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Biomarker for Diffuse Scleroderma skin has been discovered!


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9 Hours At U Of M


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#1 Vee

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Posted 19 December 2006 - 06:25 AM

From: Vee19622 (Original Message) Sent: 12/19/2006 12:06 PM
*Warning, it's a long one!

At 8:15 a research coordinator came in and asked if I would partake in a survey study for the next 10 years or so! I told her, "Sure, if I'm still around!" I don't think she thought it was humorous! It was too early for me, I had already been there for almost an hour! So, I guess that's an easy one, they'll send me forms to fill out every 6 months and I just send them back, they are hoping to get atleast 400 sclerodians involved. At 8:30, in comes Dr. and guest visiting from Beijing, or however you spell it. So I'm put on display for him. While he is feeling me out from top to bottom, I'm firing questions at my Dr. about this Rituxan. She tells me that we HAVE to do something for my "arthritis" now! I told her that I didn't like any of those drugs that end in "xan", it just reminds me of how toxic they are! But she said that Rituxan is probably my best bet for aiding in slowing down my immune system and helping with the joint pain and erosive arthritis. She also badgered me into starting the lowest dose of predisone for the pain in my joints. She said it will be 10x more effective than the motrin 800's. So I told her I'll try it, but as soon as my face gets as big as my bottom, I'm stopping it! She said that was fine, I can quit anytime I want! I asked her about a handicap tag, and she said "NO!" I want you to walk! I told her so do I, but with these ankles, by the time I get into the store, I pretty much have to turn around and leave, and the winter cold is coming and just takes my breath away and makes me cough til I gag. So she gave me a temporary one, and we will reavaluate the pain in 6 months! She also said she talked to my "other" rheumatologist, and he wanted to start me on cellcept, but she is not happy with that idea, because that would be to treat my lungs moreso, and she's looking to treat my joints. So, now that I'm late for my 9:00 appt. for my hall walk, which is 4 floors down, in the basement, and in the next building! They said they'll get me a wheelchair to get there, so I'll be well rested. When I leave and go into the hall, there is the wheelchair.....by itself! I came back in, and the nurse looks at me and says, are you here alone?, Duh.......Yes, just me and my bag full of half of my house! And if you want me to use that thing I better start walking, it'll be faster! 9:20...hall walk....my O2 dropped more than last time, but I walked 600 ft more, and felt better doing it than last time. It must have been the motrin kicking in, even my ankle wasn't too bad. But the tech following me with all the machines was huffin' and puffin' when we got back the room. I told him he needed the O2 more than I did!...Not sure he appreciated that comment! On to xray, I had to be there before 11:00 for the chest xray, because my VQ scan was at 1:00 and they said it had to be done 2 hours prior to the scan. Also had my feet and ankles xrayed. Oh yea, xray was back up on the 2nd floor of the first building I was in. And my taxi left! Ankle is still holding up surprisingly well. At least the lab work I had to get done was only one floor directly above me, and right next to the elevators. So I go into labs, and she hands me a urine cup, uh oh! doctor only said she was gonna run my RA factor, sain nothing of urine! And it was cold in the basement. Bladder was empty! So she asked me if I was still doing more testing. LOLOL! I said sure it's not even noon, I still have half the day ahead of me. She tells me she'll leave the cup at the front desk, and to come back whenever the urge hits me!....sooooo....now I'm hungry! Back to the 2nd floor in the other building.....Soup and a corn muffin, berry flavored water... and a thousand forms to fill out for the research gal.........Back down to the basement for VQ scan. Had to take off my sweater because of the metal zipper, and it's cold in the basement! Didn't deep enough to get the radioactive aerosol stuff far enough into my lungs, so had to repeat that. Into the scanner for 16 min. Then inject the same radioactive stuff, only more concentrated, into a vein.....yea, right!! LOL. What vein? she found one on my hand, but it only took half the solution. She wasn't sure what happened to the rest of it, as it wasn't leaking onto the floor or down my arm, and by the burning in my hand, it must have emptied into that.
8 more minutes in the scanner. Then wait til the doctors have looked at the results, incase you have a clot, cause they won't let yo leave if you do. 15 minutes later, I'm declared all clear. And what luck! my next test is a 2-D Echo which is just next door, but I'm in the basement and it's cold....Oh Man! I gotta pee!!! ARGGGGGHHH!! Back upstairs to the 3rd floor in the other building to give them my recycled berry water!! Sorry! Limping BACK downstairs to the basement...I had people passing me by with thier walkers by this time! Fell asleep waiting for the tech to set the machine up, until she put the ice cold gel on my chest! Yeeowza! I'm awake now! That was only about 20 min. All Done! Now if I can only make it back to my car......in the parking garage.....in the other building! Oh yea, and somewhere in there I had to go back to the first office I was in and drop off the research packet.
Sorry, I told ya' it was long! I was pretty wiped out by the time I got home. It only took me just short of an hour to drive home which amazed me since it was rush hour! My driving angel must have been with me!

