signs were.

Anyway so pleased to meet you Claire........I do have a very lovely Rheumatolist whom I'm due to see in a few weeks , so we'll have a bit to talk about regarding my recent serious infestion and where that is leading me....I have had a few CT 's of lungs but that is going to be a fairly regular thing of the future too I presume.

I'll keep you informed of what she says.

Best of luck and talk soon.

 

[dmarie]

Claire has given you great advice.

I have had pneumonia and pleuritis and was put on a very potent antibiotic because I do not have a spleen. I responded well and it did not recur.

Let us know how you are doing and continue to rest.

dmarie

 

[x_claire_x]

Hi again..... I had one particular Winter four years into my disease when I felt dreadful...my disease activity was busy and I just felt rough....at that point it was decided I would either go on Chemo or indeed try the trial treatment...opted for the trial and during that they ordered a CT scan as I was a bit more crackly on one lung than usual....have a few crackles usually....anyway they found fibrosis but couldn't match up with previous CT as used a different method ! I had another one a few months later and nothing worsening, but my lung function checks show a slow reduction in oxygen transfer rate over the last two years.

My Rheumy said I wouldn't notice it particularly unless I was a marathon runner....ummmm no...LOL....and it doesn't affect me day to day, I walk dogs twice a day, go horseriding etc. I do notice it if I try to take a very deep breathe...feels like it is restricted; It does bother me, but however much I worry will not improve or change the progression, or not... and the energy worrying takes up I can use more productively in enjoying the times I feel very well.

It is a pretty common side effect of having MCTD and not the same prognosis as for normal Pulmonary Fibrosis, which is important to remember.

I hope you feel better soon...don't worry too much, you will tackle anything you need to when you need to....glad you found us....Claire