Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Back from the Rheumatologist


  • Please log in to reply
40 replies to this topic

#21 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 26 May 2012 - 05:43 PM

Marsha,
You post brought back a memory that was buried. When I had my crisis the teaching hospital asked if I would "present" to a group of medical students. So like you, I sat (in a wheelchair) at the front of the room while the doctors showed my hands, skin, they asked me my symptoms before sudden onset. Mind you, this was after coming out of intensive care and on dialysis! The students were very appreciative and came up to me after and thanked me, now knowing how scleroderma presents itself (sometimes.) We are a rare breed and most of the time a doctor has never seen one of us. I wish I knew what doctor did the presentation, it was not my scleroderma specialist. Hmm...maybe I can find out.

Search "Right Heart Catherization" in the forums and info from others will come up. There are photos of the sympathectomy on the site, search that also.

Good luck and WE ARE ALL BRAVE! Thank you becuse you have now helped others.

miocean
ISN Artist

#22 marsha

marsha

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 157 posts
  • Location:Maine

Posted 27 May 2012 - 08:34 AM

Thank you all and I will keep you all informed when my rheumatologist calls and lets me know what the next step is. We are all brave but if we share our "story" with just the right person maybe, just maybe, something good will come out of it.
Talk to you all soon
Marsha

#23 marsha

marsha

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 157 posts
  • Location:Maine

Posted 10 July 2012 - 09:02 AM

I am going for a third opinion on the chemo drugs. This time to Boston to the University, they have a sclero clinic. My rheumatologist is so worried about putting me on the drug he wants to make sure it is the right choice at this time. Which I am happy about!! I go on the 20th and was told it will be a 2-3 hour appointment. I am very anxious and excited to see what this may bring, as I DONT want to start this drug I also can not go on with the aches and tightness in my hands and feet that I am experiencing. Hopefully maybe they have a magic drug that won't be dangerous to take :) (one can wish) I hope summer is finding everyone warmer and happier for now. I will keep you all updated when I come back from the appt. I am so happy for the support that we receive here.. It sure makes things better..
Marsha

#24 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 10 July 2012 - 10:53 AM

Hi Marsha,

It certainly sounds as if your rheumatologist is on the ball and is really considering the best course of action for you. Sometimes with regard to taking medication we do have to weigh up the pros and cons of each drug. My consultant really wanted to reduce the dose of Prednisolone that I take, but unfortunately it caused my lungs to have a little flare up and so we reluctantly decided to keep the dose going at 10mgs and then gradually reduce by 1mg after a another month to see how I get on. I was very reluctant to have cyclophosphamide which is a chemo drug, but I have to admit that without having it my lungs would be in a much more sorry state than they are now.

Please do update us when you have your appointment.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#25 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 17 July 2012 - 12:37 PM

Marsha, you have me sitting on the edge of my seats, waiting to see if they have a Magic Drug for scleroderma, with no side effects. I do hope they find something that is suitable for you.

Generally speaking, the chemo drugs when used for scleroderma are at lower doses than when used for cancer, so you don't have to worry about your hair falling out or being terribly ill, etc. But still, any treatment that we have doubts about trying makes a second opinion worthwhile. I'm eager to hear how it all goes.

: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.

#26 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 18 July 2012 - 03:21 AM

Hello Marsha

How goes it? Shelley's right any drug brings the possibility of side effects with it, it is unrealistic to hope for one that doesn't. Remember that scleroderma is progressive and the sooner you treat it the better. If you have the chemo drug once it's over so will the side effects but the benefits will continue.

