I am in SUCH a good mood, and no one in my 'real' life gets it when I try to explain, so I thought I'd post here and share it with you lot, who'll understand. I hope you don't mind!
I have been on mtx since end Feb, and I switched to injections 3 weeks ago. And I feel SO much better than I did 6 months ago that it has really made me happy. ☺️ My pain is much reduced, my swelling has pretty much gone, my IBS symptoms are gone, the side effects are under control, and my energy is increasing! The last couple of days I have actually felt *well*, for the first time in about five years!
On Sunday, I did about 4 hours of gardening and some housework, AND went for a little swim - and I don't need to tell you lot how much of an achievement that was! Yesterday, I swam half a mile before work, worked 7 hours, came home and cooked tea, helped my son with his revision, went for another quick dip, went to my weekly singing group, and then did the weekly shop at 9:30pm! It is at LEAST 3 years since I have had the energy to do more than 2 different things in a day, let alone all that!
I still have a way to go - my hands, feet, ankles and neck are still achy, and I'm still very stiff if I wake at night and for 30-45 mins in the morning. And that means the disease is probably still not completely controlled, and could be doing more damage. But my new rheumy team has just increased my mtx dose to try to address that, and if that doesn't work, we'll try biologics...
On Friday, these new 'experts' (at Chapel Allerton, Leeds) told me that, if I'd been diagnosed and treated when I first had joint pain in about 2009, I probably wouldn't have needed a hip replacement. The first rheumy thought that too. So I'm angry with my former GP, who did not take me seriously when I described my pain and exhaustion and other weird symptoms, and told her I knew there was something wrong... I am seriously considering suing... But even that isn't interfering with feeling delighted to feel so much better again. 😌
This time last year - even just 7-8 months ago - I was feeling so miserable that I seriously thought that if I died, it might be the best thing, because it would at least mean I wouldn't hurt any more. I thought that once my kids were a bit older (my youngest is 16) there wouldn't be much point to my life, since it had become so limited, and was shrinking further... 😥 It is really fantastic to find I can do things again, to feel possibilities opening up again and to get back some hope for the future. 😍 Here's hoping all of you can find the right treatments, too.
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flow4
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I'm glad you are feeling much better. I felt similar to you before starting methotrexate earlier this year. I'm now on hydroxyquinine as well for the last 5 weeks.
I too am wondering if I have had rh arthritis for sometime. I had similar pain 5 years ago but went to a physio for a few sessions and they told me it's possibly an element of carpal tunnel and gave me exercises to do and it seemed to go away but the tiredness didn't. Pain returned a year ago in both wrists. Took 8 months before diagnosis. Like you I feel on top of the world apart from discomfort in my wrists.
Unfortunately my work involves a lot of handwriting which is getting me down and they are pushing for me to reduce my hours which I don't want.
Let's see what happens at my next sickness review in a few weeks.
Hi Matilda-- like you I was a long time before being diagnosed and my biggest problem was bi lateral carpel tunnel. As I am a Chiropodist my hands are very important to me ----- once the meds kicked in properly ( after about 6 - 7 months) my hands are fine ☺x
After restarting MTX after some curious nodules in my lungs - rheumatoid in origin - I'm heartened to hear it working well for you. Perhaps it will kick in for me too - early days with week 4 of 20mg sub-cut. My symptoms are getting worse and am in constant pain and am now limiting my activity as I know it's going to come back on me with pain.
So good to read an encouraging, joyful post! The drugs do work - so pleased for you!!!
Thanks Mike. I know what you mean... Up til a few weeks ago, I was making those 'choices' too: go shopping OR do some housework; go to work OR go swimming... It's frustrating, isn't it? 😑
One for me last weekend: do the garden, shift masses of pots and plants to get ready for a new conservatory - get lots of pain and I know it's coming. And the MTX on Saturday...
Way to go, Flow!! So pleased for you after all your difficulties with useless doctors. Enjoy the activity, but try not to overdo it just yet - leave climbing Everest for next month.
& now you know why I view MTX as my best friend....
Thanks Jacqui. There really is! I'll keep my fingers crossed for you.
Wow! That's great Flow!!
I could have written almost this exact post 2 or 3 years ago. Mtx never did 'finish the job' but it helped me get my life back. It helped A LOT. I hope things just keep getting better and better for you. Great news!
Interesting to know. As you know, I've got PsA too, and you're one of the handful of people whose experience I've been learning from. My swelling is not severe, or even noticeable to the casual observer; it's low-grade and has been almost everywhere... It's much improved but I'm still noticing it in my hands, feet, wrists, ankles, knees and neck. Hence the increase in mtx dose as the 'next step'...
I love it, love it, love it. Isn't it wonderful that we do have all these meds that can potentially turn around our lives and give us back control. Research is still making progress. So let's all look forward to a better future and raise awareness of RA/RD and money for NRAS. I'm so happy for you. All the very best.
