Break in Treatment

[Mistydawn]

Hi All

A few months ago, my previous treatment for RD, Abatacept was stopped and I was to start Upadicitinib. However, due to this coinciding with a shingles and covid vaccines, I didn't actually start the new medication. I then went away for four weeks and didn't want to start a new medication whilst I was overseas. This means I have been without medication for about two and half/three months.

My query is that I would like to take a 'medication' holiday to see how I get on although my consultant back in October 2021 was keen for me not to take a break. Have any of you taken a 'medication' holiday? How did you broach your medics about your decision? How did you get on with the break from medication?

Thank you in advance for your anticipated help.

Mistydawn x

[Neonkittie17]

Hi there. I think you could end up in a lot of pain and possibly get joint damage as a result of uncontrolled rheumatoid arthritis if you don’t continue with any RA medication. In almost everyone I’d say the RA does return after some months and you could feel awful in general as it’s a systemic condition affecting your entire body.

Are you worried about side affects of RA medication? I’d ask to speak to your rheumy and explain why you have had to stop taking it due to the vaccines and shingles and I hope they can reassure you on anything you may be worried about. When we feel fine and are mobile and we feel no pain it’s hard to believe that RA will return if we stop our meds. It does return. It’s understandable why you stopped your med due to the vaccines and shingles too and being away not a good time to start a new med, but even if you feel good and not in pain at the present time, I do feel you will find that RA will creep back in. I hope you can talk with your rheumy or nurse soon.

[Mistydawn in reply to Neonkittie17]

Thank you Neonkittie for your quick response. I totally agree with you re: symptoms returning and yes, I am concerned about the side effects of the RA meds. I have an appointment with my rheumy in June so will discuss this with him then (or sooner with the specialist nurse).

[Neonkittie17 in reply to Mistydawn]

You’re welcome. I would try speak to your specialist nurse ASAP. Whatever you say they’ll have heard similar and you’ll feel better for discussing things with them. They won’t be annoyed at you and will want what’s best for you. Good luck, Mistydawn. 💗

[Mistydawn in reply to Neonkittie17]

Gosh, thanks for reminding me the medics “will have heard similar before”. That’s put my mind at rest re: approaching them x

[Neonkittie17 in reply to Mistydawn]

Yes they’ve usually heard it all and are very understanding, 💗

[Amnesiac3637]

I agree with Neonkittie17. I’ve had the odd ‘holiday’ from various medications through surgery etc. and have felt fine on just my 7.5 mgs of prednisolone daily for a while but am aware that RA just doesn’t let up 😢Some of the drugs we take stay in the system for some time and continue to work so you may feel ok and then get felled later on! It’s something I’ve always, over the past 33 years, dreamt of - ditching the whole blooming lot of chemicals we ingest daily but I probably wouldn’t be functioning at all if I had.

The only thing to hope for is a cure and that’s not coming down the tracks in the near future so if you want to keep going keep taking the pills…….

[Mistydawn in reply to Amnesiac3637]

Wow! Have you had RD for 33 years Amnesiac? Take care

[Amnesiac3637 in reply to Mistydawn]

I have indeed - far too long and a long and winding road……..🥴😍. Take care of yourself too.

[Mistydawn in reply to Amnesiac3637]

I’m so sorry to hear this. You must have had a fair few changes in medication!

My concern is the side effects of these medications mean more pills to counteract them and then it becomes a viscous circle. Sadly, I saw my late father take one pill after another as he battled with the side effects of the original medication. I’m pretty sure the concoction of pills he was on towards the end of his life killed him in the end x

[Madmusiclover in reply to Mistydawn]

I’m sorry to read that. Did he have RA? We are closely monitored with our drugs as you know and apart from folic acid with metho I’m not aware of additional drugs taken to counteract side effects in rheumatology; though we might need more than one drug to get control of the disease.

[Mistydawn in reply to Madmusiclover]

Thank you Madmusilover. Dad had triple bypass heart surgery and the drugs post surgery led to side effects which were then controlled by additional drugs.

I'm about to start Upadicitinib and understand side effects include raised blood pressure and raised cholesterol levels. When I queried this (the males on my fathers side of the family all suffered/suffer from heart/high cholesterol level related illnesses) I was told if these side effects occurred, they could be controlled via medication(s) which then led me to think about my late fathers' situation.

[Madmusiclover in reply to Mistydawn]

Of course that’s understandable. I hope you get something you are comfortable with that controls your RA

[Neonkittie17 in reply to Amnesiac3637]

Yes, I have felt exactly the same like saying a big bog off to the chemicals too! 🤨 I know too what the consequences would be though. 😑 Mostly they’ve served me well but a couple haven’t been so good. (What is odd is that I never dream I have RA. I’m always running or doing something very athletic. Wishful I guess! 😄)

[allanah]

I have unvoluntarily had this happen to me and I'm miserable, in agony and finding things difficult. I had an op, and the recovery from it. Covid, chest infection , asthma next so 6 months... no treatment. I CANNOT wait till my drip tomorrow and I will be devasted if there is a problem with me getting it !

