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  1. Yesterday
  2. Hi Dimarzio, We do give members the option of including their date of birth and location when they join; we are very careful, however, not to give out any personal information on the Forums as per our guidelines. Kind regards,
  3. Happy belated birthday Quiltfairy. Your post did make me wonder though how many sufferers are surviving until their 70's and 80's or even possibly 90's. Do we have any data relating to forum membership on this? I can't remember whether I gave my DOB when I joined or not. On that subject, it would be interesting if we could compile some demographics of our membership, e.g. sex, age range, location, etc. What information do we actually have? (Subject to GDPR compliance of course).
  4. Evaluation of response criteria in rheumatoid arthritis treated with biological disease–modifying antirheumatic drugs. EULAR response criteria overestimate the response under Interleukin-6 inhibitors treatment because the acute–phase reactants improvement largely contributes to the Disease Activity Score 28 improvement. PubMed, Arthritis Care Res (Hoboken), 05/06/2019. (Also see Biologic Agents) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Chronic Q fever associated with Systemic Sclerosis (SSc). Chronic Q fever preceding SSc was associated with a milder course of SSc without the necessity of immunosuppressive drugs, while chronic Q fever development due to immunocompromised state was associated with a more deteriorating course of SSc. PubMed, Eur J Clin Invest, 2019 May 11:e13123. (Also see Systemic Autoimmune Rheumatic Diseases) ) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. Happy, happy birthday!!! I hope you were able to enjoy some little fun yesterday - maybe a nice meal out at a favorite restaurant or your son made that favorite dinner? Take care; we're all thinking of you. Margaret.
  7. Thank you on the good day. I made it 64 years today.
  8. Last week
  9. Hey Janet, I get the feeling of being unreliable. I always have the best intentions, and frankly 95% of the time, my plans don't carry out. But thats OK. I used to be very hard on myself. Now I figure "it is what it is!" Nothing I can do about it, other than be kind to myself, and stay on the positive side as much as possible. Which is my natural inclination so that helps. I know there is no cure for me, but I won't waste the rest of my days, letting Scleroderma be my life. I have Scleroderma, I am NOT Scleroderma. I rarely talk to people about it because most don't understand. But I have a small tribe that literally hears about all of it, and they understand. It's taken me 18 years to get to the comfortable spot. Give it time, don't overthink it, and try to go with the flow. As far as cost, I couldn't tell you about that. Our healthcare is so much different than yours. I have insurance, good insurance, and although I pay the monthly premium, I never have any doctor costs because my insurance pays for it all. I believe we have at least one member here from OZ, and I hope they see this post, and can chime in, and give you some info. Don't "what if yourself to death" , just take one step at a time, and seek help, and answers one small step at a time. :) I will try to wrack my brain on what the name is of the member from OZ. Maybe we can get you connected.
  10. Can CBD Really Do All That? How one molecule from the cannabis plant came to be seen as a therapeutic cure–all. New York Times, 05/14/2019. (Also see Endocannabinoid System) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 06/21/2019.
  12. Hi Quiltfairy, I'm truly sorry to hear that you're suffering so much at the moment. I do wish I could offer you more in the way of comfort and as Sweet has said, you're incredibly brave, considering all the horrible symptoms you have to bear each day, with little or no respite. I can give you a couple of our ISN hugs, though. My very best wishes to you,
  13. I would say that the psych meds they put me on made me want to give up too. I binned the lot of them and my health improved quite quickly. A lot of my digestive problems were down to those meds. I still take a low dose of PPIs which have resolved most of my reflux and swallowing problems and a calcium channel inhibitor which is supposed to help the Raynauds (though I can't see that it's making a jot of difference). Once the psych meds were gone, I began to feel more positive and decided to fight my mobility problems, gradually increasing my exercise regime from a level where I could barely walk or climb stairs to a level where I am now able to walk several miles and am even beginning to run short distances. Do not despair. It is possible to fight this disease and many treatments are available, though sadly still a fair way off finding a cure. Keep your spirits up and give it a go.
