So I appreciate no-one will advise on staying unmedicated with RA.. but just in such a loss as how to move forward.
I was diagnosed last September, sero positive. At the time I was moderate disease activity, RF 78, anti-CCP >500. With RA symptoms in about 7 joints (my knees quite badly), it was progressing pretty quickly and I felt very ill at the time.
Since then I’ve been mostly on methotrexate, first oral, then injunction. I was taken off MTX in Jan as had severe MH symptoms (suicidal thoughts, completely despondent, PTSD triggers were high - I have history of significant trauma). I then had 7 weeks no medication and felt great, joint pain in most joints had started to subside and had more energy. But symptoms did resume about 7 weeks in. Briefly on sulfasalazine, but didn’t agree with me, so put on MTX injection.
I still intermittently have very black days after my injection.. completely irrational thoughts, suicidal.. albeit it passes. 3 weeks ago I had a particularly bad episode post injection. My 15yo daughter was aware of my mental state and the guilt I feel that she has to see that and what it does to her and the rest of my family. since then I have taken my self off my medication (can’t get hold of Rheumy team but due to see Consultant on 4 Sep). Consultant does know history from before re mental health so it’s not new.
This w/e I know I should probably resume my MTX,, but the last 3 weeks I’ve felt so much better, in my head. Joint pain has not returned other than my knees, which are constant (I have osteo in both knees also). And my right hand / forefinger flares up and down.
So I guess my question for myself is if I stay off MTX am I being really foolish?? My anxiety is already increasing as I usually inject sat night, so that I’m recovered enough to work (albeit i can only work part time since diagnosis, as stress causes symptoms - and being a single mum, life is stressful enough..)
I really don’t know what to do. I want to stay off it until symptoms come back more severely, but aware doing that I might be straight back to square one.
I know others can’t really advise I just needed to share. I flipping hate this disease.. but the medication I hate more x
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I’ve been off all RA meds - MTX and Baricitinib - since I collapsed and was lying on my bathroom floor for over 24 hours. I was ok for the first few week because the MTX was still in my system (the Baricitinib had stopped working in February anyway) but by about week 6, still in hospital, the pain returned but because I had a wound on my hip the drs wouldn’t let me restart MTX because of the risk of decreasing my immunity even more. I’ve been out 4 weeks, still on no meds, but I have an appointment with a rheumatology nurse next week. I have mains in all my usual joints, but also now in both wrists!
Wow sounds like you’ve really been through it.. sounds very frightening. Bless you. I wish you well for your appointment. Thank you for replying.. appreciate all the words from everyone here x
I have Ankylosing Spondylitis, Inflammatory arthritis and Osteoarthritis and am on no medication whatsoever. I take paracetamol and naproxen on the odd occasion I get pain but most of the time I`m not in pain as I use more natural ways to control my diseases like anti-inflammatory diet, daily vitamins and minerals like vitamin B,C, D, zinc, magnesium, fish oil etc, regular exercise like swimming, cycling, walking, physio exercises, positive mentality etc. It`s your choice but if it were me, I would stay off the methotrexate etc and find alternative ways of handling the RA. You`ve obviously had a very bad reaction and if it were me I would way up the pros and cons and find the side effects you experienced to be far worse than the pain. There is no point in taking medication if the side effects are worse than the symptoms. DMARD`s and Biologics have alot of risks attached to them including increased risk of cancer, infections etc as they`re very strong immunosuppressant medication. This information is found in medical journals. Patients have to weigh up the benefits and risks. You`re certainly not being foolish for staying away from strong immunosuppressant medication as it lowers your immune system greatly. Your instincts will be telling you to stay away from it. However , it`s up to you what you do as you`re in charge of your health.
There are loads of people around the world who won`t take DMARD`s, Biologics because they once took them and had really bad reactions to them or some like myself think alot of these medications are just not good for you because they`re being peddled by the pharmaceutical industry who want to maximise profits and want to keep patients on medications for life as it`s more profitable than a single cure. Why have natural remedies been looked down upon by conservative medicine? Rockefeller over 100 years ago transformed the medical industry by modernising pharmaceuticals and using the petrochemical industry to introduce alot of chemicals and god knows what other ingredients into medicine.