Take care and keep us posted.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#27 kselibrary76

kselibrary76

    Bronze Member

  • Members
  • PipPip
  • 14 posts
  • Location:NW Chicago burbs

Posted 18 July 2012 - 08:22 AM

I am going for a third opinion on the chemo drugs. This time to Boston to the University, they have a sclero clinic. My rheumatologist is so worried about putting me on the drug he wants to make sure it is the right choice at this time. Which I am happy about!! I go on the 20th and was told it will be a 2-3 hour appointment. I am very anxious and excited to see what this may bring, as I DONT want to start this drug I also can not go on with the aches and tightness in my hands and feet that I am experiencing. Hopefully maybe they have a magic drug that won't be dangerous to take :) (one can wish) I hope summer is finding everyone warmer and happier for now. I will keep you all updated when I come back from the appt. I am so happy for the support that we receive here.. It sure makes things better..
Marsha


You inspire me. I like your pro-active approach. I've been in the valley of sad so long, I'm going to try to claw my way out of it...reading about people who stay the course and look at all the options make me feel stronger about all this. Thank you!

#28 marsha

marsha

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 157 posts
  • Location:Maine

Posted 21 July 2012 - 05:07 AM

Kselibrary76 I am glad I could inspire you even if just a bit.. That makes me feel wonderful :)
Well I saw the "sclero specialist" yesterday. And now I feel worse than I ever felt. Although I am super happy that I will not be going on the immune suppressants. He said some things that I don't understand. He said I am probably at the worse of my disease and that I am going to start to get better?!!! Although this makes me ecstatic to think, it goes against everything I've read, and my doctors have told me. I left that appointment feeling worse than I have in years, apparently even though last summer my skin tightening score was a +1 and now I am a +9. I can barely close my right hand, can't open chips, mayo bottles, scrub and the constant ache that runs from my fingers into my wrists. Apparently is caused because I am overweight "as I am sure no one in this room can dispute" HIS WORDS... I must watch my salt intake and get a scale that measures my BMI?? I have been around the same weight for 10 years and I have progressively gotten worse, my hands have been bothering me for at least 3 months not to mention my feet and ankles. HELP.. I'm ready to start crying.. Am I going to get better? If so I am so happy I have no words that can explain that... but it goes against everything I have been told for 3 years!

#29 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 21 July 2012 - 02:49 PM

Hi Marsha,

How very confusing for you to receive such conflicting advice!

It's possible (and please bear in mind that apart from a now out of date first aid certificate, I have no actual medical training ;)) that he might be referring to the idea that Scleroderma could settle down and stablise after the first five years. My consultant did mention similar to me when I was first diagnosed and I queried whether I would be taking the strong drugs for the rest of my life. However, I know we do have other members who've been diagnosed for at least five years and they are still suffering with new complications (step forward, Amanda!) and unfortunately one of the little idiosyncrasis of Scleroderma is that it does affect everybody differently, so it's impossible for him to generalise. I feel that doesn't excuse his rather insensitive remark though and also it does sound like he's stating the obvious by suggesting that you cut down on salt and watch your weight.

I'm very sorry to hear that you're feeling despondant and unhappy; perhaps you could go back to your original rheumatologist (the one that referred you) and explain that you're feeling very confused and could he/she explain the Sclero specialist's diagnosis a little more clearly to you; particularly the part where he's suggested that it could be your weight that's making the symptoms worse and that you've been the same weight for the past 10 years with no other effects until recently.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#30 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 23 July 2012 - 07:50 AM

Hi Marsha,
Although the difficulty with scleroderma is that we all present differently, I was told by an expert that I follow the "typical pattern" of sudden onset diffuse scleroderma. That being sudden skin hardening all over, organ damage, a gradual improvement and then plateau. Picture going up a steep hill, coming down part way and then on level ground. That is exactly the way my path with the disease has been going and I will be incredibly happy if I stay on level ground but as we all know...one never knows.

After 6 months of onset my skin score was a 45, I was in complete renal failure and on dialysis, had interstitial lung disease with oxygen therapy, Raynaud's, GI issues, calcinosis and scleradactyly. I couldn't walk or bend my body was so stiff. I was so stiff and tight that clothing hurt my body. I cried the day the ocean hurt my feet.

