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marsha

Back from the Rheumatologist

41 posts in this topic

Hi Marsha,

 

I shall be thinking of you on Thursday and really hope that your rheumatology appointment goes well.

 

Perhaps you could focus on looking forward to your son's graduation to help take the edge of the worry of your appointment?

 

Do let us know how it went on Thursday evening.

 

:emoticons-group-hug:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Good luck Marsha. Hope your news is helpful and ultimately so are the drugs.


Kay Tee

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What an experience... I was sat up at the front of the conference where my Rheumatologist presented me and my case. I was then introduced to Dr Hahn from the David Geffen School of medicine at UCLA. She asked me questions, and what bothered me the most, other doctors came up to touch, prodded and pawed me and asked me more questions. Then they discussed, Dr Hahn went through the things from top to bottom what she would do if I had come into her office. Others asked questions and offered advice ( AMAZING). I have been through half of what she suggested; she also mentioned that there was a 70% success rate with Botox, but 3rd parties (insurance) do not like to pay for it :(. They mentioned Right sided heart catheterization and Sympathectomy which she explained is cutting a nerve that runs into the hands so that it frees up the movement a bit and also then the Chemo drugs. As I was walking out a doctor in the back touched my arm and said "thank you so much for coming, you are a very brave young woman". I looked at my husband and wondered why? He said because you got right up there and let strange people examine and touch you, you answered personal questions.... well YA?.. So after the holiday my rheumatologist is going to call me and let me know what the next step is. So for right now I have no answers.... but soon I will. Thanks all, for the warm thoughts; they were much appreciated. I will let you all know when I find the final decision out!!

Marsha

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Hi Marsha,

 

Thanks for updating us with the results of your Rheumatology Seminar.

 

It sounds as though you had a really productive meeting with Dr Hahn at the conference and hopefully now your rheumatologist will be able to determine the best treatment for you to receive.

 

Just to give you some more information, I've included links to Right sided heart catheterization and Sympathectomy.

 

I do hope that now you'll be able to enjoy your son's graduation to the full!

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Marsha and thank you for letting us know how all went with your experience at the conference! I can imagine how off-putting it felt, having your person touched as it was; however, IF they come up with a good resolve for you, then it may not seem so bad, when you think about it, as time goes by.

Yes, you WERE very brave and deserve Kudos!

 

Now...you have your son's upcoming graduation to look forward to, which will be a very special happening for him AND for you! Congratulations to ALL of you :balloons: :terrific:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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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

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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

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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

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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

International Scleroderma Network (ISN)

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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.

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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

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ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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!

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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!

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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

International Scleroderma Network (ISN)

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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

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