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Everything posted by gigi08

  1. @Shelley - yes, I sure do wish I would have gone there so much sooner. I may not be suffering as I am now. @Amanda - thanks for the advice. I have been on 8 mg. of methoprednisolone for about 5 years. My next visit at Johns Hopkins they are going to start getting me off of it and I have no problem with that. @AmberJolie I hope you don't get the ulcers back. I know how painful they are. Mine still hasn't cleared up. They told me to try to avoid trauma to the hands ( how hard is that to do)? I am on 2 medicines for the raynauds. I actually got my ulcers in the spring. Taking a long time for the to clear up. @ everyone. Had my apt. with my pulmonary Dr. Lungs look good. A little asthma which we knew. Did see something on the CT scan with the esophagus and is sending me to my Gastro Dr. Said he'd probably do a scope to see what's going on. Said it could be from the Sclero or Acid Reflux. On top of all this, my foot has been hurting me for about 2 - 3 months so I finally had it x-rayed. Have a fracture. See that Dr. tomorrow. I am one of those who really have a hard time dealing with all this because lately I have felt like doing nothing and I feel so guilty doing nothing. I've lost my energy. So Thankful for this forum and friends.
  2. Just an update on my condition. I went to Johns Hopkins and that was the best step I have taken. I was very impressed with the doctors. I had and they spent around 5 hrs. with me. My diagnosis was changed from limited to diffuse. I have tightening all over now. They put me on cellcept and I'm to try it for 3 months and then I return for my next visit. They said the first thing I should notice is the itchiness going away. I've been on it for a little over 3 weeks and I'm not seeing a change yet but I'll give it time. The skin tightening should start getting better too. I am getting extremely tired and don't really feel like doing anything so I just push myself. Tiredness has always been a problem with me. The ulcers are healing compared to what they were like before but that's from the Ravatio my rheumatologist put me on. I still can't stand things touching my arms. It feels like I'm in insulation and it's jagging me. That should clear up too with the cellcept. The rating on my arms was 3+. In the 5 years I have gone to my rheumatologist she never checked my skin from head to toe. They did. I did have my pulmonary function test and CT chest scan on Wednesday and I see my pulmonologist tomorrow. Thanks for all the concerns.
  3. Hi, My name is Gloria and I haven't been on here in a long time. I will type as much as I can but it is very hard for me to type. I was diagnosed with scleroderma approximately 5 years ago. I had lots and lots of questions. The things leveled out for me so I just learned to live with what I knew. Around December of 2012 my hands started swelling along with my legs. Now, 10 months later I have experienced digital ulcers and still struggling with them, skin getting much tighter from finger tips to elbows, skin sensitivity from wrist to elbows, VERY dry knuckles and skin, bones in right arm feel like their twisting when I move them and there's a spot on my wrist that is very tender. I wasn't going to write this but my husband has urged me several times to see if there is anyone else that experiences this and to see what you do. I am going to Johns Hopkins on November 5th because I feel it's time I see a scleroderma specialist. Any suggestions would be helpful.
  4. Hi Patty, I too suffer hair loss but mine is alopecia. Is yours coming out in round spots or thinning all over? Mine starts with a small round spot and gets bigger. 9 years ago I lost just about all my hair and it did all grow back in. I have thick hair. I have suffered from hair loss for the past 9 years off and on. I am currently being treated again for it. They say that stress can cause it. It is an autoimmune disease. I get steroid shots in the head around the area that is suffering from hair loss. Right now the whole back bottom of my hair is almost bald and it's working it's way up my head. I was just to the doctor last Friday and got more shots. I'm going once a month to get them. The top is still nice and thick which I am thankful for. I would suggest seeing you doctor about it because it can be caused by different things.
  5. gigi08


    I was starting to get a cold several years ago and a friend told me to start taking vitamin C and zinc. So I started taking it off and on. About a year ago I decided to take it everyday. I have been so fortunate not to get any colds. I hope it continues that way and I will continue to take my zinc and vitamin C along with all my other vitamins.
  6. Hi Sis, I was just put on cellcept about 1 1/2 months ago and I was just wondering if you were on it to help soften the skin or for another reason? I'm still doing my research on it and trying to figure out if its to help with the achy muscles and also the swelling. I was also wishing it would give me a little more energy and that I'd feel like doing things that I used to do. The doctor did mention the intravenous immune globulin to me also.
