Hello. I’m hoping to hear some hopeful news. Started metho injections 2 weeks ago, first blood test due tomorrow and so far ok. I’ve always been fit and active but for past 5 months done very little as knee swollen. Since having it drained a month ago I’ve managed to do about 45 min walk couple times a week. Since metho I’ve noticed that when I went for a walk for about a 1.5 hr I felt so tired later in the day but really off and lethargic/ tired more so the next day. Sleeping ok. It’s so hard to watch hubby go walking , I just feel in despair. I know it’s early days but I’m really hoping that this will improve , or, is it a case of this is now my life? . I know I have to pace myself but I feel I need hope. I had a lovely day at Bodnant Gardens with hubby, all the stunning trees, I had forgotten how to feel happy and felt me for the first time in a long time. I’m just so weepy , angry, frustrated and totally fed up.
Any hopeful news welcome , thank you and sorry for the rambling post
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HappyD34
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Hi I am a walker on Methotrexate I note you have only started taking it its early days and it takes the body a while to adjust at first I was very tired and headaches. In terms of walking some days I can walk for a while others I can't. I go on walking trips and can do a few miles my partner laughed at me the other day as I told him do I have to walk to the bus stop. Reminding me of my walking trips.
Hello. Ahh thank you for replying. Yes, I’ve noticed that headache starting to creep in but nothing that I need paracetamol for so that’s really helpful to know that the early days can be as I’ve described. I appreciate that ☺️. Nice to hear that you’re walking .
Hi 👋 I found methotrexate makes me very very tired for a few months. Extra folate and drinking more water may help you. Just walk as much as you can, and expect some pain. Try not to focus on it, easier said than done! This damn disease can be so depressing.
Hello 😊. Thank you. Did your tiredness get better over time? I do drink min of 1.5 litres of water a day and up it to min 2 Ltrs day before and after my injection. I take folic acid 6 days a week . Thanks for your hugs 🤗
be kind to yourself still early days. So if you fancy a walk go but maybe not as long as you are used too. I had MTX at the start and it made me so tired.
You need a few months to see how your body copes but if not feeling great always talk to your team 🥰
As others have said early days, I was told it's a bit of a roller coaster first year on MTX.
Like you I was very active and walked loads, RA was a big change for me and OH who is still at 72 fit as a fiddle. Both of us have gone through what I describe as a grief period, over the changes in my health. I've had to gently help him realise I'm not the gal I was. It's hard for both of us , to accept I can't do what I did, need to lower my sights trip wise. I encourage him to go where he wishes and enjoy his outings. I look for ways to join him without the difficulties of keeping up with him or going the whole trip.
Fatigue is a constant with RA and the meds, listen to your body try to be realistic about what you can manage. When I'm in a flare walking is a no no for me and have being explaining gently to hubby to not expect me to keep up like I did. I have got rollators for these times one with a seat other just for walking. When I'm pain free ( well less pain) I do exercise and walk more with a walking stick.
Caveat I also have osteo arthritis hence why I'm in constant pain and fatigued. As others have said we're all different so you may find things settle more to your usual routine. Suggest you're clear with hubby about how you're feeling what you can manage, don't be a "hero" as it were.
Hi Happy 5, thank you. Sounds like you’ve gone through a tough time, acceptance is a huge part isn’t it. Thankfully hubby is the best and so understanding, it’s me that puts the pressure on myself. Feels like I’m living in someone else’s body and even the mind at times. Take care xx
I think you just need to give yourself a bit more time 😀 A year ago I was diagnosed and started on Mtx. At that point I was using a wheelchair, couldn't dress myself, open a bottle etc. Over the next 3 months and with a couple of steroid injections and my knee draining I started to improve. The fatigue was still bad and most days I needed a mid afternoon lie down. I posted on here about being devestated that I could no longer do kettlebells or yoga and someone replied saying give it time and your future may involve these things but also may not 😒 In April this year I started aquajog twice a week and a month or so later picked up yoga (doing it at my pace) and a couple of months ago I started kettlebells again, although I do have to go steady and use light weights. I suppose what I'm saying is, you can get back to some sort of normal but also you have to listen to your body. The best thing, once you can, is to strengthen your muscles to give the best support you can to your joints but whilst being aware of how suddenly a flare can floor you again. Hope you get back walking soon 🥰
Oh Cat E thank you so much for your reply, that really does give me hope . I’m not the most patient of people but having to learn to be, character building is the phrase some use 😁. Sounds like you had a right battle on your hands but delighted to read that things have s9 much improved for you, long may this continue. All the best 😊
Hi I was on methotrexate at various doses for years. It can take up to three months to really work and for your body to get used to it. When I was diagnosed in 2014 I went from being fit and very active to being a person who struggled to walk. I did get back to normal once my meds had been sorted. That took quite a while! I ended up on a combo of hydroxy, MTX and leflunomide. I never liked MTX it made me nauseous, tired and low for a couple of days each week but I put up with it because it worked. Thankfully I was able to come off it when I moved to Baricitinib which I really like. No nasty side effects but as warned it has pushed my cholesterol up and I know they usually stop it at 65 which is only a few years away for me.