In terms of RA just look at patient histories from the 1950’s and compare them with the current day. The prognosis for patients then was not great, and on average a 10 year shorted life span and many deformities.
These modern drugs have been a game changer for millions of people. Sadly not everyone, but the vast majority.
And biologicals are monoclonal antibodies, so completely natural!! No petrochemicals involved. You wouldn’t do very well without having any antibodies in your blood! They are the closest we have got so far to a cure.
Me too…..but cant bear the chronic pain returning. In the 41yrs I have had this…I have tried everything from diet to alternatives and spent £’s. Nothing helped apart from steroids and now Biologics…now getting a lot of chest infections 😭
Thank you.. sounds like you have a lot of insight and appreciate hearing your experiences too. I wish you well in keeping well, sounds like you have a very positive mindset.. I know I need to do sone reframing on that front.. all the best x
There are lots of other medications. Mtx and sulfa didn’t suit me either. It’s not mtx or nothing. Take a look at the medications info on NRAS website and/or ring their helpline for someone to talk to who understands. X
You sound as if you need a lot of support and help with both your medication and the way this is making you feel. Good suggestion from Madmusiclover -call the NRAS helpline for sympathetic ear and think about asking your rheumatologist to look again at your medication. It’s your body and if what you’re taking now doesn’t suit you there definitely are masses more different alternatives to Methotrexate. I loathed it, couldn’t tolerate it and refused anything more to do with it after three years of misery!
Don’t give up on the drugs - there is one which will suit you and your joints will be a lot better off in the long run as this disease take no prisoners in its relentless quest to make you feel lousy. Best of luck and hope things even out for you very soon.
I think you best move is to have another try to have a word explaining what you have told us with somebody on your rheumy team. If you can’t reach them have that conversation with PALS…the Patient liaison service at your hospital who might get you an earlier appointment.Otherwise try to speak to your GP.
On the whole it’s not a good idea to give up your meds……but missing one injection shouldn’t hurt. …& see how you feel . Central nervous system symptoms are not unusual with some of the drugs we take, & I know how frightening they can be. Even though the thoughts keep coming back, and you know it’s the drug talking….it’s difficult to ignore them.
I suffered badly with a couple of drugs I was prescribed early on, but reasonably soon my rheumy changed my meds & things settled down….but when you have the symptoms they are hard to ignore.
But hang on in there..you know these thoughts are not real, but if things get too difficult over the weekend, do call111, …they have clinicians on duty who will be able to help you.
Do let us know how you are getting on …I really hope you find the meds that will suit you very quickly.
thank you for all your replies.. hearing others experiences really helps. I feel my medical team dismiss the side effects, or other aspects of the disease.. particularly mental health related.. bug yes I’m aware there are lots of different medications. I guess I’m also loathe to keep going through the process of new medications, the constantly changing side effects etc.. .. when I’m fighting hard enough to hold down my job, look after my daughter, adjust, accept..
but I know still early days..
posting here really helps, thank you for taking the time to respond x
That word ACCEPT says so much….if you can achieve that & you accept what now seems impossible it will all fall into place…..so keep trying & you will hopefully surpise yourself.
Yes definitely a big word.. I’m a lot more accepting than I was.. but it’s a continuing journey I guess.. and I do have good days, just the bad, are very bad!
Just to say other drugs work in different ways that don’t make you feel ill and do help. I got through 5 before I got to mine. That one is waning now so about to try my 6th. Keep going; you will find one.
Thank you.. and yes I know it’s trial and error. I def think I have medication anxiety in general which doesn’t help, so a lot could be psychological..
My RA is not well controlled. On Tocilizumab that didn’t work well alone so consultant added Hydroxychloroquine… and my joints are now very deformed and most painful 24/7…. Losing my mobility and independence. The pain is so debilitating. So my rheumatologist has now decided to add another drug to boost the Tocilizumab… Sulfasalasine… 2000 mg/day.
