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amberjolie

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About amberjolie

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    Ontario, Canada
  1. Taking myself off meds...

    Hi! I obviously don't come on here often, since it's been a month since your last posts. Anyhow, I didn't discuss it with my doctor yet (my next appointment with her is in October), but I did leave a message with her receptionist about what I was going to do, and I didn't get a call back, so she must not be overly concerned. I am noticing my muscles seem to be getting more tired again. Nothing worse about the bowels (hopefully that stays that way). I actually do have thyroid problems and am on medication for that (didn't stop those meds - I figured those were pretty important to keep going on), and I'm pretty sure I've been checked recently for my levels and I was ok. So I'm just playing it by ear to see if I can handle being off them. I'll see what the doctor says in October. Thanks for all your replies!
  2. Taking myself off meds...

    I know, I'm insane. But I've noticed that when I'm on azathioprine and methotrexate, I get either weight gain or water retention and my clothes don't fit anymore, and I get depressed over that. And I'm thinking, I'm just fed up with the whole taking medication thing. So I decided to stop for now. My joints were starting to hurt again anyways, so I'm wondering if the methotrexate stopped doing it's thing anyways. My only concern is that about a month ago I was on vacation, and had been off the aza and MTX due to having a bad cold and wanting to help my immune system get over it (that's when I realized I lost "weight" again before putting it back on after getting back on them), and the first day I was there, I had a terrible bowel accident. Maybe it was the whole traveller's bowel thing, but I didn't make it to the bathroom, and what a mess! I felt absolutely horrible because it had never happened like that before! But I'm worried maybe going off the aza will make my muscle tone even worse "down there" and possibly lead to more of these incidents. Anyways, I guess this is just a depressed rant or something. Even though I'm not nearly in as bad a shape as many of you on this forum (no lung or kidney involvement), I'm still just so sick of being sick... Sorry for the rant! :temper-tantrum:
  3. Hi Gloria, I'm not on here often, but saw your post. I'm glad you were able to see someone who obviously will help you as much as they can. I also have diffuse. It didn't get quite as severe as what you're experiencing, but my skin was quite tight on my hands and arms and chest. I've been on methotrexate for awhile now (can't remember when I started it, maybe a year or year and a half ago). My skin is softening, maybe from the methotrexate, maybe on its own. Also, I've had the digital ulcers, and I find what worked for me was nitroglycerin patches. I would use them when I had an active ulcer, which seemed to prevent them from getting too big, and helped them heal faster. I haven't had a digital ulcer for awhile (maybe the meds, maybe remission?), but it is getting to winter now, so we'll see what happens. I had heard that cellcept is also a good medication (I believe that was one my rheumatologist wanted to try for me, but for various reasons I haven't yet tried it). I hope the medication works well for you and you get some relief of your symptoms!
  4. Smaller mouth...inside not out?

    Interesting. My upper lip is definitely thinner than it used to be, I find it hard to eat things like burgers and even bananas that require you to open wide for a bite, and I can't whistle or make "fishy" faces anymore :( But I'm not finding myself biting my tongue or cheek any more than usual. Although, when all this first came about, I did notice a tightness in the skin behind my molars (the part that connects the upper and lower parts of the jaw, if you can picture it). Now the outside seems to be tighter than the inside. But maybe I've just lucked out in not biting things. But I also find I tend to clench my mouth shut a lot now, so that could also be what's preventing me from biting my cheeks or tongue.
  5. Flashing lights

    I get migraine auras, which I would describe as dancing/flashing waves in my eyesight. I never get the headache afterwards, which I am very thankful for. I saw a neurologist, and after an MRI to confirm nothing else was going on, he said it was likely migraine auras. So to be safe, you should probably consult with the doctors, but that may be all it is. One way to tell if it's in your eye or a brain-related thing - close each eye - if you see the same thing in each eye, it's likely related to the brain. If it's only in one eye so when you close it you don't see it with the other eye, then it's likely eye-related.
  6. Too "young" to have circulation issues?

    I can somewhat relate. The first rheumatologist I saw didn't do much for me, and after I brought up new symptoms I was noticing for about three appointments in a row, he said that he thought I was too obsessed with my health and that I just needed to accept the fact that I had issues (which at the time he felt was just Sjogren's, even though I was trying to show him my dropped capilliaries in my fingernail beds, and my skin changes). My new rhematologist is awesome. She was incredibly surprised that even though I got digital ulcers back in 2009, I wasn't diagnosed with scleroderma until 2011 (the first two years were with that other rheumatologist). Anyways, I know you're afraid no one else will see you, but keep trying. Maybe you'll find someone who will actually listen to you. There are some doctors out there who will, it's just a matter of finding them. I can't believe the doctor said, "Most people are happy to find out there's nothing wrong". If there was nothing wrong, why would you be suffering all those things?! You KNOW something's wrong, you don't have to be told that. You just have to be told WHAT is wrong, which is what she's not helping you with. I hope you're able to find some answers!
  7. Remisson?