  7. Hi Teresa, You said that Cellcept is not a pain reliever. I am just wondering what the purpose of it is? I thought that was why the Dr. put me on it, to help with the joint pain. Nothing else has worked so far.
  8. Alice, It says to take the dose 1 hour before a meal or 2 hours after a meal. When do you take yours and do you have to take it on an empty stomach? I hope it works as well for me as it has you. Thanks for posting. Shelley, thanks for the information. My doctor is a rheumatologist but I am really considering seeing a scleroderma doctor in Pittsburgh. I think it's time to get a second opinion.
  9. Hi Susie, So sorry to hear about your pain. I will be starting Cellcept tonight for the first time. I've tried many meds in the past 2 years but none have helped yet. Hopefully this will. In your post you said that the other meds helped for you. I was just wondering why they took you off of them if they were helping? I was just on Humira for 4 months and it didn't do anything except teach me that I can give myself a shot :emoticons-yes: (something that I thought I'd never do). Hope you start feeling better soon.
  10. My last visit to the rheumatologist I was taken off Humira and she wants to put me on Cellcept. I'm just not sure why this medicine and was wondering who was on it and why? My biggest complaint has been the extreme tiredness on most days and my left knee hurting me really bad at times and swelling. I do have leg and feet pain. I convinced the rheumatologist to do an x-ray and MRI of the knee and today I found out that I have osteoarthritis and a meniscus tear. Does the Cellcept help with fatigue and the aches and pains? I know we are all different but it seems in the past 2 years I have been put on one medicine and taken off for another because nothing seems to help with the aches and pains.
  11. Thanks for sharing this Janey. I do enjoy my morning "cups" of coffee. Then one in the afternoon to help with the tiredness, then some more in the evening. I've always enjoyed my coffee and now it's good to hear that it could be helping me. :emoticons-yes:
  12. gigi08


    Lulu, Just wanted to share that the past 2 weeks have been the worse for me and fatigue. There have been some days that I just didn't think I wanted to stay awake and try to do what I needed to do. My biggest problem is I feel so guilty sitting and relaxing. I don't know if it's the medicine I'm on or if it is from the scleroderma but I do know that I'm not happy with it. Fatigue has been one of my biggest complaints for some time now and I feel like it is getting worse. I wish there was an energy pill that you could pop in your mouth and you'd have instant energy, but I haven't found it yet. My Dr. did give me a medicine for sleepiness but I found that I can't take it.
  13. I can't open the site either. Looks like you have to sign in to see it.
  14. I tried searching Humira to see if there are any post on it and I didn't come up with any. I was just wondering if anyone is on it and if you are seeing results with it and has anyone had side affects? I got my first shot yesterday. I told the rheumatologist that I have been having the swelling and it gets really bad in the knees and I have trouble standing straight at times. She said this would be the next thing to try on me.
  15. :emoticons-yes: Shelley - Thank you for sharing and so happy to hear that Gene is doing well. Wishing him a speedy recovery. He has a good nurse.
  16. Shelley, I'm so sorry I just got your invitation and I already ate my pizza for the evening. In fact I ate too much and now I'm just sitting back relaxing in my chair with my 2 year old granddaughter. I got to come last year and we had so much fun. I hope you enjoy your New Years Eve Party, stay warm and if you go sledding, dress warm. Only 2 1/2 hours until holiday.
  17. Thanks everyone for writing. It helps to read that I'm not the only one. Peggy, I'm thinking about calling my doctor tomorrow to let her know what I'm experiencing. She put me on a medication the last time for the tingling, etc. that I've been having in my legs and feet and it's not helping and now I have this pain.