Gradually my skin softened and I am now 0-3 depending on the day. I can bend down!!! I had a so far successful kidney transplant. I went to hand therapy for 5 years and my fingers have a slight curl to them but I can almost make a fist, I cannot open most jars but have some assistive aids and scissors everywhere to help me open bags, wrappers and other things. I could barely hold a pen to write and now I am painting again using inks and brushes. My fibrosis has increased in my lungs and the GI issues are ongoing. The Raynaud's is worsening. I have extensive calcinosis on my buttocks that got a little better right after the transplant but 2 years later is incredibly uncomfortable again, fortunately not ulcerated. So there has been some major improvement, especially a working kidney, but some worsening as well.

I did not take immune suppressants during most of this time. One injection of methotrexate set off the renal crisis, and two infusions of cyclophosphamide made me go toxic and put me in the hospital for days. Some of the improvement began before the transplant, and I am now on immune suppressants for anti-rejection.

I have been overweight most of my life, up and down, and doctors are always noting that my BMI is too high. I believe they all just have to tell you that and weight is a sensitive issue for one who has struggled with it all her life. Then I read the posts of those who have lost weight and can't gain, or are on feeding tubes...and wonder...

I did the same thing you did after my transplant and increase in lung fibrosis and went to several different specialists. I started freaking out that now that I had a kidney I was going to lose my lungs. My best advice to me (and you) is to take it as it is for now and do what you can to deal with the issues that affect you most. Can you find a good Occupational Therapist to help you with the hand problems and give you information as to aids that will help you?

Hang in there, it's ok to get frustrated and depressed. A good therapist can be extremely helpful as well. Keep posting and let us know how you are doing.

miocean
ISN Artist

#31 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 23 July 2012 - 05:22 PM

Hi Marsha,

Hmmm....I see several things going wrong from your post. For one, your "sclero expert" appears to not be getting the message that your illness is currently progressing. Blaming it on your weight, when your weight has been stable for a decade, just plain doesn't make good sense to me.

If he wants to motivate you to lose weight, that's fine, but it should be discussed separate from your scleroderma issues. My doctors always mention my weight (as they should) however all their harping and all my efforts and many diets, and even my fancy electronic BMI scale didn't budge my weight one iota (until a recent gain/loss, see below).

I'm not sure if you also have Hashimoto's thyroiditis, but most of us do, and that alone can make weight a never ending battle, just to stay the same weight, not to mention lose it. (And if you don't have it, you should be thoroughly checked for it, including tests for thyroid antibodies even if your TSH is normal.)

On top of that, many of us are on medications that cause weight gain, and if you are, you should be highly commended for managing to not gain, under the circumstances and under the stress of illness, too. Check out all your prescriptions with your pharmacist. Common offenders are meds for depression, pain, high blood pressure, and even for migraines. At one time, I was on FIVE meds that all had weight gain as a common side effect, and my doctors hadn't warned me about any of them. I was recently on one (gabapentin/neurontin) that caused a 30-lb weight gain in 4 months (after being stable for 20 years) and I still have a few pounds to go on losing it all.

The normal course of scleroderma is for it to wax and wane; in other words, for it to get worse, and then to get better, even without any treatment at all. My general impression is that many of us have gone through repeated waxing and waning, getting better in some ways but worse in others (much like Janet's description). Sometimes the illness mysteriously reverses itself, with even all the skin hardening disappearing, however, we are usually left to deal with whatever internal organ damage and disability that has already accrued.

The thing is, there is no way of knowing either if or when any of us will stabilize, or even improve. It's not like there's a specific calendar of events, and there are certainly no guarantees for any of us as to which way things are going to go. I'm sure you remember Sherrill Knaggs? Before she passed away, her skin tightness had started relenting, from her head right on down, and she was doing so much better. And then she up and died (and we all miss her to this day). Whereas others of us have reached a plateau (generally not a pleasant one, but a plateau nevertheless) and others have experienced relentless progression (reference Amanda again) despite doing everything humanly possible to quell the illness.

