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Found 6 results

  1. Amberd521

    Morphea and Lupus?

    Hi! I’m Amber 33 and new to the forum. My symptoms started with numbness and tingling in my hands and arms along with extreme stiffness and weakness in my hands. My doctors thought it was carpal tunnel but it didn’t make sense seeing how I had been a stay at home mom for ten years prior. Afterwards, my hands began to swell, my hip started becoming sore, I had this strange bruise type rash that wouldn’t go away down my leg, and my shoulders began keeping me up at night. My mother passed with leukemia around this time and things got even worse. My neck would pain me constantly and felt as though I couldn’t turn it. Like I had a constant crick in my neck. The rash also spread down to my calf and I began feeling a dip in my back side near the rash. My doctor sent me to a dermatologist and a rheumatologist. The dermatologist did a biopsy that came back as morphea or scleroderma. The rheumatologist told me that he thought it was morphea and an unspecified autoimmune. My ANA came back positive as well. He said I leaned more towards lupus then anything, but still didn’t hit some of the main characteristics of the disease. At first he put me on vitamin D and plaquenil but after a couple of months it had only gotten worse. He then decided to add methotrexate but also gave me a 6 week supply of prednisone that made every pain go away. It didn’t take away all of the swelling in my hands but I felt great. I had been given it once before for an upper respiratory infection and knew it would help and now that it has ended, I’m really not sure if the methotrexate has helped or if it’s just taken some time to slowly return since I discontinued the steroids. It’s been about three months since I quit the steroids and it’s just slowly gotten worse. The doctor seemed to think the methotrexate was helping, but that I needed to up the dose from 6 pills a week to 8. Then I received a call from them the next day saying my liver enzymes were elevated and that I needed to stay at 6 until my next visit in three months. I guess I’m just really looking for some advice on what to expect. Or to maybe find someone who has had a similar journey. I’m curious why they didn’t want me to lower my dosage if my liver enzymes were elevated. I don’t understand why he ruled out systemic scleroderma - not that I was hoping for that diagnosis by no means, but it seems possible. If I have to be taken off the methotrexate, what’s my next option? He said morphea can cause fat atrophy and he thinks that’s what's happened on my back side. Will that get worse? Why in this world are steroids so bad if they make you feel so good?! I’ve been dealing with this for about a year and a half now and I don’t really feel like I’ve made any great progress. Any advice would be very much appreciated.
  2. Hi all I have generalised morphea undiagnosed for 4 months. All over front, most of back, legs and arms. Started methotrexate (MTX) two weeks ago - test dose 2.5 then 2 doses of 15mg each with a 5mg folic acid two days after. Feeling very tired, nauseous. This weekend particularly tired and nauseous. This morning - 3 days after MTX developed a sore in the corner of my mouth. Rang registrar as per instructions on the MTX leaflet. She said stop taking it until I'm seen in clinic. I said that I had read that many people seem to need more folic acid when on MTX. She said as I've reacted so soon don't take it because I would then have to be admitted to be given folic infusions? Does this make any sense to anyone? I'm the first case that the registrar has treated and she's having to ask the consultant for answers for all my questions - am I wrong to feel worried?
  3. Hi, I was diagnosed with localised scleroderma back in 2010. I started with one large patch at the very top on the back of my leg. 5 years on I now have 2 larger plaques and 4 smaller plaques. Based in the UK, I was referred to a specialist a few years ago and since then I've tried the steroid creams, PUVA light treatment and now I am on methotrexate. At 22 years of age, I don't really want to be taking methotrexate but I felt I had no other options. I want to know if anybody else has found methotrexate works for them? I am on 10mg (4 x 2.5 tabs each week) and take folic acid every other day apart from the day I take the methotrexate. I cannot drink alcohol on these tablets and I need to be careful in the sun and whilst I understand health comes first, I enjoy socialising and going on holidays. I don't know how long I will be on the methotrexate for and I often think about coming off it but then I worry in case any other patches appear? At the minute it seems to be stable (ish) and I haven't had new plaques appear since being on methotrexate. Hope you can help. Beth
  4. Hi there, Since starting Methotrexate 8 weeks ago my C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) levels have been rising. They are now doubled and CRP is now 85. My general practitioner and rheumatologist have both phoned me about it. I am having another blood test tomorrow and then rheumatologist will decide whether or not I stay on it. I was quite surprised when I heard how high it was as joint pain has eased a lot in the last month. I have developed a cough that I can't get rid of and my fatigue has increased. Has anyone else had a similar experience?
  5. SunnyBuckeye12

    Methotrexate (MTX)

    Hey everyone - I have started my 2nd week of methotrexate therapy at 5mg. It bumps to 15 mg next week and I am very anxious. With the low dose I have noticed quite a range of side effects. The first weekend all I did was sleep! Extreme fatigue, headache, and swollen lymph nodes (my blood work came back good). The second week, less fatigue but quite a headache, swollen nodes, shakiness, dizziness, chest discomfort, light cough, heart racing feeling, weakness. I have also noted some water retention (my hands swelled up really large). I am taking folic acid and multivitamins daily. I extremely worried about my dose tripling this next week-particularly the hair loss. I was just wondering what other people have experienced with this therapy? Did you have similiar side effects? Did you lose a lot of hair (ie: some, handfuls, bald?) All-in-all I have noticed its helped my morphea and LS - I also do not have the debilitating chronic pain everyday that I previously had. Thanks!
  6. sunflower

    Just diagnosed

    Just diagnosed with scleroderma, most likely systemic. Waiting for more test results. My doctor has given me a prescription for Methotrexate. He said he does not know if it will help me or hurt me and that it is my decision. What? Really? I don't know what to do, I am so scared. Please tell me your stories on this medication.
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