  14. Hey lady - I'm curious as to whether your doctors have ever suggested you trying IV Ig infusions? Gareth's rheumatologist was straight out of Johns' Hopkins scleroderma center and said that is the latest trial for scleroderma. It got brought up a couple of years ago, when he was having esophagus issues. Her comment was *he's already getting IV Ig infusions for his immunodeficiency. IV Ig would be the next step if the Plaquenil stopped working completely.* Curious as to if any others have been recommended IV Ig therapy for scleroderma. It may be only a trial test at Hopkins, too? Take care, everyone. Margaret
  15. Would you be able to give me any idea of what the medical cost would be in the US? Roughly? You guys have been through this, I thought you might be able to give me some idea of what would be involved, time wise and cost wise in the US? Thank you again for reading my post and responding to it. I whine and whinge and carry on, don’t I? Kind regards, Janet
  16. You took the time to read my post, kindly, understandingly replied and even looked for a specialist in Australia! So, so kind of you, Pamela and Margaret. Thank you. I had been reading a lot about GI involvement & Scleroderma. Your replies encouraged me to read more and watch a few presentations by doctors in the US. I’ve been thinking about contacting a specialist in the US or even travelling to the US and go to a reputable Scleroderma Clinic and look for proper diagnosis if there is one for me. First of all I don’t even know what the medical costs are going to be in the US. Thousands, tens of thousands or even more. On the other hand, what if there is no cure or treatment for me? I just don’t see a point anymore. Doctors here don’t seem to care really. They see me in pain, they see me having real trouble walking at times, or crying my eyes out from all the pain, etc., but I keep getting sent back to the Psychiatrist. I am on antidepressant medication and to be honest I don’t see any point in seeing a Psychiatrist because I am in pain and I need relief. I am constantly exhausted. I have become a unreliable person. I am afraid of making simple plans because there is a chance that I can’t stick to it. Even when I manage to go somewhere I end up feeling embarrassed and regret attending any outings. I can’t sit for long, I look 7 months pregnant, in such pain most times that I can’t hide very well at all; I feel that I make people feel uncomfortable. I am fed up having to tell people about my chronic pain and everything that is going on. What if the doctors in Adelaide Scleroderma centre (suggested in your message Pamela) don’t take me seriously because I have already seen a Rheumatologist here in Perth who says regardless of my test results and symptoms I don’t have this condition because my skin is fine and the condition is rare? I don’t know about the US but I believe the Aussie doctors back each other up regardless. They wouldn’t contradict their colleagues. It was such difficult task even to find a surgeon who would be prepared to do a diagnostic laparoscopy, one year after my hysterectomy by another doctor. ( I live in Western Australia not in big cities like Sydney or Melbourne). I am so lost and exhausted. What do I do next? Where do I go? I have referrals to see a new Gastroentrologist and a pain Specialist. Is there a point? If there is one , what is it? My life has turned in to a complete disaster. I wish I didn’t have to think and there was someone who could make these decisions for me, find a good doctor, make appointments, do some of the talking even, etc. yep, even those simple things I am finding difficult.
  17. Hi Janet - one can feel your pain and frustration through your post. None of us are doctors but we do have life experiences behind us. My own son is the reason I am on this site and, like you, he had all the positive blood work, but only internal involvement - no skin issues or Raynaud’s. He did suffer from severe depression at the onset and the doctor told me that the same internal process that is wrecking havoc inside your body also affects the chemicals in your brain. Your brain is a finely tuned machine - relying on the rest of the body for support, especially your stomach/gut. He was put on a low dose SSRI and it has helped greatly. You do have a reason to live. Also, the first Rheumatologist said sine scleroderma, but the specialist rheumatologist said UCTD - Undifferentiated connective tissue disease. This does not mean you're not suffering from internal issues and it can be just as damaging internally as sine scleroderma. Gareth needs his esophagus stretched and opened regularly; it looks like a curly straw from the fibrosis and hardening. It took an additional 2-3 hrs to operate on his neck because the doctor had to *chisel his way through wood* - his esophagus, throat, and carotid artery had congealed into one hard mass. He was put on an anti-malaria drug (Plaquenil) when first diagnosed and has been on it for almost 13 years now. It did help greatly on softening the esophagus and making food go down easier. The doctor said it was a med to *jump start the immune system*, which seems contradictory to what you would want, but it works, and many on this site take it. Perhaps, you can go back to one of the doctors and ask for some trial meds and SSRI and plaquenil. Go in educated on the disease and how these meds may help. Give them this site information - it has a huge library of up to date medical information. And above all - you have a new family of friends here that you can talk to and will offer support. Take care, everyone. Margaret Mom to Gareth, 31y/o, DS/ASD
