[Flashman]

Hi folks,

I don't "officially" know what's wrong with me at present, but I do know that when it gets really bad, I can get some relief from ibuprofen. Now, I see some sites where it's mentioned as a "treatment" for lupus due to it's NSAI effect... so I was wondering if anyone has used it medium to long term, and what the side effects and consequences of long term use are. Also whether there are specific procedures for taking it that minimise long term effects. You know, all the stuff that they cover their asses with by printing "or as directed by a doctor" and "see doctor if symptoms persist" on the bottles.

The way things happen now, is I wait until joint pains, aches, headaches or general malaise become intolerable, then take it for 2 or 3 days until I feel a bit better, maybe get a couple of days relief, then "suck it up" for however many days it takes to get intolerable again. This is because of my and my wife's abiding suspicion that "It can't be good for you" to continually take an OTC medicine.

So, since it's the only NSAID that is freely available to me, and appears to relieve whatever is wrong with me, and might prolong periods between severe attacks if I have got lupus , if taken regularly, I figure I may as well take it regularly to see if it can help me feel better for longer.... if of course it's safe with longer term use.

I know this is no substitute for getting correct and tailored treatment from a professional, but with the speed things work here, and the hit/miss rate with doctors, I might be a long while getting to that point, so that brings me to...

If I'm set on trying to take it medium/long term, how do I do it, and what do I watch for?

I realize that it can irritate the stomach, and I'm not particularly susceptible to it, not as some people are, by three or four days of taking it though I can feel a bit "refluxy". So I would assume that I need to set a rule like "always take with meals". Then I'm wondering if lower dosages are effective longer term, dosage directions on OTC bottles are basically 400mg every 4 hours, dentist has given me prescriptions for 600mg before and I said I've got 200mg ones in the cupboard, shall I just take 3? and he agreed it was the same... anyway, so higher amounts might get prescribed on occasion. I'm wondering if when I've got over the typical 3 days of taking the full OTC dose, whether it would be effective at all to switch to maybe 3 200mg capsules a day for maintaining the anti inflammatory effect or whether that wouldn't work. So I'm curious as to what dose anyone with lupus has actually been prescribed for advil or ibuprofen. i.e. What does a doctor direct when he prescribes ibuprofen as an anti inflammatory for long term use (rather than as a short term analgesic) ?


thanks,

Flashman

 

[Katharine]

Hi again,

NSAIDS are certainly NOT an alternative to proper treatment. If you do have lupus or another auto-immune disease you need "disease modifying" medication which you can certainly not get OTC.

In addition ibuprofen is not usually recommended for use in lupus patients as it can have a bad effect on kidneys which can already be affected by the disease. My rheumy won't prescribe ibuprofen at all for me (even though I found one type very effective when a little extra help was needed). Some people do use it but obviously that has to be agreed by the doc.

We have to remember that no OTC meds will replace proper treatment and that lupus is potentially very serious and needs proper treatment. The first baseline treatment for lupus is a med that is far less dangerous than many OTC meds.

I do agree that letting inflammation gain a hold is definitely not a good idea and that illustrates all the more the need for a good (and supportive GP) as well as that rheumy referral.

Katharine

 

[Katharine]

P.S. Also please remember that we can only tell you what we have learned by personal experience and can certainly not ever replace medical advice. Your specific questions about dosage etc. would be specific to you as an individual based on your medical history and many other factors. You need those docs onboard!

 

[greenhaggis]

Welcome to the site Flashman!

Katharine has given you some good advice!

However, normally NSAIDS will take up to 2 weeks of continuous use before full effect kicks in and helps with the inflammation and easing pain. Nsaids are primarily for inflammation...hoping that that gets under control pain should subside. Have you thought of using a painkiller for pain such as Paracetamol alongside the Nsaid.

400mg per dose x 4 in 24 hours is the maximum dose according to instructions enclosed with the med! 600mg or more is only ever prescribed by someone in the medical profession...and then only under special circumstances.

You definately should not be taking more than advised! If you have had 600mg in the past I assume that was a particular dental issue and not anything to do with now!

If you have ongoing issues with pain and inflammation you have two choices 1) to seek GP/proffessional help and advice for the immediate problem and for assessment of long term help 2)or carry on down the route of treating something longterm without knowing the causes and what damage you may/or may not doing.

There are many more effective NSAIDs that a medical proffessional can prescribe and then if they are not enough, then other meds can be introduced (again by a medical proffesional).


Please remember that any responses you get on this site by Moderators or members is only offered as advice, you have to make your own informed decisions guided only by the medical proffession.

 

[JAGGS]

hi Flashman

I take 800mg Brufen 3 times a day & Solpadol two 4 times a day, both prescribed by my rhuemy and have been taking this dosage daily since Nov 08 - If I don't taken them or late taking them I suffer terribly. It did take a while to acheive the full benefit.

I have been lucky with all my meds regarding side affects, I think everyone reacts differently and every doc treats differently.

When I once ran out of Brufen over a weekend I phoned NHS direct and asked if I could take 2 x 400 otc Ibrufen the Dr said NO and wrote an emergency prescription for me.

I would agree that you should seek medical advice if you are thinking of taking any otc medication long term.

Regards

 

[BigSis]

Hi Flashman
Sympathies to you......I feel I've been where you are now:worried:
Before I was properly treated and while seeing a GP who didn't recognize my fairly textbook symptoms of Lupus, I was popping high doses of Ibuprofen just to get through the day. Persistant low grade fevers, pleuritic and joint pains constant sore throats were definately eased by it. Though of course not the fatigue and stuff.
Trouble is it doesn't help control the disease so I was getting very much worse.
What you need (as I did,) was to swap GP's and an urgent rheumy appointment.
Now since being treated properly I will only use Ibuprofen short term like a day or two. Its not really recommended for lupies for the reasons Katharine describes plus a risk of aseptic (non-infective) meningitis. There are many other NSAIDS more suitable.

Good luck to you
If only lupus researchers received a pound for every lupie who was made to feel like a hypochondriac.......a cure would surely be found