Newly diagnosed and scared of the triple treatment!

I've been diagnosed with RA, already had OA for 7 years. I'm 58, female, married and a farmer.

I dare not start the triple treatment, I'm going to speak to a GP in 10 days time and will ask his opinion. The thought of killing off my immune system is anathema to me, it is one of the 2 main defences we have. I wouldn't allow anyone to remove all my skin!

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  • Hello MrsSW,

    You are like me. When I was diagnosed 2015, started to do research on the effect of RA meds and alternative treatments like diets and supplements and on research done on the underlying conditions and deficiencies found in RA patients. There are a lot of ways to support normal immunefunction and decrease the inflammatory reaction in your body. RA can be so very different in different individuals that I am quite sure that the one-size-fits all treatment is not the best for everyone. Finding out and understanding your individual situation is really not easy since help on a holistic understanding of your illness is seldom offered from rheumies. There is a lot of information on this forum about the effect of diets. Especially Kai's abundent postings have a lot of very useful information. I would be happy to share what I have learned with you😊 Good luck.xx Simba

  • Your not stopping your immune system completely only suppressing one part of it,the part that is in overdrive and causing you pain without helping you.Do discuss any questions with your clinic.

  • Mtx is supressing the proliferation of all fast growing cells. The worry is especially the cells in your gut that regulate 70% of your immune function. The same goes for the hormone production in your ovaries and the prolferation of cells in the liver. The effect of the meds on thyroid function and hormonal balance are also important to follow up and examine before starting meds. There is a number of ways you can decrease the adverse effect of the meds. Meds and alternative treatments can be combined, there is no reason why you should need to choose one or the other extreeme. Your individual situation should be the determining factor but in order to be able to choose you do need a lot of information. Someone elses experiences tell you only a fraction of the story.

  • It is a hard choice, especially if you like many of us have been healthy and never taken anything more than an aspirin.

    There are some who have a type of RA that does respond well to lifestyle changes, but this is not the majority. For the rest of us drugs are the only way to prevent long term damage and live a normal pain free life. I tried diets and they did diddly-squat for my RA. I do stick to a fairly plant based diet, and exercise, as I believe it is good for my overall health even if it does nothing to control the RA. So always worth giving it a go.

    I have been on triple therapy for over 6 years now. I have no side effects, a full head of hair and and a perfectly normal immune system. I am living normally now whereas I was nearly bed-ridden. I rarely get so much as a snifle and despite working outdoors a lot with many cuts and scrapes I've not had anything get infected. Methotrexate does have a small effect on the immune system at the low doses we take, but since RA causes the immune system to be overactive I reckon overall it makes little difference if you are otherwise in reasonable health. Certainly doesn't to me. I would fight anyone who tried to take the drugs away from me now!

  • I really appreciate your replies, you have all given me pause for thought! So now I'll be doing more research and plenty of thinking. Thank you very much.

  • Everyone is different but the meds have not caused me issues with farming - the disease has when meds are not working and have had many spells when I am unable to do anything outside because the disease is not under control. My current meds - a biologic Abatacept and a DMARD hydroxychloroquine work well but my white cell count and neutrophil are very low but have caused no issues and helped lambing Jan - March with no problems infection wise. Farm

  • I'm on triple therapy and I'm fine 🤑🙃

  • It's not a question of the NHS trying to hurt you by damping down the immune system more like saving you from pain, and damage to the parts of your body affected by RA. I'm in remission due to medication and am pleased to be able to lead a normal life without medication its no energy, pain, swelling and generally a debilitating lifestyle. I'm sure its a shock but are you willing to take the chance of ending up wheelchair bound if it can be avoided. It may not be the case but then again and RA does not just affect the joints etc in my case it was blood. I'm grateful to be alive thanks to the NHS and prompt treatment, in the end what have you got to loose, you can always stop medications if you feel they do you know good. Or try something else. Having RA is a condition that for most is something we live with and it does not control us, but we control it.

  • Hiya MrsSW & welcome. I also have RD & OA, diagnosed with both 9 years ago. Like many who'd only ever needed basic medication it's a big leap to multiple meds per day isn't it? You may be taking a number of meds already for your OA but they're not 'heavy' meds. Did your Rheumy discuss your prognosis at all? TEAR, (Treatment of Early Aggressive Rheumatoid Arthritis) with triple therapy had been used successfully in large studies & since then in general Rheumatology so from that it would seem he is thinking you could have a more severe or aggressive form in selecting your regime. Low disease activity has been seen to be achieved within 6 months for some on triple therapy, that may or may not be the case for you but you should be assured he won't have selected the meds he has without good reason, he after all is the one who has your interests at heart.

    I'm not sure your GP will be of great help discussing your regime, unless he has a special interest in Rheumatology. Specialist meds are prescribed by secondary carers, Specialists, so whilst your GP may be aware of the DMARDs you've been prescribed it'll likely be only basic knowledge. I would think it would be more informative if you were to ask your questions & advice of your Rheumy, the initial prescriber or your nurse, you may have been or will be allocated one of the team. I completely understand your concerns, at diagnosis everything's such a blur you don't have chance to catch your breath never mind take in what your medication & treatment is, probably why you've come away thinking is this what I want?!

    It's often a misconception that we're going to be immunosuppressed which it is true to a point but DMARDs aren't overly suppressive, not as much so as anti-TNF's/Biologics. Our overactive immune system certainly needs dampening down though, this is what the DMARDs will do but they won't as you fear be killing off your immune system. We do need to be aware of some nasties though but good hand hygiene is mostly all you should need. Normal colds can often last longer & on some meds we should report if we get chest infections but we're not needing to hide ourselves away.

