Hello everyone, I haven’t posted for awhile. I’ve been on treatment for nearly 8 months now I am on methotrexate 25 mg injections. What started of in my hands is now in my hips shoulder/neck and knees . I’m just wondering has anyone else found it’s gotten much worse since diagnosis and starting treatment?
My rheumy has mentioned about starting me on biologics/ jak inhibitors.
It’s a waiting game at the minute. X
Hi, I’m 18 months into it and also on methotrexate 25 mg injections. While I’m about 90% ok I’m not perfect but only really minor. If you’re still poorly after 8 months I would speak to your Rheumy, you should be much better than you were at the start. Best wishes.
I'm in the same place as you (18 months, 25mg MTX 90%) - but wondering if 'this is as good as it gets' or to push for improvements...
It’s a difficult decision, I was supposed to be having a consultation with the Rheumy this month but I’ve now got a telephone consultation with a nurse. My Rheumy did suggest I add sulfasalazine to the mix (when I saw her in January) at this point if I hadn’t improved but given the current situation I’m unsure if it’s wise. I don’t want to upset what’s currently reasonably okay.
I was diagnosed 4 years ago and on 15 mg methotrexate still flaring after 12 months so tried Hydroxychloroqine but I’m allergic. Things settled down still with intermittent flaring. Last February it became uncontrollable it was every where walking was a big problem as were hands and elbows. Several steroid injections and allergy to sulfasalazine I started etanercept Biologic in January and methotrexate tweak things have improved still not great hoping things will continue to improve. I think RA is a disease that keeps changing in intensity. Some people go into remission I would love to be one of those. That’s my aim.
Yes, been posting. Mine started in big joints and in the space of about a week I've developed typical symptoms, swollen fingers, 2 seem to be permanently swollen and deformed. Feet are bad too and ankles. For the first time I've had extreme fatigue and struggled to get back to the car after walking the dog today. I'm shocked by how quickly it's developed. Had the croaky voice thing again yesterday...ugh.
It’s quite frightening when your out and the fatigue hits. Struggling to get back and then having to drive with fatigue. I don’t drive when I’m fatigued anymore it’s just too dangerous to be on the road. I would never forgive myself if I caused an accident.
Do you know, the very same thought occurred to me. It's only 5 minutes down a road in the middle of nowhere but I had a similar feeling after doing the Aldi shop recently. I was all up for it and after 15 minutes of pushing the trolley my motor went flat and I had to get to the check out and get home. It's 45 minute drive and at one point I did wonder if i would manage it. Thankfully I perked up a bit but it did worry me. Also, I've noticed that even if my wrists are OK. handling the steering wheel makes them ache.
Mine is a similar story. Was even thinking about getting a automatic but then lockdown happened. I can’t afford a new car but some days the only way I would be able to get to work . These spates of fatigue that come for a short but disabling spell I call my flash flares
Flash flares! To go with my Flash fiction...
thankfully the wrist/driving thing doesn't happen too much. Sometimes I get a sudden shooting pain in the tips of my fingers when I press down. It happened a few months ago before my diagnosis just on a tricky junction and I let go of the wheel.😯
Automatic sounds like a good idea.
I have an automatic, and honestly do not know what I’d do without it now.
Mind you I don’t drive nearly as much as I used to do x
Hi sorry to hear you still not well after 8 months
I was diagnosed early March after general stiffness upper body and pain in hands
Since then my disease has progressed rapidly and I have just found out I need total knee replacement and cannot walk without crutches
I do have a very supportive Rheumaltolgy team and they are working hard to get me sorted
I started on oral methotrexate and have just switched to sub cut. I had to stop taking hydroxychloroquine due to allergy
My consultant is also starting me on a biologic and his PA rang me on Friday to say should be starting over next couple of weeks
I think it is an incredibly complex disease and as you say a waiting game.
I am Hopeful things will improve and hopefully they will for you too.
Maybe you need to get in touch and clarify with your team about starting biologic
I was diagnosed in March too and was extremely cavalier about it. Eating my words now...😑
Good luck with starting your biologics.