  18. Angelique, You are so welcome, and I will look forward to hearing about your follow up. Have a wonderful weekend!
  19. Hello Sweet, Thank you for your insight. I appreciate you reminding me that I need to be patient regarding a diagnosis. My Rheumatologist gave me information on Cellcept and Plaquenil. After a series of bloodwork, she preferred I take Cellcept. I will see her next month to further evaluate. I'm just thankful I'm tolerating this medication. All too often I have gastric upsets with so many medications. As for the hyperpigmentation, this made great strides during the period when I wasn't on any medication for this illness. Now I shouldn't complain since it's fairly even in color. Most people think I'm suddenly tanned. Although I would prefer the glow of a sunkist tan. I should just be content it's a fairly even color in most places. Thank you for the advice regarding the ring sizing. I've had a new ring sitting at the jeweler for 6 months waiting for sizing. I will see if they can do what you suggested. Appreciate all your input Sweet.
  20. Hi Janet, Reading your post made me very sad, because there is hope. My heart goes out to you. I have to say I'm disappointed in your doctor. Here is a link to a specialist in Australia, and I hope it's different than who you are seeing. If it's not, I would find another Rheumatologist. Scleroderma is rare, BUT symptoms vary from person to person. There is no blanket list of things you need to have or tests. I feel your doctor is doing you a disservice . Don't give up, see another doctor that you feel is listening to you and that you can communicate with well. I will also suggest finding someone to talk to. A trusted friend, a counselor. Just talking to someone can help so much, to wrap our minds around things, and reasons to push forward. Please keep us posted, and much love to you.
  21. Hello, Welcome to the forums. I'm sorry you are experiencing so many symptoms that are hard to explain. The nature of any autoimmune disease can vary so much from person to person. First of all it's good you are seeing a Rheumatologist. Often times, it becomes test after test to rule out different causes, and more often than not, we don't get solid answers. Easier said than done, but try to go with the flow, and let your doctor work through the process. It can actually take years to come to the proper diagnosis, if any at all. I know that's not encouraging, but it's the. nature of the beast. Are you on Plaquenil? I am, and it has caused the pigmentation problem you mention. I was told its from that. I'm very mottled. I was also told if I went off it, it would go away, but that's. never gonna happen. LOL On the swelling versus tightness, the skin gets thicker so that would account for your rings not fitting. I have had mine sized a few times, and actually had a new band put on the opens and closes and is adjustable. On the ultrasound, he/she could be looking at bone structure, as the hands can change with CREST. Here is a link to CREST syndrome that might answer a few of these questions for you. Muscle pain is often associated with scleroderma. Symptoms will come and go, leaving you feeling like you're going crazy, but I assure you, you are not. Keep us posted on your progress. :)
  22. Hello, I'm so sorry to hear about your wife. Here is a link to Scleroderma Experts. There doesn't appear to be one in your area. But a good start is to find a Rheumatologist. I would suggest the U of WA.