This worries me. What experience/side effects did you get? And how long were you on this drug? In the past when I was having Enbrel injections I was forced to take methotrexate too, apparently to boost Enbrel’ s effectiveness… but I could not tolerate it, either in tablet form or injection. I honestly felt my body was being poisoned. My then rheumatologist didn’t want to accept that how thar dreadful drug affected me. Eventually she agreed to stop methotrexate under the condition that should Enbrel fail I would agree to take methotrexate again… Well, I didn’t need to take methotrexate… and Enbrel worked extremely well for 14 years until I had my second knee replacement operation (I had 2 knee replacement operations in a year) . I was then put on 2 or 3 other biologics that simply didn’t work.
I would be grateful to hear from your or anyone else’s experience of Sulfasalasine. Feel rather nervous having to add yet another drug to make Tocilizumab work more efficiently.
It was a long time ago that I tried it. All 4 DMARDS made me feel poisoned. Enbrel was ok but didn’t work at all. I’ve been in Bari for about 5 years but about to change as it’s not working as well as it did.
Thank you. Enbrel was a godsend to me for 14 years. Baricitinib didn’t work, neither did a few others… My consultant scares me when he tells me *we’re running out of treatment for you now!´…
Hi JGBH I have been on sulphasalazine plus hydroxy and now metho the triple combination has kept me stable and well for 5 years. I have had no problem with sulphasalazine. There are coated ones meant to be easier on the stomach. I know we are all different so we just have to keep trying till we find what works for us. We are closely monitered on drugs new to us. I hope you find what works for you soon.
Hi Hopeful1 and thank you for your reply. I cannot tolerate methotrexate and am on Tocilizumab weekly injections. Am dreading adding sulphasalazine to my many other drugs. A 2000 mg/day has been prescribed starting slowly with 500 mg/day for the first week and increasing by 500 mg each week until the 2000 mg dose level is achieved.
At what time do you take it? It was suggested 1 tablet in the morning (but can’t because of taking other drugs then so at lunchtime) and 1 tablet in the evenings together with Hydoxocobalamin. Did you have any side effects when you first started using this drug and if so how long did it take before your body adjusted to it?
Of course we all respond differently but it would be useful to have an idea.
Hi JGBHI sympathise with timing of drugs and what can be taken with what and what gaps needed. With my 3 conditions I balance lots of timings and am grateful for each one that keeps me ok. I take sulpha twice a day, on a full stomach and making sure I drink plenty of water through the day for all drugs. Have you checked/ asked if the sulphasalazine is coated? I think they sometimes prescribe omoprazole or something if worried about stomach upset by drugs but ask your Dr. It was so long ago I cannot remember if I had much trouble starting on it..but that is probably a sign of no significant problems. As with all these it can take time to adjust. I can only tell you my experience, not what is right for you. Good luck and keep hopeful!
Hi Hopeful1, Thanks again for your reply. I do not know wether the Sulpha tablets are coated but will need to phone the RA nurse once I get back home (away at the moment) to find out. In any case I have taken PPIs (omeprazole) for years, unfortunately. May I ask you at what time your take this drug and the dose? Is it 2000mg/day?
Like you I have many health issues to ´manage ´. It is not easy. So I will have to try this medicine and hope it will help my biologic to work. Best wishes,
I have sero-negative inflammatory arthritis and Behcet's syndrome( a rare type of vasculitis), and I take Stelara, a biologic for the Behcet's + colchicine and 2gms sulfasalazine a day. I don't appear to have any added side effects from adding this. I haven't even caught Covid. I'm also 5mgs prednisolone as I had it for so long that I developed adrenal suppression. Hope this helps. My sulfasalazine are enteric coated.
Hi, so do I understand correctly you only take 2mg/day of sulfasalazine? Or is it a typo error? My rheumatologist wants me to take 2000mg/day…. Starting with 500mg/day for a week and building up to 2000mg over the first four weeks of treatment.
I, too, take 5mcg Prednisolone plus 200mg/day Hydroxychloroquine and Tocilizumab, a biologic, by injection once a week, plus other drugs.
Sorry if I confused you, I take two 500mgs twice a day so yes the same as your consultant wants and I too built up gradually. Many years ago I tried sulfasalazine and back then I couldn't take it, horrendous headaches but this time ok. I also take other meds for other conditions and am awaiting a THR in the next few months.
