i started iv's

[mschmidt]

Sara,

I know how frustrated you are, believe me when I say that.  However, you're just 3 weeks into the iv's, and that is SO early on.  It honestly took me almost 5 months to really notice things reversing.  My hands and arms were SO tight, and I felt TERRIBLE all over my body.  Then, I woke up one day, when I was at my wit's end, ready to give up, had called Dr. F and caved into painkillers because I wanted to die…I filled the prescription, took 1 pill, and never had to take another one. 

Keep doing what you're doing, and try to stay as positive as you can because you WILL get through this.  I had some very dark days in the beginning, and I reached out to many people here to help get me through them.  You're in my thoughts and prayers, and please reach out if you need to.

Maria

[jlane1111]

[user=2094]saralester[/user] wrote:

hi ali! i know wht you mean on budget…its costing me 600 a week for the iv's to do at home myself! sheeesh!
i do feel like i have more energy and not so foggy but i really want my skin to loosen on my arms and hands! my dr called yesterday and told me i can go up to 1200 mg of the clindy if i wanted to and i think im going to i want this to work faster! im so impatient!
i will post my progress when i have some LOL! im going to stay on the ivs till im all better! im tired of being sick! my kids need there mom!
just to put my lil input in…i know its expensive but take care of your self now…the worse it gets the hard it is to reverse! i kick myself in the butt for not getting on this sooner! if you dont have your health you have nothing!
blessings friend!

Hi Sara

My husband was diagnosed last year with scleroderma and began the 200 mg of minocin and recently added “z.” He's still anemic, kinda “foggy” and doens't have alot of energy. We just added B12 shots and will begin Clindy iv's next month.  The initial dosage will be the 300 (2x)-600 (2x)-900 (1x) for the week.  He has significant fibrosis on the neck and facial tightness as well as on legs and arms plus Raynauds. Please let me know how you are feeling on the IV's.  My husband needs to see progress. 

Thanks

Jo    

[saralester]

trust me i wish i could say its a fast prosess but its not. im on my 3rd week of ivs and have no progress as far as skin. im on high iron so my energy and groggyness is gone but my skin has not loosened yet. i have it really bad on my arms to where i cant fully extend them and my hands are all contracted. and i cant bend well or pick up anything off the floor. the only thing that keeps me focused and confident is the fact i talk to other patients of my dr and there all getting better over a years time. my dr told me to give it 6months on ivs before id see any change. thiere are no other options so this is whats working but just have to be patient….trust me i have days where ive just had it! i hurt all over , cant shower or dress myself! anyway ivs are the way to go, i have a central line in my chest so i get my iv meds delivered to the house and hook up myself! anyway im so sorry to hear of your husband but i know how he feels! keep your chin up and stay positive for him! glad to. here hes getting on ivs but its a slow progress!

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