We really ARE! I keep thinking about my dad, who was dx with RA (tho plus psoriasis like me, so probably PsA) but who refused treatment and must've spent 20-30 years exhausted and in pain... 😟
It was so lovely to read your post. And I can empathise totally I started on MTX in February and it's changed my life. I can walk, garden do some excerise and it's such a nice feeling. Sadly like yourself it took my GP forever to take my symptoms seriously and diagnose my rheumatoid arthritis Thank you for sharing your story it certainly cheered me up.
Flow4, All I can say is keep sharing. That is such good news for you and a real encouragement for people just starting on Mtx. I am smiling for you as I write this.Your family must be delighted too having their Mam back.
Its so nice when the meds work even though it is not 100% when you look back and realise that 6 months ago what you are doing now was impossible then. Please be careful not to overdo it - your muscles will still need to strengthen and you still need to listen to your body. Farm
I'm sorry to hear you've got other things to deal with as well as RA, Crusee. I'm glad steroids are helping you through, and I hope you're sorted soon.
That's fantastic! Glad you've found a drug to help in such a positive way. GPs do get things wrong though lack of knowledge really. It's annoying. You can't get your hip back but you can enjoy life a lot more now! Best wishes to you!
Oh HOW i KNOW THAT FEELING. Great that you are feeling so well. I had similar problems before I was diagnosed I had to fight my G.P.s and went Private in the end to get it sorted. My Rhuemy wasn't too sure that it was RA until I fell and broke my left wrist and right shoulder and went into major flare up. Been on meds for 17 weeks and feel so much better. Keep up the good work.
I'm so happy for you! I pray that I can find what works me to help alleviate the pain, too. I think my doctor wouldn't have ever ran the testing for RA, if I hadn't requested it 😕
@LizaTal. So happy for you. Great to hear a positive story. I just started the shots. I had one shot then had to take the pills again while waiting for approval and mail delivery. I hope you continue to feel well. I love to garden too. Stay healthy!!!
Wonderful news! totally know how you feel after getting treatment that finally works My new treatment Tocilizumab got me not only on my feet these last few weeks but on my cycle! Packed so much into the last 10 days than I have done for almost 2 years.
Well I'm very happy for you Flow! I understand why those who don't have the disease don't get it but everyone here certainly will, you've turned that corner. I'm even more happy that it's subcut MTX that's done it for you as it's been my best med even if my liver does object to higher doses than 17.5mg. It's great that your team will consider biologics if your increase isn't enough because I doubt that will ever be the case for me! That doesn't make me any less happy that your team acknowledge it may still be necessary in the future.
Whether you decide to take the previous lack of action & subsequent hip replacement further is of course yours though I'd back you if you do. Just one thing, do try not to overdo the superwoman thing for too long, I'd hate for it to bite you on the bum & be told you've done just that bit too much! Your family will appreciate the newly rejuvenated you, take care not to undo all that you're achieving
Is it you who's not keen on the handheld device, Matilda, or your manager? Because if it's your manager and you're in the UK, your employer must legally consider it...
That's difficult then... If there is any practical way you think you could use one, then your employer would need to at least consider it as a 'reasonable adjustment' under the Equality Act. I hope you can get something sorted that works for you.
Reading your post has made me feel uplifted and positive for the future. I felt the same as you - couldn't see any future, felt so depressed with all the pain and problems and how it had affected my standard of life.
I started taking Mtx pills about last Oct and experienced sickness, diahorrea, pains in my stomach etc., so many times, had mouth ulcers only once but that was enough. However the pains in my stomach were horrendous, I had the Doc out to my house at one point as I felt so ill (which is not like me at all - if I can make it to the surgery I do). GP suggested I come off Mtx and wrote to my Rheum Consultant, luckily I was due to see him 13th June (7 month appointment) he did suggest I start taking Sulfasazine but I said I would prefer not to take even more pills (all ready taking 6 Paracetamol, 6 Gabapentin, 4 Tramadol, 1 Lansoprazole daily) I suggested Mtx injections so we have agreed to give it a go. My first app for "training" is July 11th so will see how it goes. I honestly think that the stomach problems I had was the amount of pills I had to digest. In the meantime I got a steroid injection in my butt which has helped.
Heading off in a few days, Seenie, and really looking forward to it!
I'm not quite so elated as I was a month or so ago... I've had another flare since, and am quite achy again. I had a steroid shot last Monday which has dealt with some of it - I had a particular patch in my back that was excruciatingly painful when I walked, for instance, and that's gone (phew!) but my hands, wrists and feet are quite sore. Ch A radiographers have confirmed a lot of OA damage there, so I wonder whether I'm noticing the OA pain more now the inflammation is coming under control...?
Still def better than 6-7 months ago (knee bursitis gone; IBS gone; psoriasis flare caused by hydroxy gone; wrists, ankles, knees and hands noticeably 'slimmer', so they *were* inflamed and now aren't...) but I don't feel we've cracked it yet. New rheumy says we'll look at biologics in Sept if mtx isn't clearly working by then... But yes, it's a relief to now be seen by a team who very obviously know their stuff.
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