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well i havent been on here in awhile but dr f freaked out when he saw how much i progressed when he saw me a few weeks ago! so i got a picc line in my chest and i just finished my first week of ivs…..im on it for 8 weeks… one week on 2 weeks of and so on! i hope this works! no improvements the first week!
Good luck with the I.V.'s. I really hope that it works as well. The I.V.s help me more than anything. I hope you start to see some improvements soon.
Hey Sara, I was just thinking about you the other day and wondering how you were doing. I try to read often but I haven't posted in awhile, but you are a few months ahead of me & not that far from me geographically, so you've been on my mind.
I've heard really good things about the clindy IV's. Plus, it was 40 days of oral clindy prescribed by my dentist for an abscessed tooth that so amazingly reduced my fatigue, tendon/ligament stiffness, pain, etc. that we went looking for answers as to why a simple infection or antibiotic would make someone w/SD feel better. 🙂 Thank God for that lousy tooth & the clindy or I would have never found AP or RB. Anyway, that's why I'm so optimistic about clindy. I really, really hope & pray that it will work well for you, too.
Good luck, Sara, with the IVs. Fingers crossed that this more aggressive approach will stop the progression and then start reversing.
Take care…..kim
Hi Sara,
I did my first one week round of IV Clindy in November, the first 3/4 months were amazing. I noticed within the first two weeks that I did was not as wheezing and was able to do more activity without loss of air and I also seemed to have a bit more energy.
Well in the last 2 months, I have noticed that I am having breathing stress upon exertion, that icky, annoying wheeze is back. It's crazy because the first 2/3 weeks I was able to beep bop up my stairs at work without resting on the landing, now I have to rest when I come in the door and again on the landing and once I finally get into my office I am so out of breath I scare myself.
I am going back again to see Dr. S. in June, which is 7 months since my first IV's. I am thinking that I may need to have IV's every 3/4 months instead of every 6. I will visit with him about when I get there.
I am on minocylcine 100 mg twice a day but definately think the IV's are a must for my continued progress. Also, thinking about having the lyme test done but need to wait until my life calms a little bit and I have extra money.
Our son is graduating from vocational school this Saturday in Welding and our youngest son is preparing to go to a big campus next fall and I am supposed to be moving to AZ to live with my husband in the fall, finally -so, am trying like heck to budget but that's so hard;)
Good luck with your IV treatments.
Take care………..Alli
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!Wow, $600 a week, that's crazy! I am fortunate as I am covered through my work insurance and use my husband's as secondary coverage – however I am still trying to pay off a $6000.00 bill at Mayo from 3 years ago. My insurance wouldn't cover at the time because of the preexisting condition. I still think they should have written off the balance, considering the cost and money they did receive from insurance for 2-week long visits – anyone agree;)??
I didn't ever have thickening skin on my arms, it is primarily my fingers and around my lips. My toes don't seem to swell however they have the bluish tint when they get a little chilly. That wouldn't be an issue if it would ever quit snowing over here!!!!!
My rheumy asked me at my last visit if I have ever had any swelling in my upper extremities, she said my skin was very pliable, except for my fingers and a little on my hands. Sometimes I have swelling in my calves, but I think that has a lot to do with sitting and what I eat. I have always been a water drinker (a gallon a day) which I think helps dramatically with swelling.
Alli
Sara,
I've been thinking about you so much lately, and worried that you haven't posted in a while. I'm so happy to hear that you are doing iv clindy–I really attribute the reversal of most of my symptoms to the iv's. I'm so sorry to hear that you are struggling, and that you still don't have much relief but, I'm also very hopeful that things will get better for you. I'm the most impatient person in the world, and all I have to say is that you need to be patient because it does take time. I was really bad by the time I got my iv's, and it took me a good 5 months before I started to notice any major changes. But, now I'm almost completely back to normal, with just slight contractures in my hands, and a little tightness around my mouth. I know it's tough but, try to stay as positive as you can. And, please reach out whenever you need to.
You're in my thoughts and prayers.
Maria
how often maria were you getting the iv's in that 5 month period? im on it for a whole week every 2 weeks…im starting my second round tomorrow! ive been told twice by others that my smile is getting bigger, now if just my arms would loosen!
Hi there!
I have always been on the 1200mg for 5 days straight, every 4th week. I'm happy to hear that people are noticing your smile getting bigger–that's progress:D The hands take more time but, my arms responded pretty quickly. How are you feeling? Sometimes it's hard to see the little improvements–I know I still think that I look worse than I do because I'm so hard on myself. My friends and family are constantly telling me I look better and better, and when people who don't know me find out what I have, they are shocked because I look completely normal to them. I'm glad that Dr. F has you on an aggressive iv protocol, and I hope that you continue to see improvements. I know it's hard to be patient but, it's going to take time, and it's SO worth the wait! Please reach out to me if you need to talk–I'm here to help you get through this in any way I can.
Sending you lots of love and support!!
Maria
Good luck, Sara.
I've said this many times, but I think sauna therapy ought to be mandatory for anyone with SD. You've got to do everything you can to improve your circulation.
Take care…..kim
can i still do sauna with my picc line in? i thought with a wound you cant? ive stopped because of it!
Sorry, Sara, I forgot about your picc line. Check with your doctor, but I wouldn't be comfortable with it. 😕
Good luck……kim
My husband had a central line (groshong). His LLMD said he could do sauna but I too never felt comfortable with the idea. It's funny the mishmash of information you get sometimes. Doctor says one thingabout dressing or no dressing and then each nurse would have their own idea of how to do things.
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