    Eating well, avoiding processed foods & joint friendly exercise can certainly help, you'll know that with having OA, but if you do have a more aggressive form of RD it's less likely you'll halt progression with a more natural approach. You could ask your Rheumy if he thinks there are any supplements you could benefit from too or indeed be tested for, we can tend to be low on some. Some we can find in food so that may be worth checking out where necessary. The only one mine recommends for me is Omega 3 fish oil though she's prescribed a Calcium/Vitamin D which I take daily as I'm borderline for osteoporosis though thankfully my T score isn't increasing & I attribute that to also including dairy in my diet.

    I think that's plenty from me, I hope it's not information overload! I hope you enjoy being here, we try to be a positive bunch though we can have a grump every now & again as the disease determines! Try to be aware that here it isn't representative of the majority of people with RD & associated diseases. Like you we have newly diagnosed people asking questions & looking for support or those generally getting on well but having an iffy time, there are even some of us who choose to be here! Oh, one more thing.... its better to keep to reputable websites if you feel you'd like to understand the disease better. If you haven't already maybe having a look through the NRAS website would be helpful nras.org.uk or Arthritis Research UK arthritisresearchuk.org or Arthritis Care arthritiscare.org.uk. The second two have lots of info on OA too if that's helpful at all. 😊

  • Hi,

    Apart from all the other support and sound advice my immediate thought was, as a farmer's daughter myself, ask to be tested for latent TB just in case before staring your meds. Please take into account that you are trying to dampen down an overactive system not stripping back a regular system. I've been on MTX for over 2 years now and am still teaching special needs full time. I don't get every cold etc going and when there is a bug going around I tinker my meds down a little just to make sure.

    Some dietary changes may help - I find potatoes and tomatoes don't really agree with me so I avoid them and I also keep my gluten down as it makes me feel heavy. Look at vitamin levels and ask to have your vitD, iron and magnesium levels checked before starting your meds.

    All the best

    Ali

  • Hi

    Yes it is all horrible and scary when you first start out. The condition is scary and the drugs to treat it can seem scary too. It's really a case of weighing up the pros and cons. I was really bad when things were uncontrolled, I could hardly move and the pain was awful. I was fit before it all kicked off, but I lost my strength and fitness and I'm sure it did my heart no good either, to be so inactive. I was desperate for relief and would have swallowed anything they gave me that might help! I am on triple therapy now,it's currently working well, and I feel generally well. I have regained a lot of lost muscle and fitness now I am able to be active again.

    When I was worrying about a lowered immune system my GP told me our immune system is only slightly reduced with the drugs. I'm more careful with hand hygiene etc but haven't had any more illness or infection than anyone else, and I work with children!

    Hope you manage to make the right decision for yourself

  • But what is the alternative? I've taken Methotrexate for over 30 years (dx 46 years ago), not everyone has side effects. Left untreated, RA will destroy your joints.

  • Please listen to your rheumatology team....they really know about RA ...a. GP has usually had a few months on a Rheumy team during his initial training & unless he has a particular interest inRA will probably not have enough knowledge to discuss in depth treatments.

    I am 18 years down the line & have been lucky enough to only have had three Rehumatology Consultants during that time. I am now on Biologics, having been on various Dmards both successfully & not. At the beginning I asked my GP for advice & she quite honestly said that she had no experience of the drug I was questioning.....so ever after I have relied on my rheumies.....& I lead as normal a life now as friends of my age.

    Do consider the damage RA can cause if allowed to progress untreated.

  • I would agree with the above posts. I was diagnosed in Feb 2016 with RA and OA and have been on methotrexate and hydrochloriquine since then, with steroids till last Oct. I don't think anyone really likes taking powerful drugs but when you think of the alternatives in terms of joint damage etc ..........I think there is a story on the NRAS website by someone who did not take methotrexate for many years and now wishes she had as her joints are so badly damaged. Of course it is our choice but for me they have been 'miracle' drugs so far - and (although I am quite careful with hygiene etc) I can honestly say I have had fewer infections etc in the last year than I have ever had!

  • I sometimes wonder whether autoimmune diseases exist partly because at one point in our evolution an over-zealous immune system conferred some benefits. I suppose that evolution doesn't care if a person's hobbling around in pain as long as they can avoid typhoid etc. long enough to breed! This is irrelevant to your post really, except that I started thinking what a complex subject the immune system is!

    And it is a complex subject. I think the term 'over active' is a big simplification. And as others have said, the drugs don't actually knock out the immune system. But, over active or whatever, our 'wonky' immune systems are not good for us as a whole, chronic inflammation can affect many body systems and is not likely to make farming any easier, that's for sure! I've been on Methotrexate for the last 5 years and Humira for 3 years. I've had one cold. I don't 'avoid germs' and am not even sure that's doable. I think your working life may actually be a huge plus, being active, getting fresh air, eating well .... all these things help and may, I rather suspect, also help to regulate the immune system alongside the drugs.

  • I'm interested in this idea as I live in a village that way back was a place of the 'ague' or most likely malaria caused by undrained marshes. It would appear and I know a biological archaeologist that there may be a genetic link which inferred an immunity to those born locally yet which led to the idea that a wife marrying into the community had a short life expectancy. It may be that this in turn now predisposes people locally to another serious medical condition. So yes, it may well be that an inherited condition such as autoimmune disease is down to survival of the fittest in the distant past

  • Thank you again, for all your advice and ideas. I am so glad that I decided to post on this forum, I'm also humbled by the time and effort you have taken to lend me your support. I'm definitely less scared of the drugs since I've read your posts!

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