I'm wiped! Warm and Happy to ya's all! xo Vee
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#2 Heidi

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Posted 19 December 2006 - 06:32 AM

Hi Vee,

All I can say is WOW!! What a day! Did you get the results of all of your tests right away or are you wating on some? And, when will you start the Rituxan? Is it an injection or pill? Sorry for all the questions......I do so hope that the new medication regime will work wonders for you and your feet and ankles quit hurting so much!

Do keep as posted as you learn the results of your tests and as you start your new meds. Sending you a big hug!

Warm wishes,
Heidi

#3 Vee

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Posted 19 December 2006 - 06:54 AM

Hi Heidi,

The only thing that I learned right away was that I walked 600ft more than last time, and that I don't have a blood clot. The rest of the tests I'll have to wait on. I'm even sure when that will be. I guess I forgot to ask. As for the Rituxan, it is an infusion. I told the doctor, I'd like to wait until I have my rt. heart cath after the holidays, and see what comes of that test. And then they(all the doctors) can put their heads together and decide on the best action for my situation.

thanks for the hug, I feel better already! :D


Warm and Happy your way! xo Vee
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#4 janey

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Posted 19 December 2006 - 11:11 AM

Good grief!!! And I thought MY day was bad last Friday! You win! :lol: Where are our minds when we think it's a good idea to schedule everything back to back? Up and down, over and out, back in, back up, back down. Hospital and clinics are not built for the patients!! I hope you had the whole next day to sleep. You certainly deserved it.

So what was this 10 years survey about? Was it specific to sclero?

Congratulations on not having the blood clot and being able to walk further. That's big news! I hope the rest of your test show improvements and that the heart cath show a very low PA pressure and no blockages!

Yes, the update was long, but it well worth reading. It made me smile and be thankful that it wasn't me. :P Hopefully will next visit will be more relaxing and A LOT less hectic.

Big, big hugs,
Janey

#5 Sweet

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Posted 19 December 2006 - 11:28 AM

Vee, if I can stop laughing long enough to post a reply to your adventure, it will be a miracle! You do have a way of writing. We better have you start a blog along with Barb.

Seriously, your testing sounded out of this world! That is just too much at one time!!! Sounds like the place also needs a consultant (me) come in to perform an assessement for the "patient redesign visit" My goodness!!!! They have it all wrong!

I will be curious to hear how all of your testings came out, please let us know. Please also let us know how the Rituxan works for you. Oh ...... and also let me know if your face gets bigger than your bottom. Oh, here I go on a laughing jag again. You are a riot!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Sarahp

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Posted 19 December 2006 - 12:41 PM

Vee

I want to tell you my experience with Rituxin infusions.

I had two Rituxin infusions three weeks apart. This was one year ago. I have Lupus with an overlap of limited Scleroderma. I was being treated with oral cytoxin and went to another rheumatologist for a second opinion.

I was having leg ulcers from antiphospholipd antibodies plus my high ANA 1:1280 and high dsDNA 1:320 plus other abnormal blood work made me a good candidate for Rituxin. The second rheumatologist was a lot more knowledgeable about the newer treatments and I switched to her. Best thing I ever did.

The problem is that it is very expensive. It is considered off label for lupus. My insurance is a PPO and did cover it. One infusion cost about 12,000. Are you having it for RA? It is now covered for that if other drugs have been tried without success.

But Rituxin is a mixed bag. It kills the B cells but in 6 months the B-cells come back. More Rituxin is needed or in my case Cellcept is being tried.

