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Patty1

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About Patty1

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    Senior Bronze Member

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    Massachusetts
  1. Raynauds & Nifedipine Use

    Hi Amanda and Lil Dee, Amanda had a very good suggestion, which I second...I have been in counseling for all of the last several years, dealing with this disease, and other factors, such as having to give up working and a good chunk of what I used to be able to do for relaxation and fun is a mourning process, and dealing with it is crucial. Not to mention your self esteem which takes a beating; it is a constant struggle to keep it "in the day" especially this time of the year when forced to stay indoors allmost all the time. It helps a lot to be able to talk to someone who can give you coping skills, not to mention a place to dump your worries without upsetting your family. ( I hate to burden my family too much with the fears and worry that plague me) It has kept me sane!! Doesn't mean you are nuts, just that you need help every now and then with the inevitable emotions that come with having a disease such as this.....I can't say enough about it... Patty.
  2. Raynauds & Nifedipine Use

    Hi Lil Dee, I too like many others have been plagued by Raynauds for years, even before I was diagnosed with Limited Scleroderma. I suffered attacks, but back then, it was in my knees and feet of all places, but I just chalked it up to bad circulation due to smoking. Never gave it any thought. But then when my hands started to go numb and change colors, and I started to develop spots on my left index finger, and my right middle finger that looked like old blood blisters did I get concerned and went in for a visit to my primary care doctor. He knew what it was right away, and sent me to a Rheumatologist. I was very lucky getting a diagnosis so quickly compared to many here who had to wait years, and suffer through all kinds of tests and disappointing doctor visits. But the long and short of this story is I have Raynauds, pretty severe, all of my fingers turn purple among other colors. I have had ulcers, cuts that won't heal, etc. I too have low blood pressure, but, still, I am on several medications for Raynauds, including Norvasc (amlodipine) Revatio (sildenafil) doxazosin (bp medication) Lisinopril, and Atorvastatin (believe it or not, it is thought to help Raynauds) and asprin. (81 mg) My Rheumatologist has suggested meds like prozac, but I really don't want to go on anti-depressants, and I think I am on enough meds for Raynauds as it is! I have to monitor my BP regularly. My doctor tells me as long as it doesn't dip below the low to mid 90's/50's I should be okay to take the meds. It does dip sometimes, and I have to back off of the Revatio for a dose or two.... I also periodically have infusions of Alprostadil ( prostaglandin) which require 72 hours-3 days in the hospital. It kind of jump starts all of the other medications and helps with the severity of the attacks. Fortunately I have managed to keep all ten fingers and toes for the last 6 years, but any help is worth it. I don't need to tell you how painful and uncomfortable it is. What helps with the low blood pressure is eating several small meals through out the day, I am not talking 3 course meals, but something like a bowl of cereal, or a soft pretzel ( I love them!) or a bowl of soup; just something small which does help to keep my blood pressure up. With all of the meds I am on, I have to. So there are a few suggestions you can pass along to your doctor, or not, whichever you are comfortable with. I know so far, all of these meds are keeping my digits intact, still a little scarred but I still have them thank goodness! Stay warm, and keep a positive outlook, that helps too! Best Wishes, Patty
  3. Raynaud's and Surgery

    Thanks Jeanne,I am so looking forward to at least a reduction of the pain..Doc tells me not to expect to be pain free, the best outcome would be if they could cut the pain in half. I will be happy to at least be able to bend when I make the bed, and not grind my teeth to stop from groaning too loud! If the Baer Hugger is good as it sounds, I want one. When they did my neck surgery a few years ago, I vaguely remember them wrapping me up in warm blankets. The operating room was so cold, I started turning blue before they knocked me out. I don't remember getting a Baer Hugger then, but who knows! A Vascular Surgeon is also going to be performing part of the surgery, (which is common for the anterior part) to move all the major blood vessels. I am worried about that part of the surgery, I wonder if that is where I could have a complication of spasms? Patty
  4. Hi Folks, I haven't posted in a while. Been going thru a little bit of a rough spell with health and disability issues. Still waiting for my hearing date with the Admin. Judge. I was also recently diagnosed with Lumbar Spondylolethesis at L5/S1-grade 1-2 (slippage of the vertabrae). MRI showed quite the deformity. After 2 injections, and 2 months of physical therapy, and still no pain relief, I am scheduled for surgery (2) at the end of this month and the beginning of next month. I am scared wittless, needless to say. The surgeon tells me the procedure he is doing, anterior/posterior lumbar interbody fusion, (with decompression and laminectomy) is usually done as one surgery, a lengthy one from what I have read. He has choosen to split the surgery into two separate surgeries, a week appart.The reason he gave me is concern about my severe raynauds. He said something about getting 4 or 5 hours into the surgery and having problems from the raynauds. I was so stunned I froze (LOL, no pun intended!) I couldn't think to ask the obvious questions.I told the doctor I have Raynaud's in my feet and knesss as well, he said I have it all over. Has anyone else had problems with Raynaud's and surgery? What could possibly happen? Any insight would help ALOT. Thanks, Patty
  5. Prostaglandin IV

