Is choosing between the side affects of medication or the disease the way it is?

Hi everyone,

I recognise this is something of a "how longs a piece of string" question but I'd be interested to hear of others' (greater) experience.

I was diagnosed with Enteropathic arthritis about a year ago, having been on Azathioprine and intermittent infusions of biologics for ten years for Crohn's disease. At the time of diagnosis I was really incapacitated with pain, fatigue, fever etc but after a few months of steroid shots and Methotrexate, things settled down considerably and I began to feel well again. I always felt under parr for a day following my Mtx shot but it seemed a reasonable price to pay for wellness for the rest of the week.

In the last few weeks, I've begun to feel less well and have difficulty sleeping with pain. It's also beginning to get me down. I feel like my choice is to ask for an increase in Mtx ( I'm only on 15 subcutaneous atm) and then have to deal with increased side effects or to try and manage as I am. I already exercise daily, eat a really healthy diet, limit alcohol, take supplements, meditate, etc, etc, bloody etc.

So good people of NRAS is this a choice you've had to make? Any words of wisdom would be most appreciated.

Many thanks, E.

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33 Replies

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  • Hi Entero

    Sorry to hear you're feeling poorly at the minute. The short answer to your question, in my view, is yes.

    Are you taking anything other than methotrexate? If not, it would seem that there is potentially more that may be done to manage your condition / pain. It may be worth having this discussion / medication review with your rheumy?

    Sorry I'm probably not much help and hopefully someone else will come along that will be more so.

    Take care and good luck with things.

    Marie

  • Thanks Marie, and it's experience from one who's been there not medical expertise I'm after so please don't apologise!

    I do take other medication for Crohn's disease but I've been on it for years without problem - and my Rheumy and Gastro work together really well. They both also work really collaboratively with me but of course being medics are pretty medication oriented so I want to get my own feelings around this clear before I speak to them. Thank you for taking the time to reply x

  • Good that people are working well together- however dependant in a medical model.

    I have honestly found that it is an economy, so to speak. You gain with one and pay with something else. However, I have RA and AS and both proving very difficult to control. As a result, I have had a huge amount of surgery in the past 3 years ( since diagnosis ) and have more to come.

    I guess the best I'm hoping for is to just get to a stage where all I need to manage is the side effects of meds- which hopefully will diminish with time.

    It's a journey, isn't it?!

    Marie

  • Oh, I'm so sorry Marie, sounds like you've had a rotten time of it. I feel like I'm wingeing in comparison. Sending you the warmest of wishes for some comfort my fellow traveller! And yes, no such thing as a free lunch 😏

  • Never a truer word!

    Thank you for your good wishes, much appreciated.

    False economy as it is, I still choose to think of myself as one of the lucky ones'- it could be worse.

    Take care

    Marie

  • Hi,

    Sorry to hear that things aren't so well at the moment - especially as you clearly take 'looking after yourself' seriously (good diet, regular exercise, etc) so - as my RA is definitely stress drive- I am going to ask the question "was there some sort of extra stress around for you about 4-5 weeks ago?" and, if there was, have you looked to express/address the feelings etc that came with it. If that is a load of nonsense for you as stress isn't one of your contributing factors for disease activity levels then yes the increase of MTX may be the way to go - either way a rheumy consultation would be wise.

    I hope things start to get right for you soon.

    All the best

    Ali

  • Ali_H, a girl (?) after my own heart. No, nothing that explains the worsening of symptoms, but then I've found unpredictability/lack of control one of the most challenging aspects of having an AI disease and so these days am trying to get better at going with the ebb and flow - except when I'm not sure if I should be accepting it or doing something more about it, like now.

    I suppose I'm really asking if other people have found that with the right drug their disease is controlled and they have no side effects or whether most have found they've had to strike an imperfect balance.

  • I empathise with your "bloody etc"! Sometimes this disease is a full time job.

    Well for me it's not perfect, but the see-saw of disease versus side effects is relatively stable these days. Part of it has been learning how to minimise side effects, so enteric coated pills and MTX by injection plus loads of water. And organising life and MTX injections so that I get the best fit - so inject Tuesday evening and always plan for an extra hour in bed on Wed.

    I was lucky with my first rheumy who was happy to tinker around with traditional DMARDs, NSAIDs and so on to get the best match for me. And was also happy to give me flexibility so I had a cupboard packed with a range of things that I could use as and when I needed it. Sometimes just knowing I had a pack of Tramadol available was enough to calm me down. But it was well over a year before the see-saw started settling, so things may well change for you too.

    6 years later I'm now in the position of having to think about changing meds as they are not as effective as they were. Increasing the dose of MTX is one option, and my rheumy politely pointed out that it isn't automatic that side effects increase with increase of dose. You could be lucky.

  • Thanks helixhelix, that's really helpful and i suppose it makes sense that an increase might not necessarily lead to more side effects. Every Week I have in my mind your advice to drink lots of water but never quite manage it- this week I definitely will! I have a fantasy that one day I'll give up work and go to live in the back of beyond where I'll come off all medication and cure myself - until then I'm really grateful for all the advice. Many thanks, E x

  • Well I gave up full time work and went to live in the back of beyond, happily munching through my home grown organic veg, daily walks in fairly pure mountain air etc etc. So yes life is hugely better than being a stressed out Londoner, but the cure bit has never quite happened......maybe one day.

  • Good for you! Yes, it's a complex old condition isn't it as tbh most are. I know that everyone has to find their own way of managing things but after 11 years of psychological and physical endeavours It is rather dispiriting when someone claims to have "the" answer. Wishing you well, E x

  • Hi,

    I am currently in a good position on 20mg of MTX a week with 5mg of folic acid once a week. Side effects are practically non-existent and if need be I can tweek my meds down to half does (occasionally zero) for a couple of weeks with no ill effects - this I do (with rheumy knowledge) when there are particular bugs in school (I teach) and thus keep my sick leave down. I rarely need my naproxen and have needed a short course of prednisone twice in the past 3 years (diagnosed Sept 2014).

