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Recently diagnosed Scleroderma, Raynaud's, ILD, and Rheumatoid Arthritis


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#1 Jiffy

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Posted 21 June 2014 - 06:05 PM

This past December I was diagnosed with Limited Scleroderma featuring Raynaud's and interstitial lung disease (ILD).  This all happened about 9 months after I was diagnosed with RA.  I'm wondering if there is anyone else who has these overlapping autoimmune disorders, and how they are dealing with it and what treatment they are doing.  Thanks so much!



#2 Shelley Ensz

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Posted 23 June 2014 - 08:14 AM

Hi Jiffy,

 

Welcome to Sclero Forums. As you'll discover, many of us here have overlapping autoimmune disorders.  See Systemic Sclerosis in Overlap. But there are so many autoimmune diseases that it isn't necessarily easy to find anyone else with the exact same combo; even then, they may have different treatment options depending on their age, allergies, or even insurance.

 

As you've probably already surmised, the more overlaps we have, the more challenging it becomes to treat any part of it, at least, that has been my personal experience.

 

Although I'm sure others may chime in with their treatment plans, please keep in mind that the most important thing of all for you would be to consult a listed scleroderma expert.  You really need an expert to get the best treatment plan. Some treatments for RA might be detrimental for scleroderma, for example see our page on Steroid Warnings for Scleroderma.

 

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Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 28 June 2014 - 11:34 AM

Hi Jiffy,

 

Welcome to these forums!

 

It's fortunate (or unfortunate, depending your point of view! ;) ) that you're requesting information about treatment for Limited Scleroderma, Raynaud's coupled with Interstitial Lung Disease..... step forward Yours Truly! -_-

 

I developed lung involvement after I'd been suffering with Raynaud's and generally feeling very off colour and poorly for at least eighteen months to two years and in my case it was a blessing, as I was diagnosed very quickly with Limited Scleroderma, which could possibly, had I not presented symptoms of ILD,  have dragged on interminably before I was correctly diagnosed and treated, as sadly many of our other members can testify. I was incredibly fortunate that my doctor and local consultant were both on the ball and referred me to The Royal Brompton, a top lung hospital, where my feet barely touched the ground before I was receiving aggressive treatment with Cyclophosphamide. I had 6 monthly infusions of the medication and whilst it's a drug to be treated with respect, in my case it was very successful. Several factors, I believe, caused such a dramatic improvement in my case; firstly the fibrosing organising pneumonia was caught very early, whilst it was still in the inflammation stage and therefore was reversible and secondly I was very fit and my lungs were in excellent shape to start with (non-smoker all my life), so although at one point my oxygen/carbon dioxide diffusion rate was down to 43%, I didn't actually need supplementary oxygen.

 

I would emphasise, however, that different drugs affect everyone differently and of course, sadly not everyone has such a successful outcome. I was diagnosed in July 2009 and since the initial Cyclophosphamide treatment was completed, I have been taking Azathioprine and also a low dose (and trying to get it lower!) of Prednisolone (Shelley's given you the link to our medical page on the Steroid Warnings for Scleroderma.) I don't currently take any medication for Raynaud's , as I'm fortunate that it's not really bad enough, thankfully, to warrant further treatment at this stage. I would also echo Shelley's excellent advice regarding consulting Scleroderma specialist; certainly the great improvement in my lung function was helped by the effective treatment I received from a medical team who knew their stuff! :)

 

Now that you've joined our community, I hope that you'll continue posting and let us know how you're faring. 

 

Kind regards,


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#4 Amanda Thorpe

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Posted 29 June 2014 - 10:45 AM

Hello Jiffy

 

Count me in! I have diffuse systemic scleroderma and localised scleroderma, diagnosed 7 years ago on my 10th wedding anniversary.

 

Based on my experience I would recommend two things, seeing a scleroderma expert and getting support from other people with scleroderma whether via the internet or a face to face support group.

 

I and my husband run such a group for sufferers and their partners, Jo and her husband regularly join us, I am glad of this for a number of reasons such as they're lovely people we're privileged  to call friends and Jo's story is just as important as everyone else's. it's important to hear about people who recover so well so quickly but remember that despite this Jo and Robert would have had awful experiences like wondering if Jo would survive and the side effects of the treatment.

 

I won't beat about the bush, it's a bumpy ride for sure with ups and downs which is why you'll want the above and we hope to see you here more and more, the people here have a wealth of experience that you can benefit from.