[Mistydawn in reply to allanah]

Oh no Allanah, so sorry to hear how poorly you have been! Fingers crossed for tomorrow x

[allanah in reply to Mistydawn]

Thanks Misty , it's been rubbish, hope you don't get this, I was doing so well, it brings back all the bad memories xxx

[Mistydawn in reply to allanah]

I can imagine. I really don’t want to go where I was for over a year when I was first diagnosed! Take care xx

[allanah in reply to Mistydawn]

Thank you lovely , its been so tough but covid , 2 failed surgeries have put me back but I and my docs hope eventually getting tcz will help, we didnt have enough here so its rationed (tcz) ....... before I got it monthly but also I have been too ill to get it x

[Neonkittie17 in reply to allanah]

I have every faith in your determination to get better. 💗xx

[allanah in reply to Neonkittie17]

I will try all medicinal suggestions x

[Neonkittie17 in reply to allanah]

I know you will.

[Gnarli]

I have had a few problems recently including pneumonia and reducing my MTX from 20mg to 17.5. After about eight weeks of the reduced dose I am not feeling very well. The residual effects of the MTX seem to be wearing off leaving me with rampant fatigue, tendinitis (probably), full body aches and the beginning of painful joints. It's like it was at the beginning of this foul disease six years ago. I'll be contacting the helpline tomorrow begging for some sort of relief. Talk to your rheumy team please and see what they say

[Caza in reply to Gnarli]

Sorry to hear you’ve been so poorly. Wish you better x

[Gnarli in reply to Caza]

Thank you x

[sunnyweek in reply to Gnarli]

Sorry to hear this, wishing you well x

[Mistydawn in reply to Gnarli]

Take care x

[AgedCrone]

If your doctor thinks it’s a bad idea …if you think he/she a good doctor….I,’d believe it.If you look back on here…you won’t find many people who have succeeded in taking a successful little break…..but quite a few who have wished they hadn’t tried.

Keep taking the medicine…20+ years on…….I’m really glad I did.

[sunnyweek]

I too agree with all NK says. I can well understand why you would like to take a medication break a little bit longer after your vaccines and holiday. I would though suggest you discuss it with your team and be guided by them.I know when we are well controlled we can think we've beaten it. I took a 'holiday' when methotrexate attacked my lungs and they put me just on high dose prednisolone to recover. When I tapered the steroids after about 16 months, the RA came back with a vengeance.

I needed daily help at home until a new biologic and new Dmards kicked in, as I couldn't go back on the previous drugs. I've had RA over 30 years and believe me it hasn't gone away.

You could be luckier and I hope you are but I'd advise you to be guided by the experts.

[Neonkittie17 in reply to sunnyweek]

I think we’ve all hoped early on with our RA that if we stopped the meds we’d be fine and RA wouldn’t come back but ... it comes back and if you try go without meds for a long time you are usually much harder to treat. x

[allanah]

Exhausted i hope you can get sorted x

[Mistydawn]

Thank you all so very much for sharing your experience and putting my mind somewhat at ease. I'm going to 'bite the bullet' and start on Upadicitinib tomorrow as the morning stiffness in the joints of my hands is beginning to creep in and see how I get on.

Wishing you all the very best on your own journeys with this disease xx

[Amnesiac3637 in reply to Mistydawn]

Very good luck on your new drug and hope you don’t have any problems. I’ve been on Baricitinib for three years which is the same type of JAK inhibitor, had no side effects at all and it’s worked really well. Am about to change to Tocilizumab as B has stopped being so effective but haven’t regretted being on it at all and it made life much more bearable. X

[Mistydawn in reply to Amnesiac3637]

Thank you! That’s reassuring re: Baricinib. Good luck with Tocilizumab. x

[stbernhard]

Hi, I have had several periods of enforced RA medication breaks due to cancer treatment in the last twenty months. On every occasion I came out of remission and ended up with swollen, painful joints and terrible fatigue. I am left with some permanent damage even though none of the breaks was longer than 13 weeks. I will make it back to remission, but its going to be a lot harder than the first time round.When you don't take your medication, your body can do strange things and long lasting damage can be done. Every drug has side effects and we all experience them differently. My view is that the benefit of the drugs will always outweigh the side effects and I am willing to accept them gladly.

Please talk to your consultant, or get a second opinion from a health professional. In the end the decision is yours, but they are the ones who can help you. I hope you find an acceptable solution.

[Mistydawn in reply to stbernhard]

Thank you so much for your experience of being a ‘medication break’. So sorry to hear about your issues. I guess I have been medication free for about 13 weeks too now. Hope you feel better soon. Take care

[helixhelix]

I had an involuntary break from drugs in February due to an evil viral gastroenteritis. Only 5 weeks but by the end of 5 weeks I had all sorts of problems and then when I restarted my Enbrel no longer worked!! So have had three lots of pred to get and keep things calm again. Start on my new drug on Saturday, which will be about 12 weeks. I can’t wait!!

[Mistydawn]

Oh no helixhelix, so sorry to hear your experience! 🤞your new drug works quickly. I have decided to start on my new medication tomorrow too.