Hi everyone. I'm from the UK and was diagnosed yesterday with inflammatory arthritis in my hands, wrists and elbows. I've had pain, stiffness, swelling, a fever and some serious exhaustion. I've been really lucky and saw a consultant rheumatologist quickly, and I'm 9 days in to a six week course of prednisolone. My hands are already less swollen and my knuckles have reappeared, which is nice! Next step is to get ultrasounds of my hands and get started in the early inflammatory arthritis clinic in the next 8 weeks.
What top tips can you share for someone in my position? What do you wish you had known? My mood is up and down, not helped by the pred, and I don't know where to start with it all. At the moment I'm most bothered with fatigue, being unable to crochet, and struggling to hold my phone/Kindle.
Thank you!
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snotts
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Welcome to the club that no-one wants to join 😁. The Prednisone will no doubt reduce the inflammation but it sounds like you haven't yet been diagnosed with rheumatoid arthritis. It always confuses me when doctors describe conditions differently but maybe your rheumatologist hasn't fully decided if it's rheumatoid arthritis yet. When you attend the clinic next they will probably discuss if the Prednisone has helped and do more bloods to see what your inflammation levels are like. Longer term treatment will be discussed depending on how you are then. In the meantime there's not a great deal you can do but try and be patient. Rest as much as you can but try and keep moving. Prednisone is effective for inflammation but can affect your mood and appetite so generally it's not advised long term. There are lots of different treatments that are effective for some and not others and can be a bit trial and error at first. Hope all goes well and things improve for you.
Thank you Biofreak, patience is so hard! But you're right, and I'm trying to trust that the prednisolone is doing its job. Thanks for replying
Fatigue is my worst symptom and usually a sign your disease is active, I’ve never got the better of fatigue it always wins . So I go with the flow rest watch tv and generally let life pass me by . Heat/ice for the joints rest but also keep moving.contradicting I know. It will get better with medication but boy does it take time .
Welcome to the forum best place for help and support. I couldn’t be without it . X
Stay positive and there are some good medications available. It's a journey and can take time so be patient and take every day as it comes. Don't forget to continue to get enough rest, and don't beat yourself up if you can't do something that today seems important but will actually wait until tomorrow. Pred can give a false sense of wellbeing and is good for the short term but can be addictive and hard to taper off. Anyway I'm sorry you're in the group so to speak but welcome anyway.x
I'll check it out, thank you! I'm trying to let it all sink in and give myself time to read up... I've been vaguely aware of autoimmune stuff because of family members but realise now I know pretty much nothing. It's a big topic and just gonna try and learn a little at a time
Prednisolone is a good crutch for the first few weeks…but do try not to stay on it too long..try to persuade your rheumatologist to get you started on a suitable disease modifying antirheumatic drug as soon as possible….that is if you do have rheumatoid arthritis…..all arthritis is regarded as inflammatory.
You will of course miss the anti inflammatory comfort Pred gives …but the longer you take it…the harder it will be to come off….& taking it long term is not recommended.
You are indeed fortunate to have been able to see a Consultant Rheumatologist so quickly…….let’s hope at your next review you will be prescribed something that will let you ease off the Pred quite soon.
These days, there are so many excellent drugs for the condition I’m sure once you are on a suitable medication regime you will start to feel more comfortable.
I was diagnosed 20+ years ago & have been through quite a few drugs & I can honestly say I can still lead a good life…so be patient & I’m sure you will too.
Thank you for your reply, it's a real comfort to hear that a good life is possible! I've had lots of experience on pred for severe asthma but a six week course is still daunting. I really appreciate you taking the time to write
6 weeks as a holding dose is fine..but if after you taper off you can possibly manage……try to grin & bear it….I had to as it sent me loopy & I had to stop it…never to be prescribed again… so it turned out to be a blessing in disguise.
Hi I was diagnosed early last year and ended up fairly immobile quite quickly
Lots of people have said it already but patience and rest is the key
At the time I was so down and distraught- so I wish I had known that 12 months on I would be mobile and leading a good life again
It took a lot of tweaking of meds when I didn’t feel much better but finally settled on methotrexate and adalimumab and can honestly say I haven’t looked back
I have limitations now but have learned ways to adjust and overcome them
I am afraid it is very difficult at first. I would say not to worry about not being able to do certain things at the moment and to go with the fatigue and rest when you can. Mood is a difficult thing to cope with. I just keep reminding myself that it is temporary. Once you are into your treatment and it has started to work properly I am sure you will feel much better and be able to resume your crochet and other things that you can't do just now.
Thank you Sheila, you're absolutely right, low mood makes everything worse! I'm feeling a little more hopeful today and reading everyone's replies is helping
Ultrasounds were the final step in obtaining biologics for me. Please note that Prednisolone is wonderful for reducing inflammation & pain but my rheumatologist did not want me to take it & thereby hide the symptoms from the scan. When the original treatment of methotrexate obviously wasn't working he gave me a prescription for another round of prednisolone but asked me, if I could manage it, not to start them until after the scans on my hands.He made an urgent referral for ultrasounds & I got the appointment within 3 weeks. I managed to do as he asked and the inflammation was obvious.
I gratefully started the pred the same night!
Please ask your rheumatologist if you should consider this.
I was started on Adalimumab alongside the methotrexate & have never looked back (yet!)
Patience is required, with the correct medication you and your consultant will manage your condition and you will be able to start to do the things that you love. Take care and be kind to yourself.
Hi there, I'm pretty new here too and was diagnosed in July! I also got told I had inflammatory arthritis (now officially rheumatoid arthritis as the blood tests have confirmed) but I was immediately started on DMARDs to help control things long term. I was then also offered a steroid injection as the DMARDs can take a while to kick in.
I felt the same as you in the beginning, frustrated and wanting to be back to normal but I was advised here to take it easy and try to be patient. I'm now about 6 weeks in to treatment and I am finally beginning to feel a little relief, joints are still swollen but pain is reduced and morning stiffness has eased a bit. Even my elbow which had become fixed has started to loosen off.
Definitely still days where it becomes overwhelming but reading the posts here helps as does researching things and being well informed.
Good luck and I hope you'll be feeling a lot better soon.
Welcome to our club - but sorry you've needed to join! It's all a bit scary at first but it sounds like you have been seen by a Rheumatologist relatively quickly and, hopefully, s/he will get you on the right road towards optimum treatment for you. In the meantime, I would echo the advice about patience! Best wishes...and keep us posted as to how you get on.
Hi Fatigue is one of the worst systems l have found RA which l have and is part of Inlamatory Arthritis. The secret to coping with this is not doing too much until you are properly controlled . Start pacing yourself keep a wrtten daily diary for each hour of the day and comment on what you have done and how you feel. You will begin to notice what tires you out most and cut back on it and give yourself resting breaks sit down and relax with a hot or cold drink, don't feel guilty if you can't finish something do it tomorrow, have a proper meal break, get some aids like larger handled cutlery if you find your hands can't hold normal ones. If you you are struggling put it aside after a short bout of doing it or wait until your hand joints feel better and most of all be kind to yourself and if you have friends and or family who want to help let them swallow your pride and you will be surprised at the happiness of other people who are so pleased you have accepted your help. It takes time to adjust to a different way of life but you will get there Good luck
It can be so hard to accept help but you are absolutely right. Thank you for all of these suggestions, I think pacing myself is one to focus on. I like your journal suggestion and will give it a try
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