I'd recommend that you visit your primary care doctor, pronto. Tell them MY concerns (print this out if you want and take it with you) about your expert not listening to you and ask them for a referral to another scleroderma expert.

Also take the time to review your medications with them and change any (if possible) that might have weight gain as a side effect. Ask them what a realistic weight goal is for you, considering your health and your meds. It can be terribly challenging for even totally healthy people to lose weight and keep it off. Ask for a referral to a nutritionist if you think that might help. Sometimes a tiny change (tea instead of coffee with cream, for example) can be all it takes to move the scale in the right direction.

Also make sure you have optimum sleep and no sleep disorders, since sleepiness and fatigue are a huge culprit for weight problems, and quite common in scleroderma, too.

For a good laugh...one of my doctors (years ago) said I had to go on a diet and gave me a sheet for a 1200 calorie diet. I couldn't believe she would let me eat THAT MUCH food and calories, as I just maintained my weight by eating a lot less than that. My eyes got great big as I looked at the delicious menu and I said, WOW, you mean you'll let me eat THIS MUCH?! Whereupon she grabbed the diet form back from me, and wouldn't let me see how much I could have been eating, with her blessing and encouragement. <LOL>

Marsha, I know it's very hard but you absolutely must pick yourself up from this and dust yourself off, because if you do nothing and collapse into depression, they will almost for sure put you on another med that will cause weight gain!

So a better plan would be to deal with it all, and with us by your side, you CAN do it, right? I know it's disappointing to have to start over with another expert, but I also think you need to because it does not sound to me like you are stabilized, yet. And yes, I am not a doctor, I have no medical training at all, but this should sort of be in no-brainer territory. From your description, it sounds to me like you should be partaking of occupational therapy for your hands, at the very minimum.

So yes, you probably are going to get better. You probably are going to get a better scleroderma expert (yes, there are bad ones, and even good ones who have a bad day, but I don't recommend you chance it again because this has put a big dent in your usually chipper style.) You probably are going to get better care for your hands.

You MIGHT find a way to lose a pound or two, but if you have dieted your way up to this weight, don't let sadness or worry over this pack on a few more. Resolve to change the things that you can change, and not worry about things you can't. You CAN change your scleroderma expert. You CAN work with your primary care physician and review your meds, your thyroid and your sleep. You CAN get referred for occupational therapy by your primary care physician.

:emoticon-crying-kleenex: Cry it out., too. It's okay to be upset by this turn of events -- anyone would be! And then use this as a sterling opportunity to improve your health, and your healthcare team.

: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.

#32 kselibrary76

kselibrary76

    Bronze Member

  • Members
  • PipPip
  • 14 posts
  • Location:NW Chicago burbs

Posted 24 July 2012 - 11:11 AM

Marsha,

Just know that me, a newbie is watching your struggle and fight. I admire your plunk and ability to keep on keeping on.

Learning lots too.

Karen

#33 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 24 July 2012 - 12:58 PM

Oh dear. I read over my last post to you Marsha, and feel like I came on too strong. My heart just ached for what you are going through, and how your new concerns were not addressed (at all) by blaming it all on your (stable, even if high) weight.

What I'd like to know is, how your appointment would have been handled if you had been at a normal, or even low, weight? I guess I still feel perturbed by this.

I just want you to know that I didn't intend my message as a way of telling you how to handle it. I should have phrased it more in the manner of, how I would have handled such a situation, or more as a gentle suggestion of a possible way to handle it.

Anyway, I just want to give you more warm hugs, and to let you know that we all care how you are doing....and especially, me. Let us know how things work out, okay, even if it isn't according to MY ideal plan.

: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.