    Hi Eos, Sorry for the late reply, I missed it, due to being out of town for a few days. I have the Prostglandin IV every year for my Raynaud's. My doctor thinks it could end up being more frequent (like Lizzie) than just once a year so far. All I have to do is say "Uncle" and she sets the wheels in motion. The side effects can be quite nasty as Lizzie mentioned,. I have the higher rate drip, they start it slow for twelve hours to start, and then the bump up the rate..which is supposed to get me out of the hospital after 72 hours, but last year, I had a complication of extremely low blood pressure. 67/38...surprised I still had a pulse! But they ended up stopping the infusion for two days, and my home meds, which include norvasc, revatio, cardua, lisinopril, and aspirin for the Raynaud's. Guess the combination was way too much..(ya think??) So I ended up being in the hospital for six days last year. The plan is this year I have to stop the home meds for two days before coming in for the infusion. Probably within the next two weeks. Side effects for me are severe headache, muscle and joint pain and swelling, and all over body aches. Pain meds do help that. They do subside after a few days after the infusion is complete. But, for me it works, keeps the attacks from being too severe, and I haven't had any ulcers for the last few years. Although last year I got frostbite on one of my bad fingers just by touching a block of frozen ice cubes in my freezer without my gloves on. It only took less than 10 seconds for the frost bite to happen, it was that quick. Needless to say I was in a week later for the infusion. So there are pros and cons to it, it was covered by my insurance thus far. Patty
  6. Disability Question

    Hi Craig, We are in the same boat, so to speak. I applied in February. After reading almost all of the threads here on Disability, I didn't mess around. I went straight to an Attorney that specializes in Disability. To me it is worth it. Especially after reading all of the horror stories, and then the paperwork they ask you to fill out. I am on my "Reconsideration" after being turned down the first time. My attorney told me to expect this, and then to expect to be turned down on the Reconsideration. He said, at least in this state (Massachusetts) they almost always turn you down, all the way through. Then you get to see the Judge. This state "contracts" out to another state agency...Disability Determination Services, who review all of the medical records submitted, plus your questionnaire. When they turned me down this first time, they told me.."While you have had issues with Scleroderma, you can still lift 10 pds, and sometimes 20 pds, AND stand on my feet most of the day" they go on to say, that they realize that my condition prevents me from doing my past job, but does not prevent me from working.........groan. I WORKED FROM HOME!! With wonderful supervisors who understood that I needed to rest quite frequently, was to fatigued to work some days..and forgave my hospitalizations. I had the best job possible for anyone with this disease. Due to my severe Raynaud's, I go out very little in the fall, winter and early spring. It is too painful being in the cold. I can't comprehend trying a daily commute in cool/cold weather. I don't think I would have any feet or fingers left. I also have other issues, like most of us, spinal issues, neck and back with one surgery down, and it looks like another one coming. Then throw in the assortment of scleroderma related issues, reflux, esophageal spasms, motility, etc, arthritis, yada, yada, yada. How they figure we could hold down a full time job without getting fired is beyond me. So I am going to sit tight and wait to see the judge, if what my attorney tells me plays out exactly as he mapped out. Who knows, maybe I will be really surprised and be approved on the "Reconsideration"! Best of Luck to you, and keep us posted on how your process is going. Stay Warm, Patty
  7. Boston rheumatologists

    I can vouch for Dr. Alkasab at UMass Memorial in Worcerter. I have seen him, as well as several other dr.s in the Rhematology Center. They know me well! Just coming back to the forums under a new name. I was layed off in February, and had to give up my work computer. Patty
  8. Hi Karen, Not so much on the fatigue and stiffness but my Rhem. thinks that the combination of the Plaquenil and Methotrexate are slowing down the disease progress. I have to have faith in what they tell me, as the few times I have had to come off of the two, I have felt alot worse :( I also know that at the time of my diagnosis of Limited SSc. my fingers had swollen enough to have my wedding rings sized up two sizes, the swelling had started the previous year, and I just put it down to water retention! HaHa!! But I haven't had to have them resized again yet. The down side to Plaquenil, is I have to have a field vision test done every year, as Plaquenil is suspected to cause problems with periferal(sp?) vision. So far all is well. Stay warm, Patty
  9. Hi Tangie, I heard some people say that Plaquenil helps with the fatigue and overall sense of feeling ill. However, I take it, and I don't achive that benifit from it. Wish I did! Hope you feel better. Patty
  10. Spotty Face

