Giving up

[jilly60]

Hi I'm just wondering if anyone has given up with medication as it makes things worse not better and tries to manage symptoms in other ways thanks

[Chantev]

Hi Jilly

I gave up Nifedipine a long time ago as the side effects were making my joints swell. So I took up exercise to improve my circulation and change my diet to one that manages arthritis. I am still on a Hydrochloroquine based tablet and thyroxin and have been able to symptoms free for a while now...but as you are aware we are all individuals and our degree of lupus can vary from one to another. Some 24 years ago I was diagnosed with SLE, Reynaud and Hashimoto. I exercise everyday and try to eat healthily, I lead a normal life without being riddled with the misery that lupus can inflict. I hope this will help in your quest. Best wishes

[Hidden]

I was diagnosed with RA and treated for three years for this but had serious allergies to four drugs so am now unmedicated. My RA is very Lupus like and it seems to be in remission, although I struggle more with neurological symptoms now than joint related ones. I self manage by avoiding dairy, taking Methyl B12. I'm also prescribed AdCalD3, Levothyroixine (T4) plus Lirothyronine (T3) and Losartan 50mg. I was gluten free for five years but recently was put on the gluten challenge and found that reintroducing gluten made no difference to me. I walk the dogs for a few miles everyday and keep as active as possible plus my diet is very wholesome and I avoid all refined foods and caffeine. I manage quite well for the most part and am defintely better off avoiding medications where possible because I'm so intolerent/ allergic.

[jilly60 in reply to Hidden]

Thankyou for your reply it's like banging your head against a brick wall sometimes with all the things this thing throws at us

[Bronagh2015]

Hi Jilly60, I'm sorry you don't feel your meds are working at the minute, but Lupus is a difficult condition to treat and it can take a while to find the correct mix of meds for each individual. I can say for certain without my meds I would have left this earth long long ago! I'm so thankful we have the Health Service we have and here in Northern Ireland we get free prescriptions so my huge amount of tablets, inhalers etc don't cost me a penny. Please get in touch with your Rheumatology nurse or Consultant and explain your concerns, and do not suddenly stop any meds as this can be dangerous. Best of luck. Bronagh

[Paul_Howard Partner LUPUS UK]

Hi jilly60 ,

I'm sorry to hear that you feel your current medication is making you feel worse. Have you discussed this with your consultant to see whether a different dose or treatment might be a better option for you?

It is definitely worth investigating any lifestyle changes you could make to help you manage your lupus symptoms, but I would encourage you not to stop taking your medication without discussing it with your consultant and doing it under guidance and careful observation. Despite the nasty side effects, the lupus treatments are often working to protect you from damage and if you stop them it can be dangerous. Some of the more serious effects of lupus (such as kidney involvement) are usually not noticeable until the later stages unless regular testing is done.

[Barnclown]

Good question, jilly. I've given up lots of meds over the decades when it was clear they weren't actually helping me or I was reacting badly to them ...the one thing I don't give up is conscientious lifestyle management, but even this has to be proven effective in my case or I don't stick it out longer (I usually give a regime at least 3 months to prove it helps). Whatever, I always discuss these things with my medics before stopping

I could give you loads of examples of meds I've stopped:

prescription oral NSAIDs & analgesic optiates & that just made me feel groggy & numb without actually minimising the pain they were prescribed to treat and meanwhile were increasing my rate of loss of bone density and making my chronic gastritis & oesophagitis worse

Topical NSAIDs I was prescribed to treat so-called arthritis in a finger tip...14 years later a brilliant ortho surgeon finally recognised it was a rare malignant tumour of the connective tissue & amputated promptly

PPIs I'd been taking daily for 6 years when the news surfaced we should never be on them long term, so gps & consultants changed prescribing protocols

HRT in various forms I should never have been prescribed because I'd already OD'd on oestrogen: I was exposed daily for months in utero to the artificial oestrogen DES which is the main thing that tipped me over into infant onset lupus...topical hrt gave me horrific urticaria flares all over my bod eeek

Buccastem (Stemetil) which was making my vertigo worse instead of better

trimethoprin, norofloxin, bactroban & other antibiotics that I'd grown resistant to but my Drs just couldn't see this at first

Meptazinol which made me feel sick as a dog and did nothing to clear an infection because the oral surgeon hadn't realise the actual primary site was chronic osteomyelitis in my jawbone itself...they thought the infection was just related to a tooth root

Nifedipine which made my Dysautonomia flare severely

I could go on & on...but I won't

What I must say, again, is that I agree whole heartedly with paul & the others: communication is key to resolving these probs with specific meds...and if your medics are reluctant to engage constructively with you in this subject, then ask them why this is....I've asked Drs this question in a totally calm & reasonable even friendly 😆 way, and when they failed to respond in a fair and convincing way, I've managed to pretty much stay relaxed while pausing as if I'm 🤔 🙂 considering their opinions carefully, and then calmly asking them whether the best thing for us both would be for me to seek another opinion because I feel we seem to be having a hard time understanding each other's views. Fortunately I haven't had to resort to this often, but when I have it's worked like a dream