Thank you for clarifying. I am not sure i want to take sulfasalazine… my skin is already very itchy and that is one of the possible side effects. I could not cope with more itching. Furthermore I received the tablets yesterday and was shocked by their size! I could not swallow such big tablets as I already have problems swallowing smaller tablets. I have Sjogren’s as well. So not sure… what to do. Have sent an email to my rheumatologist to explain. They’re on strike again for 2 days and further strike in September so not sure when I’ll get a reply.
THR is that total hip replacement? Good luck with this. I had one on 1st February this year. It went very well and to be honest I didn’t find it painful post op being used to high level of pain from badly controlled RA (had RA for 38 years) and compared to full knee replacement. That’s more painful. Had both knees replaced in 2017 and 2018. You will need some help for 4/6 weeks when you get home. Living alone and a long way from my family (they work) I went into a care home for 6 weeks for respite care. I could not have managed alone because my RA is difficult to control and I am losing my mobility and independence. Having no pain in that hip is great. So good luck again.
I wish you good luck! I was on MTX 6 months ago for flares in my knees and ankles, neck, shoulder arm. Seemed to help for 3 months then I started getting short flares again. Then longer ones. My hair started falling out and looking back, it did ruin my mood. I was injecting too but had constant stomach upset. I stopped 4 weeks ago. Also gluten free, grass fed beef, NO DAIRY! I think dairy is a culprit so it’s all gone and so far, no flares. I have OA in my hip that has started, so Im exercising and it helps. I take 50 mg of lyrica for neuropathy. Will not take more because it makes me very forgetful. Tried celebrex, but ankles swelled so forget that. I am managing. I have achey hands, feet, very stiff in the morning and I have a referral to pain doctor. I want to try low dose naltrexone. Fingers crossed.
Side effects, for me, are not worth it. I will try to be as healthy as I can. But it is also true for many that they do not have the choice of going off meds.
Thank you., I too am dairy / gluten free and don’t eat any red meat (but didn’t before). I don’t know if it directly helps my RA, but I’ve suffered with GI issues / IBS and it def helps with that.
Thank you for sharing your experiences.. so many similarities with many here. All the best to you x
I've found that I've had a lot more mental health problems in the last while. I was diagnosed a year ago. The steroids made me feel all over the place. Mood swings , panic etc. Methotrexate has been fine for me, and sulfasalazine as well. I then started amgevita. It's been an absolute game changer. I went from a cripple to nearly being back to normal now.
But my mental health had went off a cliff recently. I thought it was because of the biologics. But my RA team are not convinced that's why. I've had problems in the past, especially when I was a lot younger. So it might be that I'm just experiencing a dip now. Unfortunately they don't have a lot of time to help with these things. They just tell me that this is the GPs responsibility... and my GP can't be arsed helping other than recommending some more tablets.
My mental health was good before RA. And then for about a year, all my focus was on pain. Now that I'm better, things have changed again. Hopefully it's only temporary.
I hope things get better for you. Sometimes I feel like the mental health problems are worse than the pain of RA. Keep talking to people about how you feel. You're not alone!
Thank you.. and yes likewise my mental health has deteriorated since diagnosis, but such a big life change which feels very lonely., when others can’t see it or understand,
This place is so great for sharing and helps knowing others here understand without judgement or assumptions x
I hope you are getting the drift…..that most of us went through periods where we just wanted to give up….because “that’s not me..I’m different”
But along the totuous road there comes a time when you feel yes! I go along with that! Some sooner than later..But I reckon most of us get there in the end!😊So try to be optimistic.
RA can have CENTRAL NERVOUS SYMPYOMS (CNS) issues that develop as RA Passes the BLOOD BRAIN BARRIER - it attacks us and can cause Depression, etc.
look up all about RA / CNS ISSUES. Once RA controlled these “SYMPTOMS” (you are not crazy) will calm down and be sure to LIST THEM as NEW CNS SYMPTOMS - very new for you - not normal.
I’ve tried to tolerate methotrexate for a few years now but I’m now off it completely.
When I’ve come off it in the past At first I m ok without the methotrexate but then I start to really struggle. Then when I’m desperate I go back on it. It’s not ideal but it just makes me so sick and I struggle to take it consistently.
I’m trying a new drug at the mo (without methotrexate) it’s not doing anything for me yet and I’m actually thinking about asking for methotrexate again as I know it works! I must be desperate
It’s so rubbish isn’t it.