#34 marsha

marsha

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 157 posts
  • Location:Maine

Posted 24 July 2012 - 03:41 PM

Shelley,

You did not come on too strong!!! My best friend who went to the appointment with me said the same exact thing. She said I don't think he was truly listening to you and I agreed. As soon as I get home I am making an appointment with my rheumatologist and seeing what can be done. And Karen I am glad that I am still giving you some inspiration... Thank you all.

The fight goes on!!

Marsha

#35 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 24 July 2012 - 05:53 PM

Oh whew! Thanks for letting me know, Marsha. I sure hope your rheumatologist is able to be more helpful.

: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.

#36 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 30 July 2012 - 04:52 PM

Hello Marsha

I have just read your post and I am so sorry and so angry. At your best eh? Then why are your hands getting worse etc?

I have said this before and because I have a bee in my bonnet about it I'll keep repeating it, when I first joined the scleroderma community I heard that scleroderma could plateau within 3 to 5 years but that's not my experience and I don't know anyone who has experienced that timetable. I know of people who have had major flares after 12 years, had total tight skin for 8 years and so forth and then there's me, worse at year 5 than year 1. I call this plateauing thing a medical myth, my opinion as a layperson of course! I know it can wax and wane as in get better, get worse but this 3-5 year thing? No.

Make the appointment with your rheumatologist and I am sure it will go much better but you might want to write to the offending rheumatologist and ask them to explain, in layman's terms, how weight affects hand dexterity and how you can be improving if your skin score isn't?

Too many times doctors get away with rubbish and if we choose not to complain we could always challenge what they say. I currently have complaints on the go against 2 doctors, not something I enjoy but I just had to stand up for myself. The outcome for me is almost irrelevant, it's that I stood up and said NO!

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#37 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 30 July 2012 - 07:19 PM

Amanda, darling, why don't you tell us how you REALLY feel? (Just kidding!)

I'm relieved to see I'm not the only one who turned hopping mad about Marsha's unfortunate doctor visit. Marsha, I'm hoping your rheumatologist appointment goes a little better.

: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.

#38 marsha

marsha

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 157 posts
  • Location:Maine

Posted 30 July 2012 - 08:14 PM

Amanda & Shelley,
I am still ripping over that whole ordeal!! I wanted to prove a point to myself, so I have really limited the amount of sodium intake and guess what... Yup my hands still ache!!! The other thing I was curious about, my scleroderma doctor had told me that I could NOT give blood or be a organ donor; the "specialist" I use that term loosely, told me go ahead I can?? But I just read on this site that you can't? I have always been a donor and it is on my drivers license, should I take it off? I am still on vacation visiting my Mom but will be headed back to Maine at the end of this week and Can't wait to go see My rheumatologist. I will def let you all know what the outcome is.
Love to all
Marsha

#39 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 01 August 2012 - 05:16 AM

Marsha, my understanding is that having systemic scleroderma excludes you from being an organ donor. I can't imagine many people queuing up to get my heart can you?? I also understood we can't be blood donors because of medications we take, here in the UK if you so much as take an over the counter pain killer you can't donate so that rules me out and you (if you were in the UK) and just about everybody else! Well that's how I understand it anyways!

Shelley, yup I have a way of making my feelings clear...sometimes too clear without realising it! :emoticon-dont-know: :emoticons-yes:

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#40 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 01 August 2012 - 10:12 AM

Hi Marsha,

On our page, Tattoos and Blood Donation, I quote: "People with systemic scleroderma cannot donate blood." Period. End of story.

Body or organ donation is a little trickier. See our Organ Donation section. Basically, anyone and everyone can sign up as an organ donor and leave it up to the transplant team to decide whether or not they can use any of your various parts.

To keep it simple, I've signed up as an organ donor, however, odds are pretty great they wouldn't want any part of me. But I figure, that's their problem (not mine) and if anything is usable, I'd like them to feel free to use it. Of course, this is an issue near and dear to my heart, since my husband is a lung transplant recipient.

: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.