Scleroderma & Raynaud's

[Legna]

I was diagnosed with severe Raynauds several years ago and was diagnosed with schleroderma about 2 years ago. The scleroderma hit my internal organs more than it did my skin. My rheumatologist recommened that I set up an appt with Dr. Robert Simms at the Boston Medical Center as his team specializes in only scleroderma. He spends several hours with you on your first visit and for every visit thereafter he spends as much time with you as you need re: discussing options, or any questions you may have. Again, this is all his team specializes in so you know you are getting the best as this is his number one focus. He works with all of your doctors making sure every complaint, ailment, etc. is being recognized. The scleroderma hit my upper and lower GI as well as my lungs. I have been on chemo for almost two years with great results. There are several types of chemo treatment and the one I went on had no real side-affects to complain about and it also stopped the progression of the disease and even reversed some of the damage. I live a normal life - with the exception of all the meds I take - but I can't complain as I was able to get back to my normal daily activities again.

[SheriFrost]

Oh that is the best info I've gotten yet. I feel like I'm out here blwoing in the wind!

[Hidden]

Sounds like great news! My daughter has scleroderma and is also doing well on methotrexate. But I am still curious - What are the meds that are working so well for you?

[Legna in reply to Hidden]

I am taking cellcept for the overall disease and amitiza to help with my digestion/lower GI. I am happy to hear that your daughter is doing well on the methotrexate. I have been working with a wonderful team for the past couple of years and they have been great!

[AshtonRains in reply to Legna]

Sorry to but in - but is Cellcept the same as Cyclophosphamide? Your recovery is an inspiration to anyobody with Scleroderma or Raynauds! Keep up the good work

[Legna in reply to AshtonRains]

Legna

0 minutes ago

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Hi Ashton, No need to be sorry. :O) Cellcept is the same as Mycophenolate Mofetil. Cellcept in the brand name and Mycophenolate is the generic brand. Cellcept is not the same as Cyclophosphamide. Keep your chin up and spirits high - the road may be a treachorous one, but in the end - there is light at the end of the tunnel. Took me awhile to believe that - trust me. I would always say - think of it has a staircase and you want to get to the top; however, the only way to the top is to climb each stair one at a time. Hope this helps!

[mirandamae1971]

I was diagnosed 3 1/2 yrs ago, At first they put me on methotrexate and it seemed to work ok, however the side effects were not good and it seemed like I always had some sort of infection due to my immune system being so comprimised. They Took me off after finding out that the methotexate can actually cause greater harm to the lungs. Then they put me on the cellcept. I had no luck with it and decided to take myself off of it. Partly because I so badly resented it because I felt so strapped down with taking so many pills every day. And Partly because after several months I did not see a difference. My question to you Legna is how long were you on the cellcept before you noticed a difference. I wonder if, out of frustration with the scleroderma, I might not have given it long enough to see a difference. The damage in my lungs have continued but slowed down, however, I continue to decline in the distance I can walk in 6 minutes. I wonder if it is due to lack of activity therefore creating lower and lower stanima or if its actually still lung function declining in spite of the lung funtion test results..... I live in an area that the Drs are small town drs. and really dont have the experience with this disease, an already frustrating disease is creating much more for the lack of understanding by my local drs.

[Legna in reply to mirandamae1971]

Hi Mirandamae, I understand and can appreciate your frustration - hence why I went to see a specialist in Boston versus my hometown as my rheumatologist was not completely familiar with the disease. I couldn't even make my bed without having to take several breaks because I was out of breath. I was on cellcept for about 6 to 8 months before I felt progress. I started off with my lung capacity being 52% and now my lung capacity is around 64% - and so I responded well to the cellcept. Over this past year or so my lung capacity has remained at 64% and I know your body adjusts to compensate for lack of lung function - but you do have to try to stay as active as you can. The more you do, the stronger your lungs and heart, etc. become and therefore the easier it feels to breathe during activity - well as long as your not trying to train for a marathon as much as it may feel like you are. Does that make sense? Sometimes I talk too much. One thing that changed re: health for the negative is I have severe allergies and with this disease I now have asthma and perhaps you should look into that as that may be hindering any advancement in your activity level. I take a ton of pills every day and there are plenty of days I grow tired and frustrated - but it is those days that I don't take my meds or I feel angry and frustrated that I don't have the strength or stamina - your mind is a powerful tool and as hard as it may seem, try to stay positive and continue to move and push yourself and push your doctors. See if they can recommend anyone else or look in surrounding towns/cities to see if there are specialists outside of your home town. As much as an inconvenience it is, it can be worth it as well. We drive two hours to see my specialist - but that time spent was well worth it because I was meeting with someone who is educated re: this disease and scleroderma is also what he specializes in and nothing else. Hope this helped.......

[mirandamae1971 in reply to Legna]

Thank you for the encouragment, Its always helpful. I am going to try to become more active, I really want to increase my muscle health too. I have traveled to chicago which is about 6 hours from me as well as madison- 3-4 hrs away. Seems they have no more knowledge of what to do then the drs here. Maybe its more difficult since I am not seeing them on a reg basis. Dr. Varga in Chicago is the one who put me on the cellcept, but i was only able to go see him once as my income is so limited. Sometimes I think about moving, But all my kids are here and cant see leaving them. Fortunatly I am holding right now, But it do think its time to try to improve my strength and stamina. This seems hard to do with absolutly NO ambition. Just thinking about it tires me out...lol.

[Legna in reply to mirandamae1971]

I understand. You could always talk with your specialist in Chicago and see if you can do your PFT's in your hometown with your rheumatologist there and have your results sent over to the doctor in Chicago - same for your CAT scans or any other testing and then only meet with your dr. in Chicago every 6 months to discuss progress or there lack of and then discuss next steps..... just a thought. Also - regarding ambition/motivation, you can look and see if your community offers any kind of therapy groups for those that have been diagnosed with schleroderma that you could join which might help as well...

[mirandamae1971 in reply to Legna]

Yes we did talk about that... He was willing but my finances dont even allow for me to go see him once a year. and He wasnt willing to do anything different really. But he made some suggestions on what other types of testing I should have done on a reg basis to my rhuemy here, and so that helped. I have looked in my area and a 60 mile radius for support groups of scleroderma.... I live in a very small town, "up north" area.... Thanks for the sujestions. I am happy to have found this group online.

[harley12]

hey my nan died of scleroderma because they said there was no cure is there i dont really know about it i was to scared to look it up thanks

[Legna in reply to harley12]

Harley,

Your nana may have died due to the disease perhaps because they diagnosed her too late and/or never treated her....It is my understanding that the disease burns itself out; however, with that being said, if damage had been done in the interum and had not been treated, the chances of death would be more prominant. For instance, the disease hit my internal organs and if I did not get treatment, I would of ended up on the waiting list for a lung transplant and if no match was found in time, I too would have died. The disease is a complicated one and there seems to be alot of doctors (Rheumatologists) who are NOT educated re: this disease - and quite frankly they should then go get educated - but I digress.....Anyway, with this disease you have to get treatment as soon as you can otherwise you do end up facing complications and sometimes death.....