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Rheumatology appt


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#1 jillatk

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Posted 29 March 2009 - 08:49 AM

I finally got in to see the rheumatologist - young fellow who seemed to kinda know what he was talking about, although I think I knew as much as he did from reading all the good info on this website.

So, he confirmed the diagnosis of Limited Systemic Sclerosis and Sjogrens. He said that the skin on my fingers is starting to thicken and harden, in addition to the swelling. Hearing that I have skin involvement was really the only thing that threw me a bit. I was thinking it was just swelling, and no skin involvement. He also informed me that I have some damage to my fingertips and nailbeds from the Raynauds. He ordered a bariatric swallowing test and an echocardiogram and then back to see him in a month. He did not know of any research going on or any clinical trails in Utah or anywhere else and did not seem predisposed to send me in that direction. He gave me Plaquenil, Nifedipne, Evoxac, and Omeprazole. I started them yesterday and now will wait to see how I respond.

He also told me things that I pretty much told him was not an option - like not to participate in high altitude activities. Kind of hard given that I live at 6,700 feet and climb to 14,000 feet every chance I get. I refuse to let this disease curb my favorite activities. So he recommended that I just really focus on keeping hands, feet, ears and nose warm. That I can do.

So I think that covers all the news. I will give this med regime a month and will see him again and then determine what I am going to to next. A friend of my brothers is in a clinical trial at U of San Francisco, so I might try to get into that. I am game to take whatever meds or do whatever procedure I can if that will help with increasing the knowledge and treatment of this disease.

Jill

#2 Jeannie McClelland

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Posted 29 March 2009 - 11:48 AM

Hi Jill,

Good news and bad news, I guess. It's always nice to know what you're dealing with even when it's something you'd really rather not have. I'm very sorry to hear about the skin thickening on your hands.

Did you get the feeling that the rheumatologist would be willing to partner with you in diagnostic and treatment plans? Aside from the clinical trials, that is. I'm pretty impressed that he wants to see you again in a month.

I was diagnosed simultaneously with systemic sclerosis sine scleroderma, ILD and PH, as well as a lot of GI problems and spent probably the first 6 months being very angry my doctor hadn't immediately started me on the most aggressive treatment available. It turned out he was waiting to see if my disease was progressive and if so, how rapidly. When the answers came back 'yes' and 'not too rapidly', he did start me on what was, for me, the best immuno-suppressant with the least harmful side effects.

I like your attitude about not giving up the things you love to do. I've just changed my O2 system so I can do high altitude back-country pack trips again this year, with a little help from my friends and some willing pack animals. I can just hear the O2 company now: "You want how many O2 cyclinders to do what??"

So three cheers for you!
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#3 jillatk

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Posted 29 March 2009 - 12:00 PM

I did get the sense that he is flexible and willing to do whatever he can to help me. I asked how many people he treats with this disease and he said "not many" since it is a rare disorder. I am pleased that I have gotten such good care from doctors - especially what I hear from other folks who are fighting to get any answers at all. My general practitioner picked up on the symptoms straight away and then set about to get tests lined up and specialists lined up. Even though I think it was slow, it probably was pretty quick given that I got the weird blood results in mid-Jan.

I think my doctor will be persistent in finding a regime that works for me. He said we will just keep trying things until we find what works and his approach is to start with the least nasty of the drugs and work our way up as we find what works and does not work. He also has specialists he prefers to work with and has his secretary lining up appts with those folks. Salt Lake City and the University of Utah has some of the best doctors in the West, so even though it is a schlep for me to get there, I am lucky to have the access that I need.

What trips do you have planned for the summer?? I find that scheming a wicked trip always brightens my mood. I am planning a high sierra trip in August sometime. I hope to get at least 3 14ners off my peak list. I am just planning a little longer to do it in than I would have previously, just to give myself some wiggle room if I get tired. I have not yet started using a pack animal, but I have a llama and some goats that would be great companions. I just have to start training them - don't know if I have already ruined them by spoiling them too much.

Jeannie, I have to tell you that you inspire me. Thanks so much.
Jill

#4 Jeannie McClelland

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Posted 29 March 2009 - 12:21 PM

Hi Jill,

I have to say I'm relieved by what you tell me about your rheumatologist. And you are absolutely right about us being lucky in our doctors. I think I mentioned in another post that the center of excellence where I go has a whole group of outside specialists that they like to work with. I've liked every single one of them that I've seen.

I'm planning on a couple of week trips up through the Absaroka-Beartooth Wilderness. There's a lot of variability in terrain and altitude to make it interesting and occasionally challenging. The one thing that could cause some alteration to the plans is how the fire season goes. It's been a dry winter up there.

To be honest, I actually prefer a mule to a horse for both packing and riding. I've never had the opportunity to see how alpacas and llamas work, but I've heard really good things about them. They seem to have the same intelligent curiosity and can-do attitude that mules do.

I wish you luck bagging your 14-ers! Maybe we'll meet at the head of a trail someday. That would be great.
Jeannie McClelland
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#5 jillatk

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Posted 29 March 2009 - 01:33 PM

Jeannie,
I hope we can cross paths someday. That would be fabulous. I assume you live in Montana? I have not ventured out that way to hike - always going to the Sierras, the Grand Canyon or to the Alps. It is on my list of places to go.

I hope other folks can find good health care in their area. It sounds like it is tough to find good doctors. My mom has RA and has a really great rheumatologist through UC Davis. He told my mom that I should get on a plane and go to China because China is a hotbed of research on these kinds of diseases. I am holding onto that possibility, but will stick with what I have for the time being. I think there is interesting stuff also going on in Europe. That is also an option as my husband is German (Bavarian if you ask him) and we still have a home there. It feels good to have options.

Jill

#6 Amanda Thorpe

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Posted 01 April 2009 - 08:50 AM

Hello Jillatk

I've just read this thread, great that your doctor is interested in you and how things go for you. Come back in a moth instead of 4 to 6 is very encouraging. As much as no one wants skin thickening, at least the doctor is aware of it and can monitor any progression.

I see that you and Jeannie still get plenty of activity! It's encouraging to read that other are still able to do things despite the disease. You go girls!!

Take care

Amanda
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