Don't be afraid to push for new drugs if things don't work for you but remember that all drugs have side effects and most of them have a bedding in period. There is every chance you will get back to who you were before. It might take a bit of time and fiddling around to find which regime suits you. Unfortunately with things the way they are you will have to get comfortable with advocating for yourself and being persistent if things aren't going the way you want.
Be kind to yourself. Finding out you have a chronic lifelong condition and being in pain and uncertain of the future is all pretty rubbish. Most of us remember those days and I'm pretty sure all of us still have moments where a good cry is called for. Things will undoubtedly improve from where they are now
Hi there. Thank you, this too gives me hope . I think I should cut these out and pop them on my fridge as a good reminder 🥰. Good advice about the drugs and so pleased to read you have one that suits. 3rd injection today and first bloods taken so all a waiting game. Wishing you well and thanks again 😁
I suffered from multiple symptoms, on and off, for several years before finally being diagnosed with psoriatic arthritis about 5 years ago. By this time, I couldn't hold a cup of coffee in one hand and sometimes had to ask my husband to cut my sandwich in half for me. doctors asked if I felt tired all the time and I said no, not really. Just aware that I'm no spring chicken (late 50s at the time). Sulfasalazine helped my joints a little, but not a lot, so mtx was added. After about 8 weeks I noticed a further improvement. But still experienced some (mostly milder) problems with multiple joints most days. Then, quite suddenly, I felt massively better after 11 months on mtx. Not only did my joints start behaving but I also suddenly had loads of energy. It turns out that I HAD been tired all the time, but I was so used to the fatigue that I just thought it was normal. 3 1/2 years later I still feel great most of the time. I walk, swim (pool and sea) and do some heavy duty gardening. Some of my joints (especially in my hands) have suffered permanent damage, so if I overdo things I have to back off for a couple of days. But in general it is now my husband holding me back from exercise rather than the other way around. Sorry about the rambling post, but I think it's important to be realistic. It took the best part of 18 months to get me to this condition. Not everyone has this much success with their meds. I still have occasional mini-flares. I am aware that the meds may not work so well for ever. BUT, for the time being I think I am fitter and healthier than many of my contemporaries. Fingers crossed you find the right meds quickly.
Gosh, that’s absolutely wonderful to read 😊and thank you so much for sharing this with me. Long may you continue the way in which you are. Message that’s coming loud and clear is it’s early days and it’s a roller coaster, mainly dips until you get used to it. All the best
Don't forget that you are suffering a bereavement - for your previous good health - and are faced with the prospect of having to manage a long term illness with all the implications for your future work, leisure, relationships, etc.
It takes time, months, sometimes years, to adjust to this different future. You will feel tearful, tired, frustrated and angry.
Your physical health will improve as you and your team find the best ways of managing your long term illness, but you have to work on climbing up the hill out of the pit you are cast into after having a diagnosis of a long term illness (of any sort).
Feel free to have a good moan on here whenever you need one - we've been there and we understand! Best wishes.
Hello Happy. It's very early days and your symptoms sound like fatigue to me. Listen to your body and rest when you need to. I never stopped walking and after a few months I was able to gradually increase the distance. I think in your case a couple of short walks instead of one longer one would be much better. Dont think too much about it, you'll get there with patience. All the best.
It sounds as though your disease is still active, and that’s probably the reason you’re exhausted and feel so rubbish. It’s such early days - in a few months time you might well be enjoying life again and this period will hopefully be a distant memory.
Sometimes it can take ages to get medication right, and until it takes effect you might suffer all the symptoms you’re currently experiencing, but that does not mean it will always be like this. There are plenty of people who respond really well to treatment and who are still active walkers, mountain climbers and cyclists. Don’t give up hope!
You might have to listen to your body to find a level of activity that suits you. Maybe little and often. Have breaks in a walk, say every 30 mins. Sit down for a few minutes, take in the view. I find it hard to know when to stop, and often over do it, but when I do remember and just rest for even a little while I know it makes all the difference.
It’s still so early in your treatment so just give it time. I’m sure things will improve, but maybe not as fast as you’d like X
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OMG what a rotten day !!
Brain fog
Fatigue
no more Moderna for me.
Feeling bad after first dose of Metho