I did get in touch with my rheumy nurse everything just very slow, hopefully soon.
I hope all goes well for you
Hi piwacket sorry you became allergic to hydroxi . Could I ask what were the symptoms of the allergy. I have just started as mxt not working well and I am stuck abroad(no flights back home for at least a month) rheumy told me to take hydroxi if this situation arose. Thanks.
Hi sorry you stuck - hope it is somewhere nice
I developed extreme light sensitivity and ended up with severe sunburn even though it wasn’t sunny - I always use factor 50 if it is. I now cover up as well in rainy old England
I think it is quite unusual reaction though.
But it started off as itchy rash on legs and eventually blistered- so I think first indication for you ,if you take, would be an itchy rash before it develops further
Hope this helpful
well, you've given MTX a fair go which is important but after 8 months it sounds as though your consultant is right to reconsider your treatment. I'm the same as Dspooky - not where I want to be but much better... Good luck and hope you can get sorted soon.
Oh dear. It does seem to be one of those diseases where many people only have mild symptoms for life, others are not so lucky.
I was also diagnosed 4 years ago. I was on mtx, sulfa, 10mg pred. Couldn't function without the pred. It pushed my BP up sky high too and that's never really come down.
18 months ago, I moved to biologics and they changed my world. Stopped the pred and never needed it since. Also reduced mtx over this lockdown period and stopped sulfa too. Feel better than I ever have done ironically.
Pre biologics, I was a mess. Yes, it did get worse even with mtx. Until I was hospitalized for pain relief for my shoulder as it was so acute.
Things will get better. It's just a matter of finding the right mix for you. The brutal part is trying each drug for a minimum of three months so it's a long process.
Good luck!
It’s indeed a long road, I was also on sulfasalazine and hydroxychloroquine , I suffered allergic reactions to both.
The steroid injections did nothing for me,
I am definitely hopeful things will improve though.
I too am allergic to sulfasalazine and Hydroxychloroqine pink plum. Started a Biologic in January there is are lot of improvement but still need a little more to function more regularly
I've never had the injections - I took 10mg a day tablet form
Rheumy doesn’t seem keen on giving me the tablets for sone reason. I’m glad you got much needed relief from the biologics x
I insisted hahaha. I couldn't function at all otherwise. Couldn't walk, couldn't hold anything, couldn't wash or dress or anything. It was miserable
Is it a silly question, what is RD?
rheumatic or rheumatoid 'disease' rather than 'arthritis' because it is totally misleading and inaccurate. 'arthritis' is only one symptom of auto immune rheumatoid disease (of which there are many) ad it conjures up ideas of old age and over use of joints (osteoarthritis) while although debilitating presents typically in old age and is 'mechanical' not systemic unlike RD and is a totally different disorder.
sounds like I swallowed a medical dictionary!!🤣
Thanks Brychni
I don’t mean to depress you....but acceptance & patience is the No 1 requisite with R.A...plus a whole lot of optimism.
Listen to your doctors......they have seen many different reactions to medication....and they deal with each patient as their experience tells them.
Sadly we all just have to wait for whichever drug regime suits us....it’s no good thinkIng that because Drug A was a wonder drug for patient X that it will work for you.
So try to look forward rather than counting the days.
I’m 20+ years diagnosed & doing OK....it can be a long frustrating journey, but most of us get there in the end.....so you will too!
It can happen. They have to try mtx suplhas first. Hope you get a new treatment soon. I started jak inhibitor in April and it's helping. Plus so convenient after infusions and injections as they are tablets!
I’m looking forward to starting new meds that’s for sure 😊
Yes I was on methotrexate for 12 months felt a bit better but still not right so eventually I was put on benepali and I am lot better now so keep pestering them don’t give up telling them how you feel all the best stay safe x
Thank you I will x
I have been getting a lot of pain in my shoulders and down my arm to my hands. It's been going on for the past 8weeks. I am also getting a lot of back pain especially if I drive anywhere over an hour. My knee is also so painful as soon as I start driving! I may have to ring up the rumey nurse as am in so much pain and don't get me started on the fatigue!
Take care everyone x
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