What's the point?

I am beginning to wonder what the point is in poisoning my body with crappy medication when I still wake up in pain with my hands every morning, my wrists feel sprained all the time. All the meds are supposed to do is suppress our symptoms not cure , I know that. But my symptoms are no better than when I was diagnosed, so, what's the point in poisoning my body with toxic meds when they dont work?

I thinking of going to an osteopath and trying more natural methods, it can't be any worse,

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  • If meds don't work I see no reason for not trying other alternatives since in fact, like with meds they do work for some. I think being passive and frustrated does not make things better. Good luck😊 Simba

  • Thanks, that's what I was thinking too. I am a positive person and try not to let anything beat me. I find it frustrating though, that what I'm taking isn't working.

  • Have you tried modifying your diet?

  • Yes I have. I've cut out dairy and wheat. I'm eating much healthier than I was before and it's helped me lose weight.

  • Are you seronegative or positive?

  • I'm seropositive

  • Have you checked your thyroid function? Had a compleate panel done? Not just the THS test.

  • Yes, I've had full bloods done, literally a couple of weeks ago.

  • Do you have the results?

  • Yes , my rheumatologist was pleased with the results

  • Hi is it PMR GCA you have. And what is your crp and ESR blood readings. Just my bloodose levels always reflect on pain I have, I know I'm probably a bit obsessed with getting bloods done and and prints outs. I have been taking 2 oz root ginger for over 2 years.

  • I don't understand all the readings. All I know is my Rheumy was very pleased with the results of my blood tests

  • Hi Lyndka ye I see you have RA. I have PMR and GCA. There both autoimmune diseases. I'm on steriods. 3.5 my but feel the ginger helps. And sugar I think it's like poison for our body. I have a lot more pain when I eat cards,

  • Sorry that was carbs

  • I did change my diet but this past week I've had my daughter on holiday with us and we have been eating out more. I'm convinced that's caused me to flare up more

  • Strange you say that cause I had my daughter home of holiday. And we were eating out.eating more carbs. And drinking wine,And I have a lot of pain in arms.

  • This must really be a dilemma since normal body functions need protiens, fats and carbs.☹️.

  • Research on the importance of carbs.

    ncbi.nlm.nih.gov/pubmed/233...

  • I've been very "lucky" in that I was diagnosed quickly and started on Enbrel and Methotrexate immediately. The only painful area that didn't improve is my thumbs, turns out that is osteoarthritis. Could your hand pain be something that your RH mess do not treat?

  • Could be, I need to get it all checked again.

  • Hi yes it's very frightening when the meds make us sicker then the RA. I have decided to try cbd oil in desperation and the way I see it I have nothing to loose I had been on salfasalazine and wondered why I was so sick So I'll let you know how it goes. Hope you find something to help you. 😊

  • Thank you I will xx

  • Hi. I'VE been using CBD now it's legal for 2 months. I had to keep trying different ones (not cheap) but there is loads of advice on Facebook CBD sites and it is DEFINITELY helping a LOTIME. Now faced with withdrawal from hotried meds. .....Keep up with it Zeet x

  • Whereabouts are you living? I am in Australia and it's only very slowly being legalised here and they are talking about epilepsy in children and cancer patients only

  • Hi yes it's so wrong to think people can get such relief yet you can't get it legally Have a look at nimbin hemp embassy I too am Aussie.

  • I have looked it up thanks. Your advice was helpful.

  • What about the protection Dmards supply to your joints?

    If the meds you are presently taking are not helping & making you feel rubbish, why don't you have a word with your Rheumy nurses to see if they can get your rheumatologist to prescribe something different?

    I lost a ton of weight & felt terrible on Leflunomide & my Rheumy altered all my meds & I'm now on a Biologic & feel a lot better.

    If our doctors aren't told when our meds are making us feel ten times worse they can't help.....so have a good chat with your Rheumy nurses....& don't give up until you feel better!

  • Thanks I will. I'm seeing them again in September

  • Lyndak......one thing you need with RA is perseverance & a thick skin.

    I was diagnosed 18 years ago & like most I thought ...see the Rheumy...get the pills...sorted!!

    Little did I know! People still say to me " Have you still got that arthritis?" Like me 18 years ago most people have no idea how serious RA can be.......but mention the C word ( I know I had it) & treatment & sympathy oozes out!

    But don't give up...there is help out there for most of us...but we have to dig it out...it won't come looking for us!