It’s good you have a consultant appointment coming up. I would definitely push to try something else. There’s lots of drugs out there.
This is very similar to me., loathe being on it, then when I’m off it, as symptoms slowly return I think I’m better on it.
I will def discuss with my consultant, he knows the problems I have.. albeit I don’t think they fully appreciate the mental side effects. Is so frustrating and tiring,
I tried 3 dmards and decided the side effects ( some of which were mental health related) were too much and I gave up. I’m always in pain as I can’t take anti inflammatories either and my finger joints are pretty bad. However , none of the drugs I tried ( mtx ssz hcl ) helped my joints anyway so it was easy to stop them. I was a yoga teacher before this illness and I find meditation and stretching definitely helps to keep me happy and seems to help my joints as well. Only time will tell if the risk of no meds was worth taking . I only know i feel a lot better off than on these drugs . I wish you well and hope you know you’re not alone .
Hi.. can I ask how long you’ve been off medication?
I too was super fit pre diagnosis, qualified PT and was a power lifter. (Albeit that sounds more heavyweight than it is!). Then about a year ago my knee swelled up so bad, I could hardly walk, drive, get dressed.. needed a stick.. then my other knee started. Then after covid all my other joints became painful,
The medication has improved my knees quite a lot. But I’m in varying levels of pain with them constantly. I do try to maintain exercise though.. which does help.
But yes the MH side effects have been significant. I did have mh issues before, related to ptsd / trauma. But after my MTX does it is heightened and I’m completely overwhelmed and irrational, it’s very scarey,,.
I am keen to stay off meds, but similarly don’t want to get really bad again physically. All just so hard, my consultant has mentioned Leflunomide so he would probably try that next.. but I don’t know much about it,
Appreciate hearing all other experiences here.. all the best to you also x
I’ve been off medication for over a year . I have family in Spain and have spent roughly a quarter of my time over there . I believe the warm dry heat plays a significant role in helping me control the disease, as my pain returns when I’m at home too long. I know that if this option was not available to me , I’d be back trying more drugs to try and find the right one . I’m really sorry you’re facing this dilemma … remember though… no one else has the right to tell you such bad side effects are worth it.
Do reconsider….not taking Disease Modifying drugs for RA can come back to bite you with damage that is irreparable & irreversible.
After all…do you really want to be in pain all the time?
Good as it is ….Methotrexate does not suit everybody……there are now many alternatives..& we do have to be firm when we decide it’s not for us.I took it for 7 years very successfully, but over night it stopped working….it caused central nervous system symptoms & luckily my rheumy recognised that & changed my Dmard immediately.
So start with your rheumy nurse … I find the nurses have more understanding of drugs that just ‘don’t suit’ somebody, than the rheumy who wants “proof”.
I completely understand why you’ve come to this decision, and I know it’s hard. I just wanted to explain another potential issue.
I was diagnosed with ankylosing spondylitis at 51yrs of age, after struggling over 25yrs with back and pelvic pain. I’ve ended up with both heart and lung issues, from the years of uncontrolled inflammation. So just wanted to make sure you were aware it can affect other organs as well as joints.
Also although biologics have an increased risk of cancer, that risk is found to be very small, and the Nass charity found no increase in cancer in patients using biologics. Also uncontrolled inflammation also increases the risk of cancer. There are many other meds worth trying, that will give you a quality of life, to enjoy time with your kids. Definitely contact the NRAS support line to discuss it with them. I hope you find a solution, I truly do 🤗
Thank you and yes I’m aware of how this disease can affect the whole body.. I haven’t come to a final decision and don’t plan to be in medicated indefinitely. Just 3 weeks ago was terrifying.. my head was so black in its thoughts.. and seeing my daughter see me that way.. was heartbreaking. I couldn’t just talk myself out of it - and I’m a trained Counsellor and volunteer for mental health charity.. but nothing took the darkness out of my head. Albeit it did pass..