OOOPS...I replied that I "could" give you loads of examples...and by gum: I actually did 😮😉! Apologies for going on at such length, but, at 62, after a lifetime of trying loads of meds out + experimenting with alternative therapies & lifestyle management a go go, this subject means a lot to me for obvious reasons

Thanks for starting a great discussion...I hope it's helping you

🍀🍀🍀🍀 coco

[jilly60 in reply to Barnclown]

Thanku very much for your reply I've also tried all sorts of medication which doesn't actually make symptoms any better at all but the side effects are mostly worse than the symptoms lol

[Natura]

I am treating naturally, but I have low end, had positive ANA, and went negative after using digestive enzymes. I take b12, i watch my vit d as i have scarred kidneys. I take a lot of other supplements, but everyone has different symptoms. You could talk to a nutrtionist to help you. They can help tremendously! Good luck!

[Freckle1000]

I definitely wouldn't recommend what I did without having full and total backup from your consultant to monitor your health.

I'm extremely drug sensitive but I have to take a highish dose of Micophenolate for SLE Kidney problems. Unfortunately I found the effect that drug had my mind utterly devastating. My consultant/nephrologist tried me on other medications but they had other unacceptable side effects. He was adamant that Mico was the superior drug for me to use - so I asked him to trial me on a single dose at night so I could sleep through the symptoms. I asked him this knowing full well I was potentially risking my kidney health. (I had also waited to ask this at the point where my kidneys where three quarters stabilized from a nasty flare)

He was not a happy camper. To say he was cranky about it would be an understatement - but 'eventually' - and with the help of an eloquent medical advocate - he was willing to work along with me as my psychological/perceptual quality of life had been obliterated by the drug.

In order to take this risk he upped the strength of the medication - so I essentially take a higher dose than before, but I do sleep through the side effects. He continues to ask me to take one dose in the morning and one at night, but I've managed to meet him half way and take one dose on going to bed and another when I habitually wake up halfway during the night.

The risk we took thankfully paid off and now my kidney function has mostly stabilized.

Having said this, I should state that I was utterly without quality of life and another medication option couldn't be found for me - Essentially I was willing to risk my life to try this.

I've just been lucky that it payed off.

[Freckle1000]

p.s Coco's assertiveness tip is a very good one ! (re: Asking a Doctor why he is unwilling to work with you constructively) re: to work out a medication regime/balance to give you a better quality of life

[jilly60 in reply to Freckle1000]

Thanku I think I will have to re think I have a habit of just taking what they say and go away feeling a bit stupid for asking

[Freckle1000]

Unfortunately a lot of Doctors have a bad habit of making Lupus patients feel that way.

There are so many different immuno - suppressants and so many different ways of taking them. Finding a right balance is sometimes one very slow cautious step after another. This is a hard slog in itself, but battling the personalities of Doctors on such a journey has been the hardest part for me. (I've been at it for 34 years)

Its a lot easier if you can find a Doctor with good listening and communication skills who will leave you feeling helped & better about yourself and the situation you're in - not worse.

As you've probably noticed - a lot of doctors are not very skilled in this particular area - so much of the time its a case of getting the obnoxious ones to do their job properly.

They are getting payed and have a duty of care to you to make sure you have the best quality of life possible.

So please, never feel stupid for asking them to do their job. Making you feel stupid is one of their tricky skills to stop a conversation they don't want to have, or make a consultation shorter for themselves.

Sorry, I'm probably going to be very patronizing and tell you what you already know but -

If you are able, try and take note of how each drug effects you and write down the problems you have with them. If this isn't possible - this might be the first issue your Doctor needs to 'work along side with you'. Finding safe ways to figure out how each different drug is effecting you ?

Please note:

Doctors are simple creatures at heart and are easily bamboozled by the complexity of Lupus patients so I've only just recently learnt to: -

Try and keep things as simple and precise as possible. eg Present them with 4-5 of most important side effects of a drug instead of the actual 15 - 20

Don't use terms that can be interpreted as vague eg. 'it makes me feel funny' Be as specific and descriptive as possible. But again - be careful not to overload these poor fragile creatures.

Pre - prepare your actual description of side effects in advance. (I write myself very simple notes with color highlights - sometimes even using cartoons to help me focus on what I need to get across)

Do not let them side track you with other issues. This is their favorite trick. If they try and side track you - state quite clearly that you didn't come here to discuss that, you are here today for this one reason alone.

A consultation is a horribly short thing and Doctors always seem to be in a hurry. As soon as you're out the door they are on to the next person so unfortunately we have to communicate a complex array of symptoms simply, quickly and abruptly.

Its not an easy skill to learn. It takes a lot of pre planning to prioritize what you want to get across first - and then how you're going to gain enough control in the conversation to get the response you want. Sometimes just allowing a pause in the conversation - or even telling them 'I need a bit of time to consider how to respond to what you just said - just hold on a minute' - to allow yourself time to think of your next response is important.

Don't let them grind you down.

xox