    Hi Catherine, Welcome, you have found a good place to ask questions.l have found everyone here most helpful, and though I don't chime in alot, I check in a few times a week. It has saved my sanity more than once to know I am not alone, or imagining things. I have what I think is the same kind of rash as you describe. I asked my Rhem. about it last month when I saw her, and she says it is Sclero related. I have had it for the last year. It showed up last winter, subsided a little last summer, but is back in full glory! It reminds me of when I was about 16 and had many pimple breakouts. It is around my nose/cheeks, and then extends down around my mouth and chin. It seems to get worse when I am stressed out and tired. My husband says it is "cute" and accentuates my freckles, but I am very self concious about it. I try to keep my face clean without overdoing it, don't want my skin even drier than it is allready. I have tried pimple medications, and hydrocortisone cream, but nothing seems to clear it up. Guess it is just something else to have to put up with! Let us know what your doctor says. Take care, and welcome again! Patty
  11. Kids

    Barefut I feel your pain too! Mine are about the same age as yours, relicmom, 24 and 17, and both still at home.It is pretty much the same deal. I gave up trying to clean their rooms even before I got sick. I used to take a trash bag or bags up to my son's room and bag everything that was on the floor. It didn't bother him a bit! I have tried every threat and punishment allowable by law ;) The only thing that worked was revoking privileges. If they wanted to go to a friends house for a sleep over, or a special trip, the deal was they didn't go anywhere until the room was clean. That only works on my 17 year old daughter now! My 24 year old will soon be the headache of my soon to be daughter-in-law!! I really don't have the energy to stress over their rooms anymore, it's all I can do too to keep the house acceptably clean. I think you are right about us being type A personalities, cause I used to have a black belt in cleaning, (all in one weekend!) now I am satisfied if the windows get washed once a year. I PAY my kids to do it, with 28 windows, sliders and doors to wash, it is worth every penny I pay them. Allowances and chores were part of their growing up. I remember when they were little though, the rooms were sometimes a battle. At times, instead of fighting with them, I would "help" them with the cleaning, alot of it was just pointing out what needed to be put in the toy box, dresser draws that needed to be closed. clothes that needed to go in the hamper, etc.... There is nothing wrong in wanting them to learn the advantages of being organized, its never too soon to start teaching, and believe it or not, it does sink in after a while! I believe my two "kids" are starting to see the light! Hang in there Barefut... Warm wishes Patty
  12. Hi Sam, I had an epidural steroid injection in June for neck/arm pain. I have stenosis in my neck from degenerating discs and bone spurs. I see the surgeon again tomorrow to discuss surgery. My reaction to the shot was awful. Four days after the injection I started having what turned out to be muscle spasms in my upper back/shoulder area near the injection site. The ER doctor said it was most likely caused by the injection. I have not experienced that much pain in a long time. It was bad enough to send me to the ER at 9:00 in the evening. I didn't find out about that possible side effect until after the fact. Needless to say, I won't be doing those shots any more, either. I am sorry you are having such an awful time with the injection, just when you think you may get some relief, the cure ends up being worse than the cause. Hope you are feeling better soon. Patty
  13. Hi Celia, Interesting. I have heard this before, and I have to wonder. For five years I worked at an Abrasives manufacturing plant here in the US. They made grinding wheels. My husband also works for a big company that manufactures/tests materials for similar applications. He calls it dirt, but most of them contain silica. It gets on his clothes no matter how careful he is. Part of my job for the manufacturing plant was going around the factory several times a week, collecting time cards and posting notices from the HR dept. I had to wear safety glasses, but now I wish I had worn a respirator or mask. So with so much exposure to the stuff, I have to wonder. I was diagnosed three years ago with Limited Scleroderma. Take care, Patty
  14. What Is/was Your Job/career?

    Hi Betty, From experience with my Dad, Home Health Aids are NOT bums! They are a truly wonderful group of dedicated people. I allways marveled at how caring and special my Dad's health aids were. They allways went the extra mile. How do you do it? Especially when you loose one? Take Care, and don't sell yourself short, you are very much appreciated! Patty
  15. Nitroglycerin For Raynaud's

    Hi Lizzie, Hope you are feeling ok after the "anitfreeze" treatment. It usually wipes me out for a few days. I wish it were more common practice here in the US, last winter I had to wait for two months for the bed in ICU, and in the meantime, my rhem. put me thru the ringer with tests, an Angiogram on my hand, EMG's for hand numbness,(which has turned out to be yet another problem all together) etc. Not to mention all of the meds they added. They used Alprostadil for my infusion. My rhem. did say some people need to have this infusion every three months. I hope I don't get to that for a while. My raynauds is pretty bad, they tell me. I don't have much to reference this on, as I don't know too many people with Scleroderma.. I get a few months break in the summer where the attacks are as frequent, unless I stick my hands in the freezer without my gloves. I am just hoping that the doctors don't put me thru the ringer again this winter. I dread winters as it is. Take care. Patty
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