I will discuss again with my consultant and look at other medication options. I think for now I just needed a break.. thank you x
You need to speak your your rheumatology team. There are other meds. Be careful as I left my RA unmedicated ( thought I could deal with it myself) and have damage to my joints and scaring on my lungs(only mild). As I see in many posts about meds some people manage without and some don’t.I hate the medication(even a paracetamol but a biologic put me in remission and has given me a lot of good years, enabling me to walk, ride a bike and carry on working as a cleaner! A good balanced diet will help, exercise, even gentle exercise will help. Speak to someone about this ASAP, even your GP I find writing a email to GP better( ask my GP) as it gives you time to think and don’t feel so rushed at appointment. Hope all goes well for you.
Thank you that’s very useful to hear.. I really don’t plan to be permanently unmedicated., I was so unwell last year pre any meds, and I have to work and provide for my daughter on my own.. I think I just needed a break and to reassess. But thank you for sharing your experience and I wish you well also x
I don't think coming of mtx like that is going to improve your RA, probably the opposite. I'm not a specialist but you need to explain to your consultant what's going on, also the ready nurseries are very good. I don't tolerate high doses of mtx, gut seem to have a balance now with it and a bio jab. One drug I can't tolerate is sulfasalazine, got really bad side effects, it's just a case of finding what works for you, good luck.
I don't think coming of mtx like that is going to improve your RA, probably the opposite. I'm not a specialist but you need to explain to your consultant what's going on, also the ready nurseries are very good. I don't tolerate high doses of mtx, gut seem to have a balance now with it and a bio jab. One drug I can't tolerate is sulfasalazine, got really bad side effects, it's just a case of finding what works for you, good luck.
Thank you.. and no I don’t plan on being off long term.. I just needed a break..
I prefer consultant to the nurses, there is only one that I feel has some understanding.. the last nurse appt I had (different nurse) just left me in tears. She was very condescending..
sulfasalazine didn’t work for me either.. and yes I know is trial and error. Hearing from you all has helped, so thank you x
Just wanted to send you some words of support. I too have a 15 year old daughter and have single patented and I know how much you want to protect them from frightening truths and your own vulnerabilities. I’m so sorry you’ve found yourself in such a very difficult situation, that sounds so awful and no wonder you have come off your drugs.
I’m just echoing others but there are many different drugs to try. You’ll find something that works if you have a good rheumy consultant and you should be able to have both things - stable mental health and effective medications. There are so many options to try. I’m currently forced off medications that work so well for me but are blasting my immune system too badly. It’s constant trial and error and it’s tough.
Hang in there - it’s not long until your appointment. Be brutally honest in it and say how much MTX is not working for you - they need the big picture. Try to be open to trying something else as you don’t want avoidable progressive damage to your joints. Sending you a big hug and lots of strength vibes, you are holding everything together and things WILL get better x
Thank you so much for your words.. I really appreciate it. Everyone here has their own struggles with so many things, but is reassuring to hear from you all.
My daughter has been great, she comes to appointments with me sometimes.. and although I try and shield her and still be the adult, I can explain to her when I’m feeling really low.,and hope that I don’t put too much on her. She has got better at housework and helping in general though, so that’s a positive!
I’m sorry you’re going through a difficult time at the moment and having to be off medication because of it.. so I do hope things improve for you in time.
Our immune systems are very individual, and what works for one person won't work for another, and that includes diets. Unlike he current advice, I find that red meat improves my IBS!
I am drug free right now except for paracetamol. I was told early on to take it all the time, not just occasionally when the pain gets bad, as it works better that way. And I know if I have missed a few doses, because yes, the pain increases.
I like others have found side effects are worse than the drug. I can't take NSAIDs, even the COX2 ones. Then it was sulfasalazine and boy, that was fun - not! Nice big systemic reaction to that one, rash all over, now in my records to make sure they don't give me any sulpha drugs.
Then it was methotrexate. At first I felt better, pain controlled, but more importantly I no longer felt I was walking through treacle, my hips were free again!
But it didn't last and again, the side effects outweighed the main effects. It had also stopped working.
At first the rheumy nurse said keep going, but I put my foot down. She said fine, you are due to see the consultant in a few weeks, discuss it there.
Not much discussion went on, so much for the Personalised Care agenda. She tried to talk me into continuing with MTX because 'not enough of your joints are involved so you don't qualify for any other drugs'. She said she would see if she could find a lower dose which I questioned. I was already on the lowest dose and yet it wasn't working, and the side effect where bad!
