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Trace72
Trace72 Member Posts: 5
edited 28. Nov 2023, 14:09 in Living with arthritis

Hi everyone I’ve just been diagnosed with Pscoriatic arthritis feeling frightened by it all and finding it hard to accept it I always have been fit and healthy now can barely walk been to a Rheumatologist prescribed Methotrexate really worried by the side effects have not yet taken my first dose

any advise would be great

thanks Tracy

Comments

  • Sharon_K
    Sharon_K Member Posts: 460

    Hi @Trace72

    welcome to the community, you have found the right place for support. It is not surprising that you are frightened and finding it hard to accept you diagnosis. I think most of us felt the same. Be gentle with yourself you have got a lot to takeon board and learning all about psoriatic arthritis is enough with out coming to terms with it. Take your time we are hear and will listen anytime. If you rheumatologist has recommended Methitrexate it would be good to start it. Yes lots of drugs have a long list of terrible side effect but that doeasn't men you will experience any or all of them. Methotrexate has been used for a long time and you will be carefully monitored in the early days. Most people do very well on it but you don't tend to hear those stories as those people are just getting on with life.

    You might find this article useful

    If you have more questions please ask way, lots of people here have taken Methotreaxte. I took it for 11 years with no side effect apart from a little nausea. Let us know how you get on

    Best Wishes

    Sharon

  • Hi tracy I was diagnosed with RA in September and started on Methotrexate. I was really worried about side effects but after a few weeks no longer have them. Initially I felt sick became really hot and could not sleep. These have passed and now I wouldn't know that I had taken them.

    The pain didn't disappear straight away it has taken quite a while for it to begin to work. I have had another steroid injection and started sulfasalazine last week.

    All the meds seem to take a long time to work so don't be too disappointed if you feel no relief for a while.

    Initially all I could feel was that it wasn't quite so bad. 10 weeks ago I couldn't walk or use my hands and to day I walked the dog for 1 and a half hours and cycled to the hospital for my blood tests. Pain free and slower then usual but still did it.

    I am hoping it stays that way. I would suggest perhaps starting your meds at the beginning of the weekend so that you can manage the side effects "IF " you have any in a safe space. I used to save up films and snacks to watch at night as I knew I wouldn't sleep and the following day would be a write off. I thought of it as a bit of a sleep over with my dog. Now I sleep and don't feel sick it passed after about a month.

    I found talking to other people who have my condition really helpful as I thought I was going mad and having a break down. It is a really difficult illness to deal with and the emotional side of it is really hard. I have felt suicidal and wished to die and went from being worried about the side effects to hoping they would kill me. I have cried more than I thought was possible but things have improved and I am more or less pain free today.

    Whatever you go through or feel you are not mad and everyone I have spoken to has said that they felt the same. which sort of helped me. Patience Patience and more patience. Crying really helped me so if you feel like it do it. Try and take each day as it comes and have and use pain killers until you begin to feel the meds working.

    I used to do an hours yoga everyday walked the dog 5K and cycled to and from work. I still can't cycle to work as it destroys my shoulders and I am in agony for days afterwards and still can't do the yoga but I am hoping I will be able to in time. If not something else will take its place.Today is the first time in a year that I have felt nearly "normal". I started MXT 26th Sept.

    Let your rheumatologist know exactly how you feel as there are lots of other meds you can try. Speaking to a fellow RA patient who was diagnosed when she was 22 and is now 69 she said don't soldier on, if it hurts tell them they can only help if you let them know. She also recommended swimming as she said it was an exercise that doesn't hurt her joints and she can move around freely in the pool. She has been in remission for the past 7 years.

    It's really hard but if this emotional cry baby can do it so can you. Wishing you well and I know how scary all this is.

    much love Martyn

  • Trace72
    Trace72 Member Posts: 5

    Hi thanks for your reply so nice to hear your story the negatives and now positive it’s funny today I said to myself I wish I was dead and hope the meds kill me I just feel so emotional and hopeless also crying loads I’m finding it hard to accept as I was so lively never sat down for no longer than 5 mins , I was jogging going to the gym, cycling but now because of the pain and tiredness I sit down a lot and miss all of the exercise and I hate it I too have a dog he’s a crazy Cockapoo and is only two it’s just me and him as I live on my own, I used to take him for a walk for hours lucky if I can manage 10 mins at the moment.

    I keep reading about Methotrexate and how it affects other people seems the feeling sick the most common I have such a phobia about feeling and being sick which is really making me anxious (i sound such a baby) and a lot of people take it at night. I am definitely going to start swimming I just know this is going to take a while for everything to start feeling normal again.

    Your reply has helped me alot thankyou I hope you continue to feel better.

    Tracy

  • JenHB
    JenHB Member Posts: 130

    I started methotrexate in March and am now on 25mg. Since the start of November I was really struggling with mobility as my left knee had become very swollen and other joints (like knuckles and elbows) started to feel 'odd' and am now also on hydroxychloroquine.

    I know everyone is different but I did a lot of running and was very active before the start of my arthritis journey (which started last October) but this September I completed the local half marathon (although November was then very tough it feels things are getting better again)

    In terms of the side effects of methotrexate, I seem to be tolerating it quite well - from my own reading it seems that the folic acid that is also prescribed helps with some of them (I'm on 5mg folic acid 6 days a week).

    I second don't be afraid to cry!

  • Trace72
    Trace72 Member Posts: 5

    Hi

    Thanks for reply well done for completing half marathon that gives so much hope, I have every joint that’s stiff and painful my right ankle and right hand knuckles are there worst at the moment I also have dactylitis on both hands two fingers on each hands I have been given folic acid to take as well with the methotrexate so fingers crossed it helps.

    good luck hope you continue to feel better

    Tracy

  • Thank you for your lovely comments. It's all true this is a life changing diagnosis you are going to feel really emotional about this. Things have slowly gotten better for me and it has taken a long time to accept what has happened to me. I have been really depressed ,really angry, cried loads hated my life wished I was dead a complete mess at times but all of that is normal. You kind of grow out of that experience it's like the dark night of the soul or something but it passes.You will be amazed when you look back at this time and realise how strong you are how courageous and determined. It is hell but it does get better but you need patience and try t take little steps when you begin to get some relief. Don't try and do what you did before like I did and ended up in agony for weeks. Take baby baby steps and build from there.

    If you ever feel really down or just need to moan ring the help line here. The time I have it has turned my day around it really helped me when I was in a crisis.

    Take really good care of yourself things will change.

    All the best Martyn

  • Jane68
    Jane68 Member Posts: 29

    Hi Tracey,

    I'm 54 and was diagnosed in the summer with Rheumatoid Arthritis. I did a 6 week course of steroids and then started Methotrexate 10 weeks ago. Like you I have a phobia of being sick but was told that the injections reduce the chance of it happening. I told the consultant about my phobia and was able to get the injection pen. It's easy to do and the side effects honestly haven't been as bad as I feared. I can notice a slight improvement in the stiffness and pain - they said it could take 12 weeks.

    Let us know how you get on 🙂

  • Trace72
    Trace72 Member Posts: 5

    Thanks everyone for your comments feeling so low today fed up with this pain and not doing what I used to do it just seems such a long road ahead