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About RobinAustin

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    Senior Bronze Member

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  • Location
    Austin, TX
  1. My rheumatologist was very upbeat about the results of the biopsy/lavage BUT, she did admit she needs to do some research before committing to any new treatment so she upped my cellcept to twice daily (1000 mg total) and I made a follow up appt for April 28th. She also gave me a referral to Dr. Maureen Mayes and if any of you are from Texas you will be familiar with her name. She is THE scleroderma specialist in this area ... hopefully, if my rheumatologist doesn't know where to go next, Dr. Mayes may ... I'll keep everyone posted ... Thanks again for all the well wishes ... it really helped when I was overwhelmed last week. XOXO Robin
  2. Thank you SO much for all your kind words ... my appointment went well. The percentage of inflammatory cells has dropped from 30% to 11% which apparently is good and bad. The good news is I am not at the point where I need a transplant :o) The bad is, I think, that with such a low percentage of inflammatory cells, it reduces the efficacy of medications like cytoxin and cellcept? My pulmonologist wasn't 100% clear on what everything means so I have another appt today at 4 with my rheumatologist who will hopefully be able to explain it all a bit better. My pulmonologist is great, he's just not a scleroderma expert so he admitted he didn't want to say anything that might be completely wrong so was deferring to my rheumatologist... blah. I guess I'll know more later today :o)
  3. Hey everyone! I haven't posted in a LONG time. I think I was in a bit of denial and reading about how bad it has gotten for some of you just scared me. I have now completed a 6 mos course of cytoxan along with a huge dosage of prednisone along with other various meds for GERD, blah, blah .... I still managed to lose 36% of my lung function despite all the proactive treatments, so ... I find out this afternoon whether or not I will be doing another round of stronger chemo or going on the lung transplant list. I had a bronchoscopy/lavage/biopsy last Wednesday. To say that I am no longer in denial is an understatement. I am scared to death and hope I am strong enough to handle whatever I hear this afternoon. I knew that things weren't going the way my doctors had hoped they would when my arms starting itching and burning again only a few months after my final cytoxan treatment. I was having more and more days where it felt like I was breathing through a wet rag and the pressure in my chest was becoming constant but yet I still had hope going in for the follow up PFT a few weeks ago. I had hoped the symptoms were from the meds (and subsequent weight gain) and not the scleroderma again. My pulmonologist said 20-25% would have been significant ... 36% was not good. Wish me luck... Robin
  4. I saw that House episode as well ... has anyone noticed that alot of those "Mystery Diagnosis" and "Real Stories of the ER" kind of shows are having a run on patients with scleroderma?? I love watching those shows and I SWEAR every third one has a patient with some tye of scleroderma or at least an autoimmune disorder of some sort ...
  5. Anyone have issues with dry sinus cavities? For about two weeks I've had horrible sinus headaches off and on and they just feel like they're SO dry they're about to crack. I keep expecting nosebleeds but none yet. Last night the pain was so bad I started to feel sick to my stomach. Also, a small hemorrhage in my eye has appeared at the same time, just below my left iris. I read someone's post about a hemorrhage in their eye and they have Sjogren's? I haven't been diagnosed with that...yet. I do have diffuse scleroderma with interstitial lung disease though and THAT is running rampant right now.
  6. My hands are puffy and tight but the real tightening is in my forearms from just above the wrists to just below the elbows. The skin is tough as leather and my forearms are visibly deformed from the restriction. It's like a really wide rubber band around the forearms. Robin
  7. Jefa is right sweetie ... you are your own best/only advocate in SOOOO many ways. Not just fighting for the right meds but for the proper care from doctors, etc ... I think it's part of what makes "sick" people stronger than your average bear. We have to fight for ourselves all the time and until you're ill and HAVE to be your own advocate, you have no idea just how difficult that can really be. I try to look at it as a growth experience. The more I advocate for myself, the stronger I become as a person so ... when I am no longer "ill" I will have had the benefit of an experience that makes me more comapssionate and a better person all around? Somewhere in there is a logic I can live with :) Good luck with the meds and keep fighting ... you know which meds work best for you so don't give up. Call your doctors and enlist their help with fighting the insurance people ... maybe someone on this list is from the same state and has fought with your insurance company already and knows some inside info? Robin
  8. I'd like to throw in a little Margaritaville at the edge of town ... Tiki huts, good looking bartenders with white sand beaches all around. At the end of the night there is a courtesy golf cart to return you to your home :o ) Oh and in Sclerodermia the sun is filtered so you don't have to worry about UVA/B rays and all that stuff... you just enoy the way the sun feels on your warm skin. XO
  9. Looks like poor veins just go hand in hand with the slceroderma ... stinks. I am only supposed to be on the cytoxin for 6 months so I'm not sure if a port would be necessary at this point. If for some reason, the 6 mos gets extended or I have to do another series after the intial is done, then I'll ask about getting a port. My hope is that after the 6 mos is up, I will be able to go back to not having to be stuck every other week :) Thanks everyone for responding to my post ... it feels so much better knowing that some of you know EXACTLY what I'm dealing with. I was up this morning at 5:30 ... wide awake. Normally that wouldn't be out of the ordinary but I didn't crawl INTO bed until just after midnight ... the amount of time I'm sleeping seems to be getting shorter :( Not sure if that's the prednisone or just being busy this time of year? I have a feeling it's the prednisone ...
