Bronchiectasis and Scleroderma.

[SandraMarie]

My respiratory consultant does not seem to connect one with the other and yet on google it says that the Scleroderma can cause Bronchiectasis. I've become far worse in the last year, and recent CT scan showed Bronchiectasis is worse, but I was told the Scleroderma is not in the lungs, can anyone explain this to me??? and is one as bad as the other, as my breathing has really deteriorated and there seems to be no treatment available.

[Carolanne]

I have Lung Fibrosis and Bronchiestasis. My CT scan showed scarring of the lower lungs, I have had 6 sessions of Cyclophosphomide which is a form of Chemotherapy. I am on Mycophenolate tablets twice daily and my breathing is much improved.

[SandraMarie]

Mine is in the lower areas too. My consultant is quite adamant that it has nothing to do with Scleroderma??? Thankyou for reply, I'm glad you're getting some relief from symptoms.x

[DebKate]

I am battling C.R.E.S.T form of scleroderma ...

I've been told I have fibrotic material in the lungs, and "mild" Bronchiectasis...whatever that means. I have chemical sensitivity... meaning ... fumes and scents of all types bother me a lot! So I certainly can relate to the confusion you experienced through the lung doc.

I was recently sent to a lung doc by my rheumatologist because my heart/lung blood pressure was reaching the high/normal reading done through an echo of the heart ... well, the last reading on that came back in the normal range, but while I was there seeing the lung doc he seemed to think I didn't have much of a lung problem...and was on too much meds (spiriva, albuterol, prednisone, etc.) I DO have a breathing problem ... pretty serious, I feel...can't walk a block without heart rate going up, and fatigue...and having asthma-like symptoms...especially if i walk fast.

I don't think docs totally understand how C.R.E.S.T or limited scleroderma affects the lungs ... but at any rate, I went back to my rheumatologist and she said, "Deb, you have multiple lung issues, and your lungs are affected ... don't worry about the lung doc not "agreeing" with how your lungs react to the dis-ease." (I was really upset that the lung doc seemed to think I didn't have a problem...i wish I didn't, but I KNOW i do!)

At any rate...i am continuing the lung meds, because they do help...especially the prednisone... and albuterol ... i can get into trouble really fast without them...although i don't like the side affects and the potential of not ever getting off of prednisone.

Even with all that I am fighting... and limited activity outside of my home ... i manage the illness well, and watch my fatigue level, and how I "exercise" ... I am able to keep house, cook, and enjoy my family ... but I hardly go anywhere outside the home ... except to shop for groceries, and a few other things.

Nutrition helps me a lot, and rest ... I crash sometimes for 3 or 4 days at a time, but I get back up and go again. It's a strange dis-ease...but with management life can still be enjoyable ... even if semi-home bound.

I have an understanding rheumatologist who also has some form of auto-immune disease, herself...so she has a lot of compassion and personal knowledge of these mis-understood, invisible dis-eases and that helps as much as any med...to be understood!

Best wishes for managing your dis-ease, and fighting it... that is a huge part of the success in my case, not accepting the negatives and going with what I have and CAN do! In the past 7 years I have managed to find enjoyment and peace in life ... although the pain and discomfort is sometimes discouraging ... and I cannot work outside the home.

Hope this helps you! I just simply don't worry about the docs who don't understand ... and take whatever help they DO give.

Another couple of things that help me...My faith sustains me more than anything...and good nutrition that I am learning through my nutritional m.d. Dr. Don Colbert ... you can google him for more info. To keep my energy level, i eat healthy proteins (small meals, frequently throughout the day) ... proteins such as free-range chicken, some fish (like salmon), and locally grown beef ... without hormones... that helps me feel better physically and mentally, as it seem if my blood sugar gets close to 100 i have symptoms of REALLY low blood sugar, like "depression" ... and "extreme" fatigue, and quickened heart rate. So, watching what and how often i eat really helps a lot! The fast heart rate also happens to me when I get overly fatigued. Well, I could write a book about how I have had to find ways to manage my life...but doc says I am doing a good job of it... but it has been a fight, and not always agreeing with some physicians opinions. I need their help, but I know how I feel...as you well know!