    Good luck with your September appoinment....try writing down all you want to say....most of us get instant amnesia in the doctor's office !

  • Thanks and yes, lol we do forget. I will begin a journal I think

  • I have found that being active with controlling your disease can also be that when something is not working you try to find out why, what may additionally be done. Very often people with RA have underlying conditions and dysfunctions that make RA worse. Thyroid dysfunction is a very common one and that is seldom eexamined thoroughly enough by rheumies. This is why all the questions😊Sorry. Good luck. Simba

  • Thanks for your advice. I appreciate it

  • I agree with your comment.

    My experience and things I have learned along the way is that RA is not just one thing.

    It's often first then underactive thyroid, low vitamin D, low iron,low energy.

    These things need checking every so often.

  • I think all kinds of treatments work better if underlying dysfunctions are first dealt with. The estrogen-progesterone imbalance is also worth checking. There are a lot of things you can do besides waiting for pills to work. Doctors do not enough explore these dysfunctions. Routine THS levels are measured but these tell you very little about your thyroid situation. The whole thyroid panel analysis is too expensive presumably for NHS. Read an article recently where doctors were worried about the fact that not enough attention was given to comorbities in RA patients. Stats tell us that 6m after diagnosis RA patients have a mean of 2 comorbities. Addressing these in time would probably decrease suffering and risks for further complications like CVD where hypothyroidism, even on a subclinical level is seen as a risk factor.

  • I would be careful stopping the meds completely. Recently stopped dmards, I was still in pain whilst on them and they were causing other health issues but once I stopped I had the biggest flare up. Whilst on the dmards the pain was hands/wrists knees ankles but once i stopped it was every single joint in my body. Everything hurt and the fatigue was horrible. I had a steroid injection a few weeks ago which made me feel a lot better as I'm still waiting to start a biologic. (My ra dept is short staffed. I can't see my rheumy till end of Oct!!! 😭) Unfortunately the injection is wearing off now 😔but just really think about whether if the medication is having any affect at all or just suppressing something that would be far worse if you came off it . Xxx jen

  • Thank you. I'm sorry for what you are going through right now. I suppose I'm thinking in this day and age there would be a way for us all to feel better.

  • I hope you don't think that I'm harsh Lynda but whether seropositive or seronegative it's important to ensure we protect our joints, maybe more so when we're seropositive. You're newly diagnosed, only been on the one med 8 weeks or so. It can take anything up to 12 weeks (& above in some instances) for MTX to prove if it's effective for you, this applies to other DMARDs too I'm afraid, they need to build up & you're only 2/3rds in. Who knows, the next few weeks may just turn things round & you could be back here praising it!

    Does your stiffness last through the day or is it limited to mornings? It's one benchmark Rheumy's use, do you have stiffness lasting an hour or more in the morning. This is to determine if the disease is controlled well enough or not though of course in the early months following diagnosis it's to be expected, until the meds start working.

    If RD does anything it teaches us to be patient! I know it must be frustrating not to see immediate results but this should have been explained to you by your Rheumy, that it may take a little while for them to build up or even to find the meds which work best for your particular needs. There's no harm in trying alternative treatments but they're best reserved until the disease has been under control some while.

    Did your Rheumy also prescribe an NSAID or a short course of steroids or just MTX? When I was diagnosed I was prescribed 2 NSAID's & a short course of steroids to tackle the inflammation & pain whilst waiting for my DMARD (hydroxychloroquine) to become effective. It worked well, I could move, walk & basically do mostly all I could do before I had my first symptoms pretty much the following week. If you weren't prescribed either it may well be worth asking your Rheumy nurse if she thinks you need them, you should have been given a helpline number at your diagnostic appointment.

    So, maybe it's that MTX hasn't been given long enough. Have you noticed if your inflammatory levels have been reducing at all? There should be a downward turn now you've had a few monitoring bloods. Oh & MTX isn't particularly suppressive to our immune system, not in the way biologics are & yes, it's a strong med but that's what's RD demands, but not so toxic when it's doing what it should. I've been on it 8 years & no joint replacements, I'm happy with that!

    When you next see your Rheumy, which I think will be in the next month or so, tell him how you're feeling. I'm sure he/she will be able to advise you how you can expect to be feeling, he has your baseline results & can compare them to how you are now, & give you his/her opinion. Please remember too forums like ours tend to frequented mostly by people who are struggling, newly diagnosed like you or asking for advice, they're not representative of the majority who are getting on with their lives, it is possible if you give the meds a chance to to their best.

