Silly question perhaps but

[Philip]

what are the risks of not taking any medication because of the side effects and what are the benefits of taking it?

Sort of pro`s and con`s

Told you it is a silly one.but thank you.

Philip

[Hidden]

not so daft really .. lots of the medication brings side effects some inconvenient and some more serious.. but the considered opinion if l left unchecked especially if your disease is very active.. irreversible joint damage could be sustained...

some people chose the no medication option it is their choice and in spite of my job im not here to judge on this issue.. at the end of the day patients have a choice.. I can only guide. never force people its unethical and not nice.. very few people chose the no medication route..

the medical opinion/ fact is that disease progression can be slowed/ stopped( remission) there is however no cure at this moment in time. I personally have experinced side effects of bad nature with two of the older dmards which are absolutely fine and safe for most people... read my blog.. the truth the whole truth blog.....

Alison

[Hidden]

Hi Philip, not a silly question but it does depend on what the side effects are, and how bad they are. Sometimes the treatment can far outway the side effects so therfore are worth putting up with, if they are not to serious of course.

I myself am in a that situation at the moment with Rituximab, having been on it for nearly three years have suddenly developed a side effect of "facial flushing" this however is worth putting up with at the moment as the Rituximab works so well for me, but I do have to see how it goes. On the other hand I've been on MTX for almost ten years and started to have a white low blood cell

count and this is something that can't be ignored and so I've had to stop my MTX for the time being.

There is also an allergic reaction which is completely different and treatment generally as to be stopped, it did in my situation as the reaction was life threatening!

Take care

Mandy xx

[Gina_K]

Philip,

That is probably the most difficult question to answer . I have a friend who is bi polar and chose not to take his meds and ended up being arrested! I know its different but without his meds which have horrible side effects he goes into mania, great for him, as he is on a fabulous high and full of ideas and energy but not so great for every one else. I know its not the same, but if you chose not to accept treatment you also have to accept that your disease may progress unneccesarily, and the long term impact on yourself and those around you may be harsh. Philip, the meds are scary, but surely you can discuss this with your doctor and find the ones that cause you the least side effects and in time hopefully the side effects will lessen and the benfit become apparent. My aunt years ago quit her methotrexate and I have to be honest her condition did deteriorate leading to many joint replacements, an mrsa. Another Aunt continued her metho, and while she does have some joint damage mainly hands, nodules etc, she continues to live independantly in her 70s.

The choice is yours.

Talk to your healthcare team and tell them about your concerns, they are bound to offer you choices.

xxx Gina.

[Gina_K]

Ps. Also agree with Alison & Mandy, depends on side effect, whether to stop or not. If it is a perceived side effect, you can persist. However, your Consultant will advise stopping if blood tests show adversity. Good Luck!

[Philip]

I am so much medication for Diabetes, fibromyalgia and ME, COPD, Dibetic nuropathy and all that together with any thing else would definately not go to well at home I put a strain on the family as it is , so more bad side effects wouldnt do.

Thank you so much for your replies and your continued support,

Philip

[Hidden]

Hi Phil

Its a gamble really but I think if you have been diagnosed with RA its a high risk strategy to leave it because it almost inevitably leads to long term joint damage and disability which will also put a strain on our loved ones and carers.

I hate the meds I take and still feel upset and angry at times but try to balance this with the fact life is not fair and at least Im lucky enough to avoid ( hopefully)

some of the suffering/disability/surgery others have endured who have not been able to benefit from DMARDS in the past.

Take care

Fi x

[Sheila_G]

I agree entirely with Sparkle. Have you ever sat down with medics and discussed the problems of taking so many drugs at once. Sometimes one drug negates another. I know that your gp should be aware of this but they don't always check. I am speaking from experience so make sure that each doc or consultant knows about other drugs you take.

[Victoria-NRAS Partner Moderator NRAS]

Dear Philip

This is not a silly question at all, and in fact I would say that we probably get more queries on the NRAS helpline from people who are nervous about taking the medication than about anything else. I don’t think anyone finds it easy to be told that they will be starting on long-term and often life-long medication, and it doesn’t help that the information given on the drugs concentrates on the potential side-effects, and effectively reads like a list of what can go wrong!

With any medication there are always potential side-effects, but this has to be weighed up against what the disease itself can do to the body when the condition goes untreated. For any drug to be approved for use, the more common side-effects are always going to be the milder ones, and in some cases, side-effects such as nausea, headaches, stomach problems etc will either pass with time or can be relieved by other medication. Obviously the greater concern is with the more severe side-effects (for example liver damage). Your rheumatology team will monitor you for some of these side-effects and it is important that you let them know if you think that you are having a side-effect to your medication as they will hopefully be able to get this under control, and if necessary can start you on a different medication. There are many more medications available to treat RA today than there were just 10 years ago, making it likely that if you react to one medication or if it doesn’t work for you, there are more options that you can try.

Unfortunately, the DMARDs (disease modifying anti-rheumatic drugs) that are usually used to treat rheumatoid arthritis are the only thing that has been proven to slow down the progression of the disease, offering not only relief from the everyday symptoms of the illness but also helping to reduce the risk of complications later down the line, such as joint damage or damage to internal organs.

If anyone is concerned about specific side-effects to a particular medication, or wants to talk in more detail about the pros and cons of the medication we are more than happy to talk this through with people on the helpline, which is available Mon-Fri 9.30-4.30 on 0800 298 7650. I would also urge you to discuss any concerns about taking the medication with your rheumatology team.

I hope this helps

Vicky Backhurst

NRAS Helpline

[Philip]

Hi Everyone, thank you all so very much for your answers,

I will definately talk to my GP as soon as I can, I dont have a Rheumatology team as yet so Im a little lost in this maze, I am hurting very much in my ankles, feet, hands, wrists hips and knees and a bumpsy daisy, lol sorry, I probably will use the number thank you,

It really seems to be , take the meds I think, that you are saying and you most definately are right in what you say.

The ocupational therapist came out today and brought me some goodies, new crutches with molded grips and also 2 walking sticks with molded grips, shoe laces the dont need tying also knife fork and spoon set, the other people who do the wheel chairs are going to contact me this next week or so to get me a wheel chair on a permanant basis, I think im lucky there lol but he said you will need them maybe in the future and rather struggle getting them then lol, he got them now, so some things are moving.

Thanks again

Philp