What’s the worst that can happen if I stop taking my medicine? I dont know if its because I was under quarantine for almost 3 months or what. But Im done. Im tired of taking my medicine. Its alot. Azathioprine, Prednisone, omeprazole, metformin,hydrochlroquin, bactrim, execidrin for pain, hemp for pain, abuterol pump just in case. Im just tired. I used to take them all at one time. But it was too much. Then i spread them out throughout the day. I would forget to take some. Ive gained weight, i have no energy, im depressed. I want to go back to the way i was before like last year. But i seem to be going the opposite. Should i stop taking my medicine to see if i can get up and have some kind of life? What would happen if i stop them? I feel overwhelmed.
Stop taking meds. : What’s the worst that can... - LUPUS UK
Stop taking meds.
No one can advise you to stop taking your medicine but I’m sorry you feel so bad.
Is it possible to ring or email your consultants secretary and tell him/her how ill you feel and ask for a telephone consultation with your consultation to have a medication review?
Before you call write down exactly all your symptoms so you don’t forget anything.
Good luck
You poor thing I know exactly how you feel.
have Lupus and Sjogrens and was put on Methotexrate 9 months ago as nothing worked for Skin Lupus. Chronic skin etc. It was like a miracle after 2 yrs skin stared to clear. BUT the side effects Of medication got worse. by month 8 the fatigue was chronic, brain fog awful, lack of sleep, breathing etc.
Went to see Rheumatologist and Dermatologist and they decided to take me off Methotexrate and see if quality of life improved. I am off Methotexrate for 2 weeks now and it’s like a miracle I have my life back. Fatigue has really improved and brain fog gone it’s like living again. Some side effects but nothing I can’t deal with.
Down side could be skin burning and rash starting again. Have slight symptoms but they have taken bloods already and if it starts they will try Azathioprine ( had reaction to all other meds).
I would Talk to consultant before giving up meds. Good luck
I can see into looking for a counselor or therapy. Or just speaking to my rheumy
I stopped taking mine. I was taking Methotrexate, came off it and Rhumatologist insisted I take Hydroxychloroquine which I had problems with before, re Lupus.
I didn’t heal well and always ill.
Last year back operation, growths in uterus operation, surgeon cut into bowel by accident so emergency reversed colostomy (almost died on day 3), stage 3/4 cancer found, removal of left kidney. Pneumonia four times, pleurisy, two serious chest infections and kidney infection for 5 months. In one year.
So much medication, so I came off them
all, including metformin and alodipine. Stopped all the very strong pain killers for my chronic back pains.
I have Lupus, Rhumatoidarthritis, high blood pressure, diabetes. Asthma, serious back and neck problems plus spinal stenosis, Fibromyalgia to name the worst.
Now I feel like me again.
I take paracetamol for my back pain when I really can’t stand the pain, I have spinal stenosis and will have a major operation soon, I turned down two this year already as my body has gone through enough.
I’m not saying this works for everyone, but I needed a break from the pills.
Totally understand. Reason I want to stop.
I also stopped taking my prednisone some years ago, I thought I was on too high a dose plus I put on a lot of weight which was affecting my diabetes.
I know it’s not the recommended way but I stopped totally. I didn’t feel too well at first but it passes. My weight reduced and I felt better. I now only take it when I have a relapse from Lupus.
For most of them the worst that is likely to happen is your symptoms get worse - you may feel awful but they are probably doing more for the lupus symptoms than you realise.
The metformin is managing the blood sugar levels - but it is well known for making people feel unwell and it isn't the only way to manage blood sugar levels. Are you on it because of the pred? Most of us on the PMRGCAuk forum who are ALL on pred mitigate the need for diabetes medication by a low carb approach to eating and when that doesn't work and medication is required don't accept one that makes us feel ill but ask to try others.
However - please don't stop taking the pred suddenly as that could make you very very ill and even kill you depending on how long you have been on it and at what dose. It suppresses natural production of cortisol which is essential to life and until that returns you would be left suffering from secondary Addison's disease. You avoid that by very slow tapering of the pred dose to allow your body to catch up and take over again and it can take several months.
A very useful item is a dosette box - instead of taking everything in one fell swoop you plan when you will take the tablets over the day. I set my phone alarms to spread mine out and guarantee not to forget them. There are some for daily, weekly, even monthly so you sit down quietly with the tablets and the boxes and fill them so when you need to take them you don't have to think about it and it doesn't intrude into daily life as much. Some pharmacies will even fill them for you if necessary.
I think you need to be as up-front with your medical team as you have been here. It is possible to get to communicate with someone who can review your medication and maybe adjust some of them but certainly explain to you the WHY. Understanding why you need something and knowing what it is doing for you is part of the whole picture.
Metformin, for example, is keeping your blood sugar levels lower. High blood sugar levels in diabetes damages tissues and the long term consequences are quite scary - kidneys and heart being damaged, blood vessels being damaged and blood flow to hands and especially feet reduced so you develop something called "diabetic foot" which can lead to needing amputation of toes, a foot, even more. It damages the retina, you can go blind.
It is a horrible thought I know but when you have a chronic illness that cannot be cured there is no going back - but careful use of medications can make life better than without them. But you have to discuss this with your doctors. And please tell them how you feel - because you are obviously not dealing with this whole very difficult situation and you need some help to do it.