 

Take care and keep posting.


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#5 guntherperdue

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Posted 04 July 2014 - 06:11 PM

I found this site today while watching the World Cup playoff and looking for recommendations for doctors I might want to check out for some new conditions that I've developed; you all know what that's about. I got so fascinated when I came across this site that I've been reading for 6 hours. Most of the stories I've read sound so very familiar and reminiscent of my journey and experiences. First of all, I will be 67 years old in 3 months and I am a male which I notice is unusual when reading things on this site (by the way I have a twin sister and she has no autoimmune issues). So I guess I'll start with some background history of how it all came about.

 

I was a professional firefighter for 30 years and retired in January 2007; my entire life I was also in the building trade and construction in the residential and commercial sector; 45 Years of paint and glue fumes, formica, wood, tile, marble, granite, stone, etc. etc.; lots of really nasty stuff. I was still doing several re modelling jobs and had bought a house in November 2008 with my girlfriend; I was very physically active. And I will never forget the day my Odyssey began; everyone was excited and getting ready for the 4th of July celebration party and fireworks(I live in a New Jersey summer resort town) but I didn't feel good at all so I stayed in the house on the sofa watching television. That night I woke up and it was the beginning of my many nights of cold sweats; I mean we're talking looking like I was in a shower and having to change sheets. By day three it was so bad I couldn't even manage the stairs so I stayed on the living room couch day and night. I figured I had the flu and would tough through it. On day five my temperature was 102 and my girlfriend insisted I made a doctor's appointment. I did and he thought I probably had the flu or bad cold. That night I got so bad she called the doctor and he said go to the ER. They said I was dehydrated and looked like I had pneumonia. I was given some IV and other things and discharged a little while later when they thought I was stable. I went home but didn't get better; I couldn't move from the sofa, I couldn't do the stairs to go up to the bedroom. Well that was the start of a whole new existence for me and a lot of others close to me. At that time I was 186 lbs. and 5'10"  one week after July 4th. I was back at the doctor's and couldn't even drive. By now I was so weak, he ordered some test and referrals to different specialists; by six months later I had seen 15 different specialist doctors and had so many tests I lost count and I was only 156 lbs; I had lost 30 lbs. 1/6 of my body weight. I was never hungry and couldn't eat;  I lived on oatmeal to ensure a protein rich drink.

 

Things continued to get worse as time went on and no answers coming. In December 2009 I went to see a rheumatologist  at University of Pennsylvania Hospital (HOP) in Philadelphia PA., where more tests were ordered and a referral to see yet another pulmonary specialist  and more tests. This went on for 6 months with me making the 65 mile trip often twice a week. In June 2010 , 11 months after I got sick, I was told that I had somehow been one of the very rare few people who had scleroderma, interstial lung disease, Barrett esophagus, GERD, pulmonary hypertension and polymyositis; how much good news can a person stand in on day? We did know about GERD and pulmonary hypertension before this. It was now the middle of June 2010. I weighed 126 lbs. 1/3 of my body mass lost because of the myositis they say. I really thought I was just going to waste away before much longer. I was started on Cellcept (mycophenolate) 2500 mg daily plus 60 mg prednisone a day. By October I was going mad from the medicine, I was truly going crazy and all around me could tell it, I was not a nice person by any stretch, my brain was mush and I couldn't remember anything.

 

As things happen in our lives out of the blue an opportunity came up that only happens rarely if ever in our life. An old friend of mine had a boat he had bought and needed to take it to Florida and needed help. Very long long story short I went and had to keep a notebook of when I took which medicines, so I didn't miss all the doses I was now on. Longest best trip ever I've taken on a boat; I gained 25 lbs. and my face got fatter but I was more and more affected by the prednisone. I was losing my sense of reality in every sense; I could see why they talked about the athletes on steroids going nuts; you really can't control it and you know you shouldn't be doing it, but can't stop. Well enough about that, so after operations for carpel tunnel which I probably didn't need because it was possibly the Raynauds and two operations for cataracts as a result of the prednisone, I had to have an operation last April for a bladder duodenum fistula that involved removal of twelve inches of my intestine but my bladder healed okay. Twice I've had a test for swallowing issues and now they want to do one to see what is happening after food gets to my stomach. On average I throw up in the middle of the night two or three times a week if I've eaten after 5pm and I think only certain types of food but I'm still working on figuring that out. I had gone down to 128 lbs. about a year ago but have gotten to 140 for several months now and hope to keep it. I still have no desire to eat, ever. I watch food television and see it in magazines, but when it's in front of me I just don't  feel like eating . I think maybe it's because I mentally know that I'm just going to get indigestion and throw up later anyway.