She said she would get back to me, but that was nearly 2 months ago and I have heard nothing. So I think I will be joining you in the no medication club!
Maybe there will be something for me in a few years time when they change their protocols and pathways. When NICE and NHS England negotiate higher drug tariffs and lower drug costs, or maybe even when Personalised Care training is rolled out to all clinicians so that we can actually have these conversations with them and be believed when we tell them that the side effects are worse than the disease.
It may be that methotrexate is not for you it wasn't for me almost did my liver in. Here's the thing I'm fully aware of the side effects of meds and I am also very body aware. My thing is I worked with rheumatoid patients during my training and seen the patients who used the old medications and how disabled they were and how cruel this disease is. If you think it's the methotrexate affecting you it will be we know our own bodies, please though get in touch with your nurse specialist and tell her your feelings and that your not coping with it. An alternative will be available for you definitely but be aware of how much no medication can effect you. I'm fully aware as I tried without and at one point couldn't even brush my hair or fasten my bra. It's scary all meds have side effects especially paracetamol although properly used it's a really effective painkiller but in conjunction with other meds and not for rheumatoid on its own. Life is hard sometimes we have to talk things over with our selves and deal with what's going on in our heads and bodies. Please be aware that scary though side effects are they don't happen to everyone but if your aware of your body you will know yourself. Speak to your team that's what they are there for. If you can't say the words send them an email.
Thank you.. and I definitely don’t plan to be completely unmedicated.. and yes I will discuss with my consultant. I tried to speak to a nurse, which is usual route..but they’ve had to close our nurse line, through lack of resource., and I was due a 3 month consultant check anyway so time wise it works..
thanks for sharing your experiences. Wishing you well on this journey x
Hi Sapphire. I feel for your situation as also tend to get bad drug reactions to all kinds of meds. I'm recently diagnosed too and methotrexate gave me a massive reaction on day one at a small dose so never taking again. I also have issues with nervous system dysregulation( Complex ptsd) and it very much affects how our systems function. Its one of those things that can be hard for others to understand and can make you doubt yourself. The RA inflammation itself gives me that black hole depression you describe and it can come on very suddenly. When it does you lose all sense of perspective. I'm heading back to the nurse to discuss meds again but I"m very reluctant . I'm working on findings ways to reduce inflammation generally in the hope that it will reduce symptoms and maybe help my tolerance to the meds. For me gut health seems to be very important, but the no. 1 factor is identifying and reducing stress. Finding ways to deal with mh triggers is also critical as this throws the whole body into the flight/ flight /freeze response. Excercise is also good for RA and stress too. We are all so different. I met a woman in the opticians with RA who has never had a side effect on any meds ! She has no idea how fortunate she is. This is a hard condition to accept and I do think a lot of that is due to the meds. You are not alone and I wish you the very best in finding a way forward that suits you and your nervous system.
Sounds so similar to me.. I live with CPTSD..and get triggered by many things..which exacerbate the RA. And yeah the medication journey so far has been really tough..well all of it..
My active inflammation has come down, though I still get significant stiffness and pain in my knees.. I need a partial knee replacement in my right knee, but am too young..
But yes trying to keep well is the most important.. and avoid stress, though having to stop working full time and reliant on universal credit,, I constantly worry about the future and finances. But then I know we can only deal with what’s happening today..
wow the dream to never have had any side effects!
Thank you for your words and support. This place is so great x
You may be aware of this already Sapphire but I've found The Crappy Childhood Fairy on Youtube realĺy helpful for advice on managing triggers. She has a free course on using journalling. It definately helps my RA symptoms too.
If my personal experience is any help: I stopped methotrexate because of large mouth ulcers, loose bowels and feeling depressed and stupid (my daughter-in-law thought I was getting early dementia!).
I had previously tried sulphasalazine and hydroxycholoquine (allergic reactions to both) and leflunomide was contraindicated because of my erratic blood pressure readings.
I went on azathioprine, an old cheap drug, which, although it made me nauseous, I was otherwise able to tolerate - and the depression and gut symptoms stopped. Marvellous - I felt so much better and could think again!
