AIBU to decide on my own medication doses?

[ConfessionsOfTheSteroidQueen]

I’ve name changed for this as nobody in my real life thinks this is a good idea, so I told them I wouldn’t do it but I have.

I have severe Rheumatoid Arthritis and associated lung disease. I married my husband and had my children when I was happy and healthy but I’m now totally disabled by it. After a very bad episode, I ended up in hospital and on a long term dose of steroids. This has remained for many months. I am bloated, depressed and an insomniac due to the steroids.

An opportunity has come up to try a stronger drug that is safer for my lungs and gives me a fighting chance of being able to walk and have a life. I have to meet the criteria which, in theory, I would reach but I am worried the steroids will mask the inflammation and I’ll be ineligible. The assessment for this new drug is next month and I don’t have much time. If I get on this drug and it works, I may be able to come off steroids.

I thought, fuck it, I can’t wait for my life any longer. I’ve rapidly started dropping my steroid dose. I have a massive headache but perhaps it’s coincidental. I’m dropping the dose faster than I normally have done but not at a dangerous rate.

Just needed to tell someone as I’m such an honest person. AIBU and a twat? I close my eyes and imagine being on this new drug; being healthier, taking my kids to the park, being off steroids, getting back into work and maybe even studying.

I feel stupid. I always thought I was educated about my disease and about my body. I knew it was foolish to mess around with my steroids, I didn’t realise the risk.

I will see my GP tomorrow. I probably need to talk about my depression too. It’s probably a combination of factors - the condition itself, adjusting to a change in lifestyle, missing being able to work, gained so much weight etc etc.

Thank you for kicking some sense into me

Having a disease does not make you an expert in treating its emergencies

I've had to tell professionals how to treat my emergencies for the last 20 years. It's a shame every a&e department doesn't take it seriously because I've experienced the "you look ok" attitude.

@MitziK

For some reason, they seem to prefer oral steroids. I’ve had a couple of IM steroids over the years. If I can eventually get off the prednisolone, I can ask if IM can be used if I have a flare up.

To be honest, I don’t know exactly what’s affecting my mood but the insomnia from the prednisolone is making me stir crazy. I wouldn’t be surprised if the low mood was a combination of factors. I shall have a good think about it.

"The assessment for this new drug is next month and I don’t have much time. If I get on this drug and it works, I may be able to come off steroids."

So you're being assessed to see if you're suitable for the treatment, and they're expecting your results to show your levels with steroid treatment... If you don't meet the criteria because you have chos to stop taking your steroids, then they can rightfully claim that you are "non compliant" with your current treatment regime, and ban you from the new treatment based on that fact...

*chosen stupid phone...

Any good doctor assessing you for criteria for a new drug, should know the effect that your current medication is having, side effects etc and should assess you with that in mind.

There's a reason doctors train for years and years - i don't think you should change your medication.

I don't have an answer to this, OP, but just want to send you a (((hug))). It's clearly a nightmare situation for you, and I hope you can get onto the new drug and that it changes things for you

Hope it all gets better for you OP, I also have RA and know what a nightmare the criteria for treatment can can be. Sending positive thoughts to you.

Prednisolone caused me a lot of problems, including adrenal problems and diabetes.

Definitely speak to your GP and speak to them about your mental health as well, mention your keenness to try the new drug and that's why you've been tapering because you're scared you'll be turned down. I agree with a PP those doing tests for the trial will be aware of the meds you are on and this may make them question suitability - best to be honest. Then move forward. It won't necessarily make you unsuitable, but it will show honesty.

Spoken to my specialist nurse and been sent for bloods. She understood my position but felt I’ve tapered too quickly. Thank you.

@ConfessionsOfTheSteroidQueen

I hope you get your new drug!! I have severe RA too and have just started on a biologic drug.

As with you, I had to meet a specific criteria before I was considered for it. Mine was done on disease score, (made up of CRP, number of joints inflamed, etc).

It's taken 3 years of having no life and constant pain, but I've now got it. Fingers crossed it will work!! Means I take a tonne of pills and give 2 injections to myself, but it'll be worth it I hope.

We shouldn't play with medication doses, but I am not going to say you are BU. I know what this disease is like and does to you and you will to anything to get something like a life back.

I really wish you so much luck with this!!

@ConfessionsOfTheSteroidQueen that's fantastic news! Thanks for the update!

I definitely agree with your specialist nurse that you tapered too quickly, but you've got a month to get yourself as strong as you can be to ensure that you get the new drug!

Good luck! I have been on a drug since it was in the trial stages, so a long time, and it's the best decision I ever made!

Her understanding is good as is your honesty.
Hoping you get the drug and it helps!