A little back history.. diagnosed just over 4 1/2 years. Started methotrexate tablets no problem odd digestive and tiredness problems.
September 2017 joints swelling and stiff right ankle worst started limping. Tried hydroxychloroquine ( allergic) had physio no limping and discharged.
February 2018 all hell broke loose. All joints stiff swollen feet so painful again right ankle effected worst. Limping no stride Achilles and tendons effected . Several steroid injections gave very little easy and had permanent fatigue. Settled slightly but flares more intense and disabling major flare caused anaphylactic.
July 2019 tried sulfasalazine ( allergic) September started MTX injections. Still active disease Das score 5.4 and walking a real problem stairs impossible.
January 2020 started entanercept as well as MTX worked well to begin with but still having problems . March was a terrible month slept around the clock and still mobility problems new symptoms burning feet as well. MTX break 6weeks then restarted. Eventually in July it was felt entanercept wasn’t working and causing the burning feet. Another steroid injection in September to tied me over until I start baricitnib. DAS score 10.8.
I’m still waiting to start baricitnib and haven’t had any entanercept in 4 weeks. In that time I have slowly improved although I have had extreme sweats night and day ( shocking sweats almost like a withdrawal from drink or drugs) then this week got better each day less sweats less mobility problems no swelling. I can see my knuckles for the first time in 3 years ( they are damaged).
Woke up after an amazing sweat free sleep, this morning no RA symptoms at all no limping walked the dog unaided good stride and I feel alive.
Now my question. What do I do? Ring clinic and not start baricitnib or get the medication and see how I go and only take it if RA decides to bite me again.
I know we are not medics but would be interested in your thoughts.
Over the years I have experienced these feelings at times of being 'normal' again sometimes lasting a day but as the years have gone by for me those times are less and less...perhaps half an hour if that and nothing of late. I think I mentioned it in a post once. It's like the me I was before RD was saying I'm still here and I would get quite upset once that moment passed. I'm not saying this is what you are experiencing nor have the experience of the meds you have taken, but understand as others have mentioned perhaps to start the new meds and in light of a potential lock down on the horizons I would not wish for you to be left possibly without anything. Savour these precious moments of feeling ok and long may they continue too. Take care xx
I think I agree with the others above I’m afraid, that’s why this darn disease is so difficult to come to terms with, it still gives us the odd day of feeling like we don’t have it, then BANG it’s back! Wouldn’t it be lovely to feel like that most days, not just very occasionally - perhaps Baricitinib might do that for you? I do get the question you are asking yourself though, I think we all suffer from ‘medication fatigue’ from time to time and you have had bad experiences with a number of meds to date so this is bound to make you think twice. Xx
I’m pleased you’re having a better time at the moment but I agree with the others for all the reasons they give. Do the drugs!! X
Tricky one, and to be honest I'm not sure.
As mentioned to you I think you need to have the drug at home with you. We all know RA creeps up on you when you think you might have sorted meds or pain!
Enjoy the moment though too (without overdoing it) at this point I am coughing to remind myself.
in reply to
Too late .. 2 Mile fast paced walk 3 loads of washing . Made a lemon curd layer cake.. made the lemon curd myself. Hoovered the house now cleaning windows. Got 2.1/2 years to catch up on. 😁 even had the energy for a row with hubby 2nd one this week .. man is in shock 😂😂
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Have this image of hubby rugby tackling you to the sofa to stop you now
I'm thrilled that you are feeling so good at the moment even if it presents a dilemma. If we were in 'normal' times I'd be tempted to leave baricitinib alone until it was obviously necessary. However, as times are anything but 'normal' and we could face massive difficulties in accessing treatment in the near future I think I'd take the meds.
I would not take it and see how long you feel good for. You can always add a drug. But sometimes living without the side effects is a game changer. Being able to move again like you are will help you in more ways than drugs.
The decision at the end of the day is yours and I would be tempted by your last but one paragraph, but also know that most of what has been said on here is right as the condition does like to lull you into a false sense of security. Good luck with it.
If you making a decision based on a single day of feeling better you're mad. Look at one day compared to all the rest. Only you alone can make the decision but regardless of how you think you feel for just one day I'd be more cautious and take the opportunity to minimise any further damage.
If it was just one day I would agree but since I stopped 4 weeks ago it has been a slow improvement apart from the sweats. This week each day has got better. I’ve cleared cupboards started exercising. Less pain and stiffness swelling reduced then today gone completely. I will monitor and I am aware it can rear it’s ugly head again. I don’t want to take an expensive drug for the sake of it. It could get taken out of my hands anyway with lockdown as I’m still waiting for the hospital pharmacy to release prescription.
Then its simple if you can't get it you can't take it ? My RA does come and go a bit never completely though as its Palindromic but its still there really all the time but the swelling waxes and wanes whilst my joints never get hot but I had Pulmonary Embolisms and the risk of clots with uncontrolled RA is there. I would not take the risk of clots and joint damage but it might be easier as am seropositive so its easier to treat. I've kept on exercising as it makes me feel better anyway especially during the crisis and now I just hope the rain stops long enough to pot up my winter pansies for the garden.
Whatever you are doing, get the meds but don't take it until or unless you need to. You might just be between flares or you could be feeling the benefit of just MTX. That is what I would do.... and enjoy the relief and freedom while you can.
Thank you . I’m just on the mtx now but I think I will do what you suggested.. if I get it now lockdown is happening again. I don’t think steroids will be prescribed while Covid is peaking.
Yes I said the same to a nurse. Last lockdown all Rheumy clinic medics were redeployed. A nurse in training would take messages and pass on to a weekly review with doctors replacing them who could or would not make a decision.. . This a big city hospital. They are still catching up which is why I have been waiting over 3 months to start Baricitinib. Hope they learnt their lessons after the last lockdown.
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