  10. Hey Sheryl! I'll tske that advice to heart ... get as much done as I can :o) I didn't have any real energy problems prior to the treatments so I hope I just go back to normal at some point. The cytoxin and prednisone are for lung involvement. My pulmonologist found some spots on my lungs after a CT scan and then some restrictive damage with the PFT. Nothing major so they're hoping to stop the progression in its tracks with this 6 mos regime of the drugs. I'm hoping for a little reflief from the skin invikvement too. The RN at the infusion said several of the doctors patients have noticed skin softening with the IV treatments as an added bonus :o) Thanks again for the kind words or wisdom... Robin
  11. Thanks Shelley! I appreciate the reply. I've been struggling with changing my eating habits for a few months now so this is the perfect excuse to kick it in to high gear. I've been looking at eating more organic and high fiber foods to help fill me up so I won't be as prone to snacking and munching on the easy access foods. My partner and I both have about 15 lbs we'd like to lose anyways so this is a great reason to seriously re-examine our eating habits :o) I'll keep you posted as to how we do ... I went to the link you sent me ... the pneumonia thing has me a little worried but, since there's not much I can do about it, I'll just be more aware of it. My rheumatologist added some other drug to the cytoxin that she said would "protect my kidneys" plus I take Norvasc 5mg/day which is supposed to help as well. Any idea what the symptoms of renal failure are? I didn't see any posted ... Thanks again Shelley.. Robin
  12. The most obvious parts of my scleroderma only started about a year ago ... the Raynaud's was diagnosed about 7 years ago and in hindsight, I also think I was having a flare up on my scalp as well at the time. I had some dry, itchy patches on the skin above my ears and had some hair loss as well. My general practitioner at the time told me to use Denorexx or something thinking it was a dandruff/scalp issue. I started using organic shampoo unstead because I hated the way the dandruff shampoo smelled. Either the organic shampoo worked or the flare up just went away on it's own. Fast forward 6 years and despite a few hiccups with the Raynaud's, nothing major happened in my life until 2 years ago... I went through a horrible break up, had to find a new home, a new job and new friends. It took about a year to get all that under control and then "BOOM" ... the skin in my hands and arms started going ballistic on me. 3 mos later I was diagnosed with diffuse scleroderma. ALSO, (and I've been told this CAN'T have anything to do with it but I still wonder) last summer right before the "ballistic" phase, I started taking Chantix to quit smoking. It was a miracle drug! I had very little trouble tapering off, little by little, until I was going few days at a time without smoking a single cigarette. Then school started and I stopped taking the medication and I was right back up to where I was before taking the medication two weeks into school :o( I knew something was wrong with my hands and arms right about the same time...could just be coincidental but you just never know what OTHER side effects some of the newer drugs may have until YEARS into their use. For all I know the Chantix may have triggered something OR it could just very well be that having the most stressful year of my life prior to that, finally caught up with me ... rationally I would say it was the stress ...
  13. Hey everyone! I'm on week two of 40mg of prednisone in the am and another 20mg at lunch ... WIRED!! Is this normal? I swear I've never been more productive in my life! I don't have any problems sleeping either which I was worried would go hand in hand with the hyperactivity. I'm not sleeping as much mind you but still getting at least a solid 6 hours ... my partner doesn't know what to do with me! I'm basically a sedentary being and this up and down, into stuff, doing odd jobs and finishing them has her flumoxed!! Is this going to last the entire 6 mos? I have noticed an increase in appetite unfortunately. Any tricks to quelling the steroid appetite? Did I mention already that I had my first IV Cytoxin on Friday? 7 hours of sitting with an immobile arm (they couldn't get a cath into my vein so I was stuck with a needle the whole time). I couldn't play music on my PSP :o ( I was sleepy Saturday but other than that had no side effects. I feel VERY lucky ... Anyone else have a really horrible time with needles? I was never afraid of them before but am developing a real hatred/fear of being stuck. They can never get a good one so have to go elsewhere and then they move it around a bit and .. argh. It hurts!!! Brings tears to my eyes almost every time... XO Robin
  14. Chats? You mean real time chats? What time on Wed & Sun? I am in CST time (Texas) ....
  15. Hey Razz! Welcome! ... I'm kinda new too! I love your upbeat attitude :o) I don't get to post much either but I almost always find a day or two to check out the new posts. Everyone here has been incredibly welcoming and forthcoming with information and suggestions when needed. I look forward to hearing about your experiences .. Robin
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