Blessings

Debbie

[lakemon in reply to DebKate]

I, too have scleroderma. I am a patient of the Johns Hopkins scleroderma Center in Baltimore, MD, USA. I am fortunate to have Dr. Fredrick Wigley manage my care. If you are interested they have a great website that can answer many questions. I have CREST, pulmonary fibrosis, and pulmmonary arterial hypertension so it does take a doc who understands how these relate. If you are interested, their website is

hopkinsscleroderma.org/

[DebKate in reply to lakemon]

Thank you, I'll take a look at the site! Appreciate the info...very much!

Debbie

[MrsH]

Debbie,

You need immediately to be seen in a Pulmonary Hypertension clinic. See phassociation.uk.com/treatm... for a location nearest you.

[DebKate]

Yes ... I have been seen by a specialist ... my heart lung blood pressure is not too high. No treatment necessary at this time. It is within normal reading still! Thanks for the message ... it something to keep an eye on!

Debbie

[DebKate]

Continued grace for each day, friends ... I have my ups and downs, as well... it helps to have understanding friends and family!

Thank you all for your input on this website. It has helped to know that I am not alone...although, I prefer we all be WELL!

[wartsandall]

Hi SandraMarie, I was diagnosed last year on CT scan with a minor bronchiectasis. I am always breathless and tire easily. I struggle to walk and talk....lol... and carry on with my daily routine..... I haven't had any active treatment; only a ventolin inhaler prescribed by my GP to help relieve my symptoms. I'm next due for my annual MOT, echo, lung function, etc... in January........ I haven't read any literature regarding the relation between scleroderma and bronchiectasis; but it does makes me wonder ??

I have never had any previous chest problems when I was a child or in my teens,.. and I was an athlete and a competitive swimmer in my youth..... my chest problems started shortly after I was diagnosed with raynauds, and scleroderma; when I was in my early 40's.............Take care, I hope you feel better soon x

[Pipsmum]

Wartsandall

My chest problems started in my mid 40's and came on suddenly. I was then diagnosed with asthma and six months later bronchiectasis showed up on my CT scan. I don't have Scleroderma, but do have Raynauds and Sjogren's, which were diagnosed a few years laterI've always had allergies and sensitivities to perfumes etc.

Fortunately, after a tough first year, my chest symptoms are stable. SandraMarie, I use Tiotropium (Spiriva) and Serevent daily, and Salbutamal as and when.

Kathy

[SandraMarie]

I do have a combined inhaler as I've been asthmatic all my life, and they did prescribe another inhaler (atrovent) to try to deal with the breathlessness whilst sitting still. When I questioned what this inhaler was for, last week (to remind myself) he said it was for the asthma??? Neither of these lessen the the Bronchiectasis symtoms or the sudden panting and breathlessness through no exertion, or with. I've an appointment with my rheumatology consultant in October so I'll see if he has any more answers. Thankyou for your reply. x

[SandraMarie]

As I said, I've been asthmatic all my life, and was living pretty much nrmal life with the inhaler, teaching classical ballet for 25 years. It has been really distressing that I have had to take the decision to stop, as I cannot demonstrate anymore, the coughing has worsened and I can't even give out instruction without getting extremely breathless. I think I've become scared lately as well, after hearing that my Grandfather was pronounced as dying from a massive Asthma attack. (no way do you stand up and then drop down dead from Asthma) I'm quite sure it was heart failure and , although he hadn't been diagnosed with CREST or anything else, in hind-sight (and having now knwn what is wrong with me) he did present very similer symptoms. I suppose all we can do is make the most of everyday, I just want to keep going long enough to see my younger son on his merry way in life. xx