Yeah I’m on Metformin cause I’ve been on Pred for 5 years now. It’s so hard. Most of my doctors are still remote.
I've been on pred for 11 years - and my Hba1c is still absolutely normal. I eat a low carb diet - and I have a load of friends, also on pred, who have got their Hba1c back to normal range from diabetic levels via diet alone. Apart from anything else, it is a way of YOU being able to take control of something about your management and that is a massive boost to your psyche to balance the things you mention in your post that are so depressing.
Hi there stopping meds can cause adverse effects without proper supervision. Have you thought about changing diet. Gluten is a big cause in causing inflammation which no one will tell you. Stopping that you'll start to see changes. I've been gluten free for nearly a year now I've noticed a lot of changes weight for one!! I thought it was the meds causing weight gain turns out the opposite. I'm a size down all in lockdown and no exercise lol. My pain was getting bad constant migraines , stomach pains worse than child labour , rib inflammation causing breathing issues. Touch wood I still get inflammation over body but my migraines have disappeared. When I do have gluten....pizza....my downfall the inflammation is expected the next day that's how you work out what works and what doesn't. Also my son suggested to me to do intermittent fasting 16/8 tht is also helping a lot. It was tough for 2 wks when your body is getting used to the new eating pattern a lot of fatigue I stuck with it and now feel great. You have to do what works for body. Hope you get the help you need to get better and manage your condition. Take care 🙂
Hi
I know how you feel you don’t know if you’re better off them than on them and wonder if you come off them will the lupus do Irreparable damage.
I went to see my rheumatologist yesterday as I was diagnosed in May this year after being hospitalised so had a lot of blood tests etc. Anyway I have a lot of symptoms and was put on hydroxichlorine and NSAIDs which my stomach couldn’t stand so went on 10mg of prednisone.
Nothing much has changed since being on these and he said many of my symptoms are not related to lupus which I think I disagree with as researched ...as you do.
So bottom line he says come off both and I’m trying this week 5mg pred and no others and then next week nothing but my vitamins so I’ll keep a diary and see how it goes . I would speak to a professional to make sure you come off any medication safely and diarise before coming off them so you an compare notes. Good luck x
Good luck ❤️
Dear Jaylowdancer
I’m sorry to hear that you are feeling so low. I too stopped my medication during lockdown as everything I tried had side affects. I decided I would stop all medication for a while approx 4 months. However, what happened to me is that all my previous symptoms have come back full force. Face and body rashes, Stiffness in joints extreme fatigue and just generally feeling so bad. I have now had to agree to going back on steroids and trying something new ( Rituximab infusions). Unfortunately. I know it’s not nice but I have resigned myself to accept in order for me to function on a daily basis I am going to have to take some medication. I hope you feel better soon.
You too. Ty.
Hi Jaylowdancer ,
I'm sorry to hear that you have been feeling so depressed. Have you discussed how you are feeling with your doctor? Are they able to provide any additional support for you during this time?
As some others have said, it can be potentially dangerous to stop your medications. This is especially true for some treatments which have to be withdrawn carefully under medical supervision.
I would recommend that you contact your Specialist Nurse (if you have one) or try to get an appointment with your consultant. Discuss your current treatment with them and how it makes you feel. They may recommend making some changes to make it more manageable for you.
I stopped taking mine for the same reason, but I do have to manage the symptoms and it was hard to start with, but I only eat whole food prepared myself organic where poss. I do have flare-ups but I use natural things to help. I should have cut down gradually, I suspect, but I was so fed-up with being poisoned! x
Do not suddenly stop pred. It will lead to an Addison's crisis which can be fatal or at best will put you in a high dependancey unit. I've seen it happen. And you'll be very lucky to fully recover from that.
I'd speak to your doctor and let them know how you feel. We all get sick of taking so many meds and maybe there are some that you can come off quickly. But pred is not one of them I'm afraid. I wish it was.
A little more than a month ago I had a rheumatologist reduce my meds - to relieve me of some of the psychological / and other side effects. Unfortunately for me - tonight I've made the executive decision to go back on the original doses as I'm so fatigued I can't function - in pain - and think my kidneys, and perhaps even my brain might be suffering a bit.
It's not perfect - but I'll be so relieved to feel well again.
The issue you've bought up is such an important one that many of us have to grapple with to some extent.
I take most of my medications in two blocks - all at night: one lot - on going to sleep - and the second - four hours before I wake. This means that at least the second part of the day I manage a clear and happier psychological state.
Recently one specialist commented that the way I take my meds- is to mix - the uppers with the downers - to keep myself near normal. It's really looking at every med side effect one at a time to see clearly how it effects you and then experiment - or change that med to a better alternative:
eg. I seem to be one of the minority mutants who cant even take even tiny doses of hydroxy as it sends me into a disconnected depressive state. I can however tollerate the more full on immunosupressants. Once I went off hydroxy my depression lifted.
A lot of people take anti depressants to counterbalance the depressive side effects of the meds with some success. I've been lucky enough to be allowed to take alprazolam ( Xanax ) which helps keeps the misery at bay. It's a taboo drug - but because I dont do well on anti depressants and have a nasty illness load - psychiatrists tend to show some mercy and allow it for me.
Don't give up hope of getting Doctors to come up with - an alternative mix immunosupressants - or some kind of happy drug to give you quality of life.
If you've only been on these drugs for a short while - don't despair - you're brain/ system does adjust to a great extent over time.
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