    Take care, don't worry, hang in there & things will get better, honest. x

  • Ps I didn't think you were harsh at all. What you said was really helpful

  • Yes, I agree. Hang in there. I was very reluctant to take methotrexate but it finally has me walking longer than I used to, some more quality of my days. Sometimes it just takes time for our bodies to respond and yes, they say a change of dose with methotrexate can take up to 2 months for it to hit. It can be a lonely road sometimes getting on top of this. 🙂

  • It certainly is because to every one else I look fine

  • Hi Linda, I was going to say exactly the same to you re he got in in there as several meds take quite a while to kick in and Methotrexate took 13 weeks for me. I had a general steroid inhection and

  • I am just taking MTX and folic acid. I will give it longer, I know it's still early days. Thank you xxxx

  • See how your Rheumy thinks you're doing at your appointment next month. I find if I write a bullet point list it's easier for my Rheumy to go through it & questions are usually answered. This way you get more out of your appointment & it's usually appreciated, unfortunately Rheumy depts are generally busy so it's best if you go prepared.

    It'd do no harm to to some reading up on seropositive RD, if you're doing nothing else! You'll find our own NRAS a good place to start nras.org.uk & this from ARUK has everything within arthritisresearchuk.org/~/m...

    If there's anything else you're bothered about before your appointment you only need to ask, we've all been newly diagnosed so know it's a big learning curve. x

  • Thank you so much xx

  • I take the medication no problem but also do use an osteopath when I've hurt my back, neck etc. I don't see any problem.

  • I'm seeing one on Tuesday , I thought it wouldn't do any harm

  • I remember struggling with the whole idea of having to take any drugs for years, if not forever, let alone these ones. It was a shock coming to terms with the whole idea of suddenly having a permanent illness. Up until then illness was something that you got, went to doctor, took a few pills for a week or so and then life was normal again. So I expected that this would be sort of similar, but maybe a couple of extra weeks.....

    Sadly a chronic disease isn't like that. All in all it took me around a year to find a drug regime that worked for me, and get things under control. So a couple of months is really early days. But it did get sorted, and I can now live pretty normally and largely pain free, and have been like that for over 5 years now. So keep positive.

    Soon after I was diagnosed I also embarked on lifestyle changes in the hope that I could eventually reduce my reliance on drugs. So diet, exercise, destressimg, sleep habits etc, etc. Which has been beneficial as I'm now a healthy, normal weight and calm person with RA....but still on the drugs. I can't drop so much as a dose without flaring. But we are each different and it's always worth trying to improve lifestyle as you can do that alongside the drugs, and then maybe wean off them.

    The other thing I will say is try to understand things like your blood results, and the difference between the drugs you take which suppress symptoms like steroids and the disease modifiers (DMARDs) which do slow the development of the disease. The more you understand the more control you have, and the more effective the discussions will be with your medical team.

  • That's really helpful, thank you. I think part of me is still in denial and thought it would all go away. I will stay positive and love the advice I've been given this morning

  • I have understood that steroids do not slow the progression of the disease. Everywhere you read about dmards ( more scientific contexts) there is never this promise only that they " may slow progression".:(

  • Exactly. That's why I drew the distinction between them and DMARDs. And yes to be precise the DMARDs are only "may" but for a majority they do.

  • This is the frustrating thing with RA meds. There are really no dependable statistics that patients are given on the efficacy of the drug, the mean time of efficacy, the side effects and on longterm effects on differences with seronegative and possitive.

    Found this quite recent study that states the following:" MTX has been confirmed to reduce disease activity and delay or stabilize the development of erosions. However major drawbacks are that patients show great individual variability in response to mtx. Only about 50% show good clinical response and the unpredictable occurence of a broad spectrum of adverse effects.....forces 30% of patients to discontinue treatment.

    jphcs.biomedcentral.com/art...

  • But that's because as yet that information doesn't exist... which I can understand since inflammatory arthritis is such a broad disease type, and people are so variable.

    It's great that researchers are busy'ing away trying to find factors that will predict responses more accurately. So good on them for doing the study as another tiny piece of the jigsaw. But apart from that I find a study of 21 people over 2 months doesn't really tell me much. These days I'm really trying not to cherry pick from research studies, and trying to view things quite broadly rather than detail. Hard for a nit-picker like me, but I might get there eventually.