    All the best

    Ali (short for Alison!)

  • Thanks Alison, I left a reply earlier but for some reason it seems to have disappeared. What I'm taking from this is that I might in consultation with my doctor, play around a bit more with my meds and see what works best for me. Many thanks and take care, E x

  • As has been said here many times before - no two people react the same to RA drugs, & as there is probably nobody else who has exactly the same other conditions as you...... I'd say that piece if string is endless!

    Sorry not to be more helpful!p...but I think the short answer to your question is yes. Most of us have had to juggle drug combinations to get to an acceptable level of pain.

    I'm sure you have thought of asking your Rheumy if you could change the Dmard you are on? That sorts things for some people.

    Hope things settle soon.

  • I'd get in touch with your Rheumatology team and see what they can do to help. Who knows maybe a steroid shot will calm things down without major medication changes.

  • Hello

    At the moment I have chosen a drug free route, simply because the drugs I was taking had no effect on the disease, and made me worse! I don't mibd taking a risky drug, if there are benefits.

    I have terrible gut issues ( I believe caused by drugs), I'm being investigated for issues. My feeling is that if I can fix the gut problem, I will feel better all round. So I've decided to try and do that.

    Interestingly my blood panels were worse on the drug than they are now I'm off them! Since I can't actually drink kefir to heal gut whilst immune suppressed by drugs, I've chosen to go the drug free route for the time being. But, as I said, those drugs were not working, and I wasn't offered an alternative.

    If when I see rheumatologist in December, and having looked at my MRI of spine and pelvis, they decide to try me on another drug, I will certainly consider it.

  • Best of luck with it all. I also went down the gut healing route . It wasn't helpful for me but I'd been gluten and dairy free for 20 years and I think the point from where we make these changes plays a big part in the results. That's not to say any of it is pointless: I believe I'm as well as I am because of all I do. We all just want to be well after all.

  • Hello Nettac,

    I'm gatecrashing this interesting thread with a question about kefir and immune suppression! Why do you say no point in drinking kefir if you're immune suppressed? Is there a contra indication? Just asking as I drink loads of it...

  • Hello Stormyseas

    I think it can be problematic if you drink raw milk kefir (I drink goats).

  • I think the advise if immune suppressed is be careful with yeasts and live bacteria. I didn't touch kefir when in a flare and on steroids.

    Probably best to check with your doc.

  • Thanks Nettac, I see what you mean about raw milk. I use homogenized so guess this is OK, but you've got me wondering now about unpasteurized cheese and raw eggs. Will have to do some research!

  • As with everything it all depends...I'm only on MTX, hydroxy & Sulpha and am generally healthy. So the degree to which I am immune compromised is very small. (the doses we take don't lead to complete immune suppression).

    So I really don't worry about unpasteurised food and have never had a problem. I'm much more concerned about food hygiene, so will back away from salad bars and buffets but happily eat unpasteurised products from reputable sources, home made raw egg mayonnaise and the like. It's an individual choice so if you are frail with multiple health problems then maybe you need to think about it.

  • Thanks, that seems a very sensible approach to me (though I do admit to being somewhat spooked, having just started Rituximab on top of MTX and SFZ). I like friendly bacteria (ferments, cheese, yoghourt etc) and don't want to stop eating them as I think they play an important part of gut - and thus general - health.

  • Rituximab is a biologic, so has more of an immune compromising effect. I don't take it, so no experience, but if I were you I'd ask my rheumy nurse before going overboard on unpasteurised and fermented food.

  • Thanks helixhelix, I will do :(

  • The website where I get my organic goats kefir says not to be used if immune depressed for all kefir, and not just raw milk.

    I'd definitely avoid raw egg and unpasteurized cheeses if on suppressants.

  • Thank you Nettac. That's very interesting about kefir. Could you give me the link - I'd quite like to find out more. (I actually thought the only difference between yoghourt and kefir is that the latter contains yeasts, as well as bacteria.)

    I get your point about raw milk though. I don't drink raw milk but I do eat home-made mayo and unpasteurised cheese.

  • Although my inflammation is down I do not feel my RD has been affected by any drug.

    My current struggle is deciding when enough is enough.

    I do not Benefit but have endless side effects! The sad truth is even if you find a drug that works eventually it stops working. Best advice is find a team you trust and go with the flow.

  • Hi Entero. I had a carefully considered and positive post for you but the blooming thing has vanished! I'm so sorry to hear you are having such a difficult time and I'm afraid the answer to your question is probably "yes". Other people have given wonderful advice, as always, so cannot add anything significant. However, if it helps at all, my experience of MTX has been similar to your own. I started on 15mg and titred up to 25mg. I've not had dreadful side effects, just feel a bit icky and tired the day after. These side effects, such as they are, have not increased with the raised dose. We are all different, thank goodness, and you may be offered a rise in MTX dose or something else entirely. Maybe have a chat with your rheumy team and see what they say? Wishing you better. Hugs

    Jan

  • Thank you Jan. I'm in Greece with my offspring and had a miserable day feeling rough with everyone else frolicking in the sea! Your reply is therefore very welcome. Thank you so much 😊

  • I can't "like" your post 'cos you must feel that you're missing out - again. Let's hope that tomorrow brings a better day. Metaxa (if you're allowed) tastes better the more you drink doesn't it? Hugs

    Jan

  • Not sure what I had Jan, but went down pretty well! Much better energy this morning so fingers crossed for a better day .... x

  • Everything crossed but my eyes Entero. Enjoy

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