 

I have been on 5 mg of the prednisone for three years and my mental state is much much better, but it was a bit to late to make up for my problems earlier with my girlfriend, but we still keep in touch. I kept telling her she's way too young to waste it with a sick old man. On that note did anyone have the sensation that they couldn't stand someone touching or holding them?? I couldn't stand to be touched.



#6 Shelley Ensz

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Posted 05 July 2014 - 08:06 AM

Hi Gunther,

 

Welcome to Sclero Forums, and thank you for sharing your story.  As it happens, when men get scleroderma, it has usually been caused by occupational exposure(s) and it sounds like that's what happened with you.

 

Relationships are often disrupted or even toppled with any chronic illness. Some people can't handle their loved ones being sick and sometimes as patients we aren't handling things well.  It is easy for us to become self-centered, in denial, depressed, irritable, what have you, and that puts even more stress on relationships. It has helped many of us to review our attitudes with a counselor. It is possible to have healthy relationships even when we are sick -- but it does take a lot more effort, attitude adjustments, and insight. Sometimes we try to drive people away, either consciously or unconsciously.

 

Anyway, I'm glad you found us, and hope that you continue to find ways to cope fairly well with scleroderma and all the interesting challenges it can bring our way.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 judyt

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Posted 05 July 2014 - 01:55 PM

Hello to you,

 

Nice to hear from you.   Funny that you have had such a long drawn out saga getting to a diagnosis.   Not funny really, but not at all rare here on these forums.   My own journey was at least 37 years plus another 10 which were in my childhood and didn't get counted at tirst.   Never mind, no use crying over what might have been, we just need to pick ourselves up and get on with it.

 

As you have found, there are plenty of us here who will sympathise and empathise with you and encourage you to keep pushing onwards to a better outcome, whatever that might be.

 

You imply your medications are not necessarily helping things as much as you would like and I can only say in answer to that you are not the only one.   Sometimes it just takes a little tweak to make a difference.   I have GERD, as most of us do, and they tell me it rises to about the 3rd vertebrae, I.e. nearly in my mouth, when I lie down but I rarely notice it.   That was until last week when I had several days of bloating and acid taste in my mouth, it turned out to be that I had been dispensed a Generic form of PPI.   They say these things are 'exactly' the same as the original but you can't tell me that!!

 

Keep on looking for the best match between you, your doctors and your medications and we will all be hoping for on improvement for you.

 

Best wishes from the upside down side of the world

Judyt



#8 Joelf

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Posted 06 July 2014 - 07:42 AM

Hi Gunther,

 

Welcome to these forums!

 

I'm sorry to hear that you've had such a dreadful time en route to finding a diagnosis; but as the others have said, unfortunately Scleroderma and other autoimmune conditions are very difficult beasts to deal with!  :unsure:

 

Currently, I take 5mgs of Prednisolone and can empathise with the peculiar state of mind induced by this rather bizarre drug; in my case I was in a permanent state of euphoria and it had me almost swinging off the chandeliers (I think it tends to emphasise any natural tendencies in character and I have an extrovert personality anyway! ;) ) Rather wearing for my long suffering husband!!  :blink:  I can imagine how 60mgs would make you feel!!

 

Now that you've found us, please do keep posting and let us know how you're feeling.

 

Kind regards,


Jo Frowde
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#9 Amanda Thorpe

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Posted 08 July 2014 - 04:42 AM

Hello Gunther

 

Well, at least you have found us now.

 

My first 12 to 18 months after diagnosis I had two emotional settings, asleep or hysterical...ask my husband he will confirm it.  I think it's common to anyone diagnosed with a life changing condition that's unpredictable, relentless etc. It's a lot to contend with, the impact on ourselves, then add in the impact on our loved ones, side effects, pain, fatigue, loss of mobility and all the other wonderful symptoms. It's a wonder they don't issue straight jackets at the point of diagnosis, that and elephant size tranquillisers for our loved ones. It is unrealistic to expect we would carry on regardless, no one could.

 

Anyways time marches on and here we are.

 

Take care.


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