    I was at the rheumatologist a couple of days ago and she thought my skin might be starting to soften. She might be right. I had a question regarding remission. If the skin softens, it seems (in my online research) that it also means that the danger is past in terms of organ damage (assuming none had occurred yet, which seems to be my case). Is that true? If the skin softens, does that mean things are going into remission? Does that mean I would be out of the woods in terms of organ issues? What does that mean if I've got more of a mixed connective tissue disease? Does the myositis part of it also go into remission or no? What about the Sjogren's? Or is it just the scleroderma part of things that dies down? Any info or experience you could share would be great. Thanks!
  8. Advice needed about treatment for ulcers

    Hello! I get ulcers on my fingers as well. I've been fortunate to have them be relatively small (I have had them very large before), but maybe that's because of what I do when I get them. I often use polysporin on them and put bandaids on them, but I don't know if that really helps in the long run other than to reduce some pain for awhile, because they don't seem to dry out well once they're healing. But what seems to work for me are nitroglycerin patches. If I have an active ulcer, I just keep using them each day as prescribed and I think they might be helping to keep the ulcers smaller. So that might be something to try.
  9. Eosinophilic Fasciitis

    Hi Andrew, I might have EF - I never did the muscle biopsy because I was told that the treatment would be the same regardless of what sort of myositis I've got, so I'm not sure what kind it is. I tried prednisone for a short while, and I thought it was helping a bit (it was at least decreasing my CPK levels, or whatever it is that is for myositis, I can't remember!), but went off it, and am currently on azathioprine. So far that doesn't seem to be doing much (only been on it for a couple of months), and in general the muscle weakness and stiffness isn't getting better. I hope you're able to find something that works for you!
  10. I knew it! Diffuse...

    Hi! You're right, it wasn't a shock, because yes, I had suspected it all along. And obviously my particular case isn't the exceptionally bad type of diffuse, because I would've progressed more quickly and severely if it had been. So at least that's positive. So far I've avoided any of the particularly dangerous manifestations like lung or kidney or heart involvement, so hopefully this keeps up! Thanks!
  11. I knew it! Diffuse...

    Today I saw my rheumatologist and the med student who saw me first said something like, "So you have diffuse systemic sclerosis?" And I said that as far as I knew, I had been diagnosed with limited. He said that the extent of skin involvement would make him think it was diffuse, and that we could ask the rheumatologist when she got in. So essentially I found out from her that yes, she changed her diagnosis based on my skin involvement. I never knew that until today! I always wondered why she would think I had limited when the skin was tight on my chest and stomach. So basically the only thing different she suggested is to take my blood pressure twice a week and record it, so I can notice any changes. The fun continues! :rolleyes:
  12. Going off Plaquenil

    Hi judyt, The rheumatoloist is saying I have myositis, although technically a proper diagnosis needs a muscle biopsy, which I decided not to do. But my CK levels were high (should be 160, I'm at about 1200-1400, which is considered mild, because myositis can bring you to 12000), and I had an MRI which showed fasciitis. But even though my CK levels aren't terribly high (they climbed to that level but kind of plateau'ed there), she did some muscle strength tests, and saw that I had a significant amount of weakness. In my shoulders, and my abs (which surprised me, I didn't realize I was so weak there). The prednisone has helped somewhat, but we'll see what the azathioprine does. Shelley - interesting benchmark, the toe-touching. I should try to figure something that works for me (toe touching will be an impossibility for me - I couldn't do it when I was healthy and in good physical shape either! ;) )
  13. Going off Plaquenil

    Plaquenil didn't seem to work for me when I tried it. There are of course other medications out there that perhaps Gareth would do better on. I was put on methotrexate instead, and didn't really notice much of a change, from what I could tell. Then I started wondering if maybe it was helping a bit with the joint pain (although it did nothing for fatigue for me). Then my rheumatologist put me on prednisone (a couple of months ago) with a taper-down dosage. I noticed when I was on the highest dose, my fatigue seemed to have lost it's edge, which was nice, and my joint pain decreased a lot, but as the dose went down, my fatigue started coming back. So I was able to get back on the top dose again for now, but will have to wean down again over the next few weeks, because she doesn't want me on it long term. I've now just started azathioprine, which she said should help with the fatigue and muscle weakness, but I've gone off the methotrexate for now. If the joint pain comes back, I may go back on that. So maybe one of those might be helpful? Although you have to get monthly bloodwork done to monitor blood cell count and liver function, so they can monitor if the meds are affecting either of those and stop it at the first sign of any issues.
  14. Embarrassing gastrointestinal issues

    Hi Shelley, Yes, I was thinking about that (getting better by June), but I'm guessing that won't happen. Now that I think about things, I really think it is probably a rectal prolapse (but I'll let the doctor make the diagnosis :) ). If it is, I've actually had it for years but just figured it was chronic hemorrhoids. But it only more recently started to be a problem. I'm thinking though that she'll probably see it and then refer me to a colon specialist, which of course will take more time. Hi red, The prednisone is getting tapered off as we speak. She only had me take 20mg a day for 2 weeks, now I'm on 15mg a day for 2 weeks, then it'll be 10mg, then 5mg, then stop. I'm wondering if it's just so she can see if it makes a dent in my myositis (she's following my CK levels). So we'll have to see what happens when I'm off it again, and whether she feels a more lengthy dose is needed. My big fear was the weight gain/facial hair some people get, so I think that's why she gave me a rather low dose and did the tapering off thing.
  15. Embarrassing gastrointestinal issues

    Got an appointment in June. Often takes awhile to get into a specialist in Canada. But still so far so good...
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