  18. Okay - I laughed. Laughing is good for you and lately I haven't been doing enough of it. :emoticons-yes:
  19. I just need to write and share how I've been feeling lately. It's okay if no one writes back on this post but it gives me a chance to vent. I was diagnosed with limited scleroderma in May 08. It took months of meds to get rid of the hand and wrist pain but that finally happened and I've been pain free in the hands and wrist. I still have swelling and ugly looking fingers but I can deal with that. I've gone through many spells of just not wanting to do a thing. Part of me would want to but then there was the part that just said "you don't feel like it". I was tired. I was off and on with steroids. While on, I usually felt pretty good; while off, the symptoms would come back. I've also experienced the swollen knees. When on the steroids they would feel pretty good but when off, they swell right back up. I've also been experiencing this tingling, pulsating feeling, and achiness in my legs and feet which my rheumatologist put me on meds for it but hasn't helped yet. The past month I was starting to feel really good mentally and feeling like I really wanted to do something again and was able to do a few things that I hadn't felt like doing. Then, last Friday I got really bad low back pain. Since last Friday that pain has started to radiate into my right hip and now it is going down my right leg to my calf. I have been to the chiropractor twice this week and today I went and had myself a massage. On top of all of this, I started getting a sore throat (which only lasted one day) but now I've lost my voice. Today has felt like a wasted day for me because when I stand, the pain in my leg is worse, so I don't feel like doing anything. I don't want a pity party and I know that there are many of you that are in much worse shape then I am. I just get so aggravated because I can't stand to sit. I like to be on the go. I used to love to exercise and for the past year it has been a really big challenge for me to do that. Another thing - I hate popping pills, now I'm the pill popper and some of them just don't seem to be helping with what they're suppose to. Okay, that's all I have to say for now. It's just felt good to write it.
  20. Hi Vanessa, I just wanted to say I know what you're going through. I was diagnosed over a year ago with limited scleroderma CREST and I was devastated. After a year I do have a better outlook on it but still don't have all the answers I want and still have symptoms that pop up and I wonder if they're from the sdcleroderma or from something else. My rheumatologist has worked with me and has tried differant meds on me until we finally have me on the right track. We are still working on the raynauds. I get up to 5 attacks or more a day on the colder days. I have my heated throw that I keep on my chair at all time, mittens and booties that I can heat in the mircrowave and of course my heated blanket on my bed. When I'm feeling lost or alone, I get on here and read messages and I try to join in the chats when I can. There's some good advice here and I've enjoyed reading it.
  21. Hi Mando; As I read what you had written I thought I was reading something that I had written. I've been feeling the same way and my mom just said to me tonight that she felt I needed something for depression. I don't feel like I'm depressed but now I'm beginning to wonder if that isn't what it is. I go to my rheumatologist on Nov. 6th and I'm going to make sure that she knows how I'm feeling. I am just so tired, don't feel like doing anything, and want to sleep more then what I used to. I think that's why I enjoy going to my camper because there I don't have to work and I really do enjoy it. That is ending next weekend. I do push myself and when I'm camping I do get to walk, but at home, I'm busier and then I don't feel like exercising. Thanks for sharing. Not that I like seeing you feel this way but it did make me feel a little better to know that I'm not the only one.
  22. Called my Dr. today to see if I could get in a few weeks early since my knees and legs are giving me so much trouble. I just wanted to see if she could tell me if this is related to scleroderma or if I should be seeing another Dr.. She is out of the office today but they took my message and did call me back and she is putting me back on the steroids until I go back to the office on November 6th.
  23. Hi Sandra, Good question and I'm anxious to see the answers you get. I have read a lot in the past and I know that we are all differant. Keep us informed as to how you're doing.
  24. I was put on procardia about 5 months ago and my bp is going up and down. I did have a post about the tiredness but I had that before starting the procardia. (I'm sitting here right now knowing that I need to go to the store, but my body doesn't want to get up and go). It's just getting worse. I will say with it getting colder out, I don't think the procardia is helping me. I go back to the rheumatologist the beginning of November and I'm looking forward to that visit. Keep us posted as to how you're feeling and if you find anything out.
  25. I have been on medrol and when I first went on it I did feel fairly good and swelling went down. Usually when I go on a high dose and then work my way down I feel really good. About 3 weeks ago the family Dr. put me on starting at 8 a day and it did nothing for me. I am no longer taking it because the rheumatologist thought the Arava was doing the job and that I wouldn't need the medrol any more. My problems did start long before being taken off the medrol. I didn't mention that I get a feeling in my knees and down my legs that feels like something beating (like a heart beat) in there. It's a weird feeling.
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