It helped me greatly to get my CBC normal, ds-DNA is now 1:40. But I am on all the same medicines I was on before plus 2000mg Cellcept. Several people have used it in a Lupus forum I am on and are experiencing the same thing after 6 months. More Rituxin is needed or Cellcept.

I had high hopes for a remission. So far I have not heard of that happening to anyone. I am a lot better but am still on 8 medicines.

Sounds like you had quite a day at U of M.

Sarah

#7 emmie

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Posted 19 December 2006 - 06:39 PM

Vee,
Amazing that you survived the day and still were able to drive yourself home! Congrats on the longer walk; I hope the results that start coming in are just as encouraging. Please be sure to update us as you get them.

Sarah, thanks for posting you experience with Rituxan. My rheumatologist had mentioned this to me 2 months ago. I knew it was quite costly and since I'm still waiting on a decision from my ins. company to my appeal for covering 2 ivig infusions (which she was supposedly aware of), I declined. It is interesting to hear the long term results.

emmie

#8 LisaBulman

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Posted 20 December 2006 - 02:45 AM

Hi Vee,
What a day! I am exhausted just reading about it! I was surprised when your dr didn't want to give you a handicap tag for your car. Just because you don't walk forever to get to the store, you are still walking forever once you get in there! I'm glad she decided to so even if it is only temporary.

Please let us knoe how your tests turn out and what you decide to do for treatment. Any new treatment is scary and it is hard to make decisions until you have all the facts. Even then, the facts may scare you even more!

Hugs,
Lisa
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#9 Vee

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Posted 20 December 2006 - 02:54 AM

Sarah, Thank you for your experience with Rituxan! I hadn't heard of this one til just this past week. And, yes, it will be used for RA. So hopefully my ins. will cover it.

Sweet, They definitely could use a coordinator to help all day testing be a little bit easier on us! Have you applied for the job yet? I'll write you a letter of recommendation! :)
]
Janey,The study title is :
Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma (PHAROS)
Georgetown Univ. is the coordination Center, U of Mich. is one of the co-investigating sites.
The study purpose:
The purpose of this study is to develop a registry of patients with scleroderma who are at high risk for PAH or who have the recent diagnosis of PAH.

Thanks again for all the input. You guys are priceless! xo Vee
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#10 Patty

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Posted 21 December 2006 - 02:49 AM

WOW!!

I have to say that UCONN Is a bit better in the appointments then U of M. I did all my testing in one building, then moved on to the next building for the rest. It was very easy. Long day but easy! I was even given warm blankets and I had this done in the summer! Maybe you need to move to CT LOL.

Please let me know when you get the results. Oh and I need a nap now, you wore me out. I could feel my legs getting more tired as I was reading LOL.
Love ya,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#11 Elehos

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Posted 21 December 2006 - 09:41 AM

Hi Vee,

I think they took your crack about "if I'm around" in 10 years too literally and condensed it all into one day just in case. Thanks for the warning about all the tests and studies being done, and hope that you've recovered in the meantime!


"Warm and Happy" back at ya!,
Elehos

#12 americanmike

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Posted 21 December 2006 - 07:47 PM

Hi Vee--
Your post cracked me up! You have a great sense of humor...very funny.

I've been like a mad man reading about rituxan for the past 2 weeks. It's really an interesting "drug". It's not a chemical, but a genetically engineered anti-body that targets B cells. It's very specific, doesn't effect much else in your body, and really hones in on B cells... and kills them.

It is an incredible therapy for almost all autoimmune diseases from Ra to lupus to vasculitis, and even myositis. It works really well, and many people experience remission... but it usually wears off, b cells repopulate, and the disease relapses.

Many patients have taken "maintainance doses of Rituxan every 6 months to treat lymphoma. " It was "well tolerated" over the course of the treatments some as much as 5 years. As for autoimmune disease and multiple treatments time will tell. Many patients with RA are "retreating" when symptoms return.

Now... what about scleroderma and rituxan? From what I can tell very little study has been done. Boston University was recruiting for a trial in late 2004... haven't heard or found anything on results.

recent studies have found b cell abnormalities in scleroderma skin, and since Rituxan has been effective in 20 other autoimmune diseases... I think trials are needed!!!

12k per infusion? Yikes... It better work well!!!

Happy Holidays... wishing you and your families much love

Michael in Florida