  23. Hello my girl! Just wanted to give you a big hug for being the brave one you are!
  24. Hello, I'm new to your site and done numerous searches to become more educated about scleroderma. Being newly diagnosed after nearly a year of discomfort, pain, several diagnoses and switching Rheumatologists here I am. Yes, i do have a few questions. My history is I'm a type 2 diabetic under control. I've been on prednisone on and off for nearly a year. I developed hyperpigmentation over 90% of my body. My current Rheumatologist said the hyperpigmentation on my hands is typical of scleroderma, but the rest of my body she is clueless why? I also developed Raynauds 3 months into this process. Presently I'm on 2.5 prednisone daily and I just started Cellcept 1000 mg daily. My questions: the Rheumatologist told me that I don't have swelling of my fingers, it's skin tightness from scleroderma. Yet I can't get my rings off like I did before this happened. So have any of you had swelling of your extremities ie hands and toes? I've also had bad muscle pain in my thighs and calves which seems to have subsided in the last month. Is this typical of scleroderma? My Rheumatologist is sending me for an ultrasound of my hands, anyone know why? Let me add that the doctor is new to me. Thus I didn't ask as many questions as I should have, partly because I was trying to absorb all the information she was telling me. She had resident in with her, so she was explaining to him her thoughts about my condition. She mentioned Crest etc. I would appreciate anything you can share.
  25. I’m always wanting to go to any one of my doctors and hear “you are doing great, we don't need to do anymore tests or change your medications”. But that is only a dream. I saw my gastroenterologist Monday; my choking is getting worse, the part that opens and closes is getting smaller and the part in my throat between c4-c5 is getting harder. The funny thing about this is, it is not the little uncoated pills, which go down better than the coated capsules. An appointment is being made to see a speech therapist. I was also told I can open the capsule and crush the others, except the pain meds and the one I can not say, let alone spell! A good friend tells me to always remember to say it is what it is. My son is now living with me; it is so nice to have support in the home. I wi!I be keeping my thoughts about everyone that has scleroderma. Quiltfairy.
  26. My sincere regards to you all, I am tired, in pain, and struggling. My story is very long and boring. Things went very wrong about 3 years ago. I became particularly ill after my hysterectomy which I thought was the cause of some of my problems. I started losing weight rapidly and developed a lot of Gastrointestinal symptoms. I started feeling the cold all the time and haven’t stopped since. I have a lot of abdominal pain and distension. I feel the food gets stuck in my oesophagus. I feel nauseous most of the time. Sometimes the abdominal pain is so great that even walking or sitting hurts so bad. For a while my doctors thought something has gone wrong during the operation but after a lot of investigation they couldn’t find anything. Eventually one doctor suggested that get tested for a few autoimmune diseases and I was ANA & SCL70 positive. I was referred to a Rheumatologist (one of the few doctors with special interest in Systemic sclerosis and one of the 8 on the advisory board of Scleroderma Australia.)After checking my lungs and heart, etc. she said I don’t have scleroderma because my skin doesn’t show any thickening etc and the type that effects the internal organs such as gastrointestinal system and it doesn’t effect the skin which is called “Systemic Sclerosis Sine’ Scleroderma”. She said I don’t have it “because it’s very rare”!!! I have done a lot of research and all my symptoms are those of what she called very rare, so I can’t have that. I tick all the boxes. Now, I don’t really care what it is called but it has destroyed me. The pain, exhaustion and all that goes with it has proved unbearable. Nothing seems to help. I have tried all sorts of medications and diets but nothing seems to work for me. I feel incredibly sad. I feel extremely depressed. I can’t see why whatever it is that I have, rare or not, just end it for me quicker and ends my suffering. I haven’t any direction or support from any of the doctors I have been to in terms of how to manage this thing. Every now and then I might feel a little bit better and immediately I think that it’s all over and start planning and get my hopes up. It doesn’t take long for the whole world to come tumbling down. Sometimes not even half an hour. I don’t know what to do. I have made my doctors to get blood tests done & check for SCL70 & it keeps being positive. My symptoms persist. I have no hope. No reason to go on. I seem to be forever in bed. Severe Gastrointestinal problems and joint pain in different areas that flare up badly, etc. I am so tired. I don’t know how to go on. I don’t know how to stay positive. I am sick of going to doctors and come out empty handed. Sick of explaining my symptoms to new doctors. I am drowning is an ocean of sadness and despair and don’t know how I can pull myself out.
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