janey

Bosentan For The Treatment Of Scleroderma

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Bosentan for the treatment of scleroderma. Two randomized trials have demonstrated that bosentan is effective in idiopathic pulmonary arterial hypertension and in pulmonary arterial hypertension related to connective tissue diseases, particularly scleroderma. Future Rheumatology. 2006 Oct; Vol. 1(5):549-562.

These items are posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I want to add a side to this study. As I have mentioned in some previous postings, I started on Bosentan about 2 months ago (my how time flies mellow.gif ). Within the first week of taking it, I found a support site on the Internet that was set up by Actelion Pharmaceuticals. The program is called Tracleer SureSteps.

 

The day after joining via the website, I received a call from a registered nurse. We talked about 20 minutes. She gathered a short history and then we discussed Tracleer (Bosentan), its side effects and what I needed to watch out for. She also answered a couple of questions I had about PAH. A month later she called me again to remind me that I needed to get a bloodtest for my liver enzymes, which I had already done, but I did appreciate the call. She again asked if I had any questions and offered her assistance whenever I needed. I have her direct line.

It's good to know that I have some medical support out there right at my fingers tips, especially since I'm not able to reach my pulmonary doctor within a timely manner. For those of you on Tracleer (Bosentan), if you haven't joined SureSteps, please consider it. It's free!


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey,

 

That's great to know. Thanks for passing the info along. How are you doing on it? Any side effect? Are you noticing any improvement? What altitude are you at? Is that adversely affecting you? Sorry to bombard you with these questions. I'm just really hoping you get the right tx in place and get this arrested and even reversed!!!

 

xoxo emmie

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Emmie,

THANKS for your encouragement! Yes, I do seem to be feeling better. I'm going out for a walk here in a couple of hours once it warms up some, so I'll see. I haven't walked for about 10 days because it's been too cold, so this will be a good test. I also go in for an ECO on Wed and I'll do a 6-minute walk to see if there is any improvement from 2 months ago. Next week I have a PFT and doctor's appt, so we'll see.

 

I live a mile high and yes, it does affect me because whenever we travel to sea level, I breathe better. We've talked about moving, but... we love our life here and many, many other reasons keep us here. No side effects that I know of. I did get my bloodwork done Thursday, but haven't received the results yet.

 

I also haven't seen any side effects from coming off the MTX. I know that probably takes a while, but so far, so good. Right now, I'm still on the high from the IVIg treatments a couple of weeks ago. I really hope you get approval. Have you been tracking your CPK? That's how I got approval. I was able to show that my CPK skyrocketed after 3 months without an IVIg treatment and then dropped back to normal after one treatment. Let me know what happens. <br>


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey,

 

I'm really glad to hear you are feeling some improvement. I hope your walk felt good and that the tests go well. Let us know! I know what you mean about not wanting to move...no matter where we are, when we have a life in place that we are happy with (in spite of our "stuff"), it's good when we are able to stay there.

 

I'm glad you're off the mtx. I wsn't aware that it can take a while for side effects from it to show themselves. Try wearing a clove of garlic around your neck! That IVIg stuff is great, isn't it. It's worth the sit for the infusion.

 

I'm not sure what CPK is. Is that a measure of inflamation for myositis? I was getting the IVIg for the Hashimoto's encephalopathy. The kicker is my insurance paid for 5 infusions and is now refusing to pay for 2 I had after that saying they shouldn't have paid for those 5. That it was a mistake. Well, I had those 2 additional infusions based upon the fact that they had covered 5 previous ones. Our appeal is in, so we are waiting on their answer at this point.

 

However, I have been gradually experiencing increasing weakness in my upper arms and thighs. this past week my lower legs were also affected. I told my neuro about it saying I wasn't sure if I should tell him or my rheumatologist; he said maybe both of them. From time to time, they also hurt. Some days it is worse than others. It is always worse if I am more tired. Can myositis develop gradually?

 

I've also been having some more shortness of breath when trying to do stuff around the house or when I'm more tired. I noticed on my eco from 2 years ago something was 60%; the one a couple of months ago was 40%. I go for the walk and a pft and see my pulmonologist Wed. so I'll tell him all my troubles too. Maybe it's all just a big ball of pfooey!!

We are a fun bunch!

 

Take care and do post on your tests and progress.

 

xoxo emmie

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