  • I am sure these stats exist.They are just not available to the public, which I find quite enjoying:(

  • Enjoying? Perhaps your spell check was trying to reduce stress so refused to write annoying?

    Several members of my family are doctors and research scientists and they have looked for me, and not found anything reliable - so I'm not sure it does exist. And even the big pharma companies do have to make information available about drugs on the market...

  • 😂

  • The 50% of mtx efficacy and 30% forced to stop was background information, not part of this study. I imagine they must have come from somewhere 🤔

  • Hi, we may all be at differing places on our RA roller coaster.

    I agree with lots that has been said and suggested.

    I understand and empathise with questioning whether the medication is worth it.

    After 28 years I am still not sure.

    The monthly blood tests are super important I get copies sent to me and I write on 'really bad pain and stiffness' this time or 'doing better' etc.

    I have been on Methotrexate 20mg per week plus sulfasalazine 2 x 500mg morning and for night for 28 years.

    Arava (lefluonomide' was added a few years back but I stopped taking it two years back.

    In 28 years I have taken three courses of Prednisone steroid tablets (over the past 4 years)

    Over the past four years I have had a few guided ultrasound steroid injections into shoulder and fingers as needed. Six more mths ago the bursas in my hips and bottom were so painful, my rheumatologist injected into each hip but I felt uncomfortable asking about the ones at the very bottom of my pelvis (bottom). When I see rheumatologist in a month I may have a couple of injections into the osteoarthritis that has now developed in my thumbs.

    What I have learned is that there is a cost to everything.

    I used to like a glass of wine here and there, white is better than red and a gin and tonic occasionally.

    But the methotrexate affects the liver and I discovered wine made my symptoms worse. As does stress and not getting a good nights sleep and afternoon nap.

    If I overdo it, I pay the price in either fatigue or pain.

    I tried two Biologics but decided against in the end due to side effects. Also the lefluonemide has side effects that I decided against.

    I take Endep 50mg at night that helps with pain, panadol osteo, Tramadol SR 400mg per day and a 5mg Valium if I desperately need a nap and break from the pain.

    I am also on antidepressants.

    If you decide to stop treatment you need to make an informed decision. It also depends on your age and how long you have had it and what responsibilities you have.

    Uncontrolled Rheumatoid Arthritis can lead to major deformity in a few years, also anaemia and inflammation in the body. CRP.

    You can also develop Rheumatoid nodules in your lungs, eyes, heart and arms, legs and fingers.

    You also can get cataracts plus heart problems from the inflammation.

    And the problem is that once the damage is done it can't always be reversed by surgery.

    My partner developed what were thought to be Rheumatoid nodules in both lungs and he had them in arms legs and fingers.

    Then they decided it was actually lung cancer and he would die in a couple of months. So taking him home to die the doctors removed the RA medications and just kept him comfortable.

    In two short years (at 69 now) he has severe irreversible ulnar drift in his left hand and the other is going the same way. He has been on methotrexate for six months, and his ESR has dropped but the

    Nodules continue to grow.

    He now can't shower himself wash his hair or dress himself.

    Research has shown that heart disease is often linked with arthritis the theory is the inflammation but not sure if you have heart disease before or after RA diagnosis.

    I have had heart problems for 25 years so I don't know. Orencia led to severe angina after a few months during infusion after being hospitalised I stopped the Orencia.

    In my experience RA is something you have to try to manage until you die. We each have to decide and discuss with Rheumatologist and General Doctor how best to do that.

  • You make me realise I'm luckier than most. I'm newly diagnosed so all this is fairly new. Thank you for responding

  • You're welcome. Hope it helps. By no means am I an expert but everyone of us has to decide the best we can what to do.

    I reckon this page is great as we are all sharing our experiences.

    Also look it up on google and read up on whatever you can. Trust your doctors and specialists and remember to tell them even small stuff so they can advise you

    Take care

  • Lyndak. Look at reply from Zeet and mine later on. CBD is 100% legal......it isn't "weed" or whatever as the THE which makes you high is removed, just leaving the medicinal benefits.....IT WORKS!!!

  • Yes the TVP is removed. The politicians would never agree to public having fun legally.

    But joking aside. If you have severe pain and take it, you don't get high it just helps with pain.

    In Australia it is only just being legalised and very cautiously.

    I tried the non medical one and I found it caused deep muscle relaxation and I had a good nights sleep. But I didn't want to go down that road.

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