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docmartenmom

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About docmartenmom

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  1. Hi Everyone, sorry I haven't responded sooner - thanks for all of your input - I am taking it to heart. Margaret, I am so sorry Gareth went through that - how terrifying AND heartbreaking - thank goodness the stopping of that medicine made his symptoms stop too. It's Sunday afternoon and I haven't started the Lyrica yet, but since my all over pain doesn't seem to be subsiding with the meds I am already on, I am going to try 75mg at bedtime. Here's hoping I can make it into work tomorrow - the possible side effects are pretty alarming. I'm relieved that some of you haven taken Lyrica without incident. Thanks again and (((hugs))) Lori
  2. Hi Everyone, I saw my rheumatologist doctor at the Hospital for Special Surgery yesterday and she is adding Lyrica to my roster of meds. As of now, I take 400 mg/Hydroxychloroquine, 80 mg/Nexium, 15mg/Meloxicam, weekly B-12 injections and weekly Vitamin D 50,000 units. diagnosis so far is Barrett's Esophagus, pernicious anemia, atrophic gastritis, Rheumatoid, connective tissue disease, Raynaud's, Sjogren's, fibromyalgia. Still trying to figure out if I have systemic sclerosis or SLE (lupus). I have heard mixed reviews about Lyrica, but my doctor is advising me to take it, starting with 75mg/day and working up to 150mg/day by next week. Have any of you taken Lyrica and has it helped? Thanks and be well, Lori
  3. Aww good luck Peggy! I have Barrett's and my symptoms are the same as yours - I know what you're going through. (((hugs))) and please keep us posted ~ Lori
  4. Thanks Shelley - great advice! I will definitely make a kit LOL Luckily for me my doctor knows I have an hour and a half drive to get to her (I am in Upstate NY) so she is forgiving. My goal is to get to her tomorrow - just waiting for the office to call back. When I go, I've decided I will take the train and subways in rather than drive. Too time consuming! Lori P.S. Thanks for the flowers :)
  5. Hi Everyone, I had to cancel my appointment with my rheumatologist doctor in Manhattan this morning, and it is important I see her :( For the past couple of weeks, I have been dealing with tendonitis in both elbows, but my left elbow is far worse. I cannot rest it against anything it's so sensitive. This morning, my stomach was (and is) too upset to leave home just yet, so here I sit, needing to see my doctor. Yikes. I was given an prescription for Lyrica but have not started taking it yet - mainly because I am on so many meds at this point. I worry that adding another one, particularly THAT one, could throw me more off balance. So far I am on 80 mgs/Nexium daily for Barrett's Esophagus, 1500 mgs/Nabumetone for inflammation, 400 mgs/Plaquenil. I also take a slew of vitamins, supplements, weekly B-12 shots for pernicious anemia and weekly Vitamin D. Any advice? I'm thinking Lyrica may help this all over pain, but are any of you on all of these meds particularly? Thanks ~ Lori
  6. Thanks for sharing & for the added info, best of luck to you! Lori
  7. Thanks girls, I appreciate your warmth :)
  8. Hi Everyone, Last December, I woke up and discovered my left middle finger was misshapen and the top knuckle bent down. My local rheumatologist doctor diagnosed it as Swan Neck Finger - said the other ones may do the same over time. Yesterday I noticed my right index finger is bent and looks as if the top and bottom are veering off in opposite directions. Also troubling is my thumbnail on my right hand - there is a perfectly vertical, raised ridge line going the entire length of the fingernail. I went for my weekly B-12 shot this morning and my primary doctor said it looks like the ridge has a darkened edge and could mean vitamin deficiency. That makes sense because I am deficient in B-12 and Vitamin D. I notice every one of my fingernails looks lined and a couple look like they could be forming a ridge like my thumb nail. Is this another way of systemic sclerosis looming its ugly head at me? My nails have always been brittle, since I was little.
  9. Hi Responders - Thanks for all of your advice & heartfelt compassion - it means ALOT. I have been giving my daughter the gluten-free diet for a month now, without any change. She is still achy, hobbles in the morning due to sore feet and is still presenting with headaches, occasional temper tantrums :( and low grade fever here and there. In the beginning her pediatrician tested her for ankylosing spondylitis and she was diagnosed with that. Further testing from him and her pediatric rheumatologist came up with the ANA speckled pattern - main doctor says it's lupus, her pediatric rheumatologist doctor says she will not "label" her, so I am frustrated but braced and ready for whatever comes. I am just so sad that this is happening to my 11 year old. I know how terrible I feel on any given day and I am 44 - I had good health up until my mid-thirties, so I cannot imagine how she feels as a kid going through this. I have endless hugs and understanding for her. You all rock so much - I will keep you posted on my little one's progress. Fingers crossed for a remission, and a looong one at that. ~ Lori
  10. Thank you all, and I really hope we have more pain free days ahead, all of us. Enjoy the weekend :) Lori
  11. Hi Everyone! I've now been on the Hydroxychloroquine for 3 months and I can tell you the exact day it started working - I woke up and felt an energy I hadn't had since 2008 and I literally bounded out of bed and started dancing LOL I went for my base line visual field test and all is good, so I am hoping this will help make life more bearable. Right now, I take 400mg/hydroxychloroquine daily, Lanzoprazole, 1,500 mg/Nabumetone daily, 1,000 units B12 weekly, 50,000 units Vitamin D weekly and then some. I was supposed to start Lyrica (750 mg) a month ago but the thought of yet another pill and the side effects have me a little nervous. _ Lori
  12. Glad to hear the ice is helping Karen - feel better! I just went to my doctor this morning for my weekly B12 shot and was diagnosed with tendonitis in my left elbow. I am right handed, so luckily I use that arm less, but I cannot sleep at night unless my arm is not resting on anything. I've had it for about two weeks and finally mentioned it to my doctor. The skin on that elbow is darker and rougher than the skin on my right elbow. I haven't had outward signs of sclero yet, and am wondering if it is the beginning? I will check with my rheumatologist doctor in NYC when I see her next. My primary dr recommends I go to the hospital for a shot of cortisone but I declined. I am sick of shots. Lori
  13. Awww I feel so much better with your post Shelley, and you are absolutely right! I will try my best and carry on with humor - we are a very silly bunch over here so it shouldn't be too hard LOL SusieQ I will definitely keep you posted - thanks for the hugs, it means a lot! Lori
  14. Hi Marsha, From what I know, titers are the number of dilutions the test takes before there is no trace left of what the test is for. I think 1:180 is borderline positive for titer testing, but I cannot be certain. The ANA pattern testing is to try and narrow down what possible autoimmune disease it is for. For instance, ANA speckled pattern can be indicative of either Scleroderma, SLE, MCTD or Sjogren's. Good luck - Lori
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