Later because of failure to control the disease I went on a biological - adalumimab, which has been excellent but I'm still on a lower dose of azathioprine, as some inflammatory markers are still raised and I have a minor return of joint swelling and pain the last 3-4 days before the next injection.
So discuss alternatives with your rheumy team. Look up the alternatives on the treatment pages of the NRAS website so that you are prepared for a full discussion with the (rest of) the team managing your condition. As with any long term illness, you manage every day - they provide the expert advice to guide you.
Hi Sapphire, it’s hard isn’t it, I bet we’ve all been around the block many times in terms of the frustration and despair RA and the meds can cause.
Like you, Im sero positive. I was very fit when I was diagnosed, a keen runner. Went on mtx but stopped due to side effects, then offered Etanercept but when I read about the risks, I had a melt down and told my Rheumy I didn’t want it, she said fine but you’ll be back begging for it in a few weeks and I was.
It worked well for 8 years and whilst I’ve still not been able to accept having RA, I find it easier to ignore it if I’m not in as much pain because meds are working.
I tried diets, supplements etc and think there is a cure but echo what others have said about the profits of the Pharmaceutical companies. These drugs cost a fortune.
My little girl is 7 and is becoming aware of how RA affects me physically and mentally and I’m quite bitter about that to be honest, I hate the damn thing, it’s crap but without the drugs I wouldn’t be standing.
Best wishes to you and your daughter, let us know what you decide regarding the meds.
Ah you have a tough gig needing to balance meds for RA and avoiding sinking into black moods etc. In my case while not liking taking MTX it provides reasonable quality of life, I'm in remission at present o pain free from RA pain, but maintain my MTX dose.
Can't say how long due to us all being individual, all I can say in my case after 2 weeks I know RA is getting a grip on my system again.
Are you getting mental health meds, treatment, therapy, support? if so sounds to me they & your RA team need to "talk" to each other. May take you needing to contact both lots explain issue & swap contact details to both teams. Probably best not to wait till 4th September, plus remind consultant & team of your history, know it's a pain but don't always recall your needs.
Life with RA is a roller coaster each of us balance what's best for us, our life, but know it's vital you communicate to all teams all round, asap rather than struggle.
As others have said lots of organisations you can turn to. All the best
I stopped meds and stupidly, to put it mildly, didn't let my rheumy know. The reason I stopped was because of a serious hip infection which the consultant at the time reckoned was due to immune-suppressants, namely Enbrel, I was taking back then, hence was afraid of getting more infections courtesy of a different health condition I have. The pain in multiple joints gradually got worse over the weeks and after approx 6 weeks I was in a right old mess and had serious mobility problems. How I put up with it all for the following few weeks before asking rheumy for help, I'll never know. During that living hell, because that's what it was, I developed a persistent cough and later found out that the inflammation from the RA had damaged my lungs irreversably. Not saying you would be as daft as me by not telling rheumy , but it does show the sort of damage uncontrolled RA can do to us.
So sorry to hear that methotrexate is affecting you with ptsd it's not a good idea to take yourself off your RA drugs without informing your RA dept of the problems your experiencing with the mtx. If your appointment is not due until September is there a help line at your hospital , not all the RA drugs suit everybody they like any other drugs can cause problems but can be changed before your appointment, l have over the last 20 yrs with RA had drugs which have not been right for me and l have stopped them but always have contactable the help line or the consultants secretary to inform them of the side effects and and drugs have been changed. Its more trial and error in first diagnosis drugs ad we are all different so what suits one patient doesn't suit another and you need the support and knowledge from them to help you with this and a different drug recommended for you as inevitably your RA symptoms will return and that can be avoided hopefully with a talk to right people. Hope these suggestions help you, Good Luck with your future treatment.
Another point of view is the medications are your friends. So hate the disease but not the treatments that in time may enable you to lead a normal life. There are so many many worse things to have and you’re still in the early phase, so it is a shock but with time and patience you will probably be fine. The RA isn’t going to just go away so fretting about it won’t change anything the best thing in my view is to be patient and ok you’ve some nasty side effects at the moment but there are many other medications to try but there is a sort of route we follow and you’ve just done a few steps of the marathon not the 100 metre dash. You really need to talk to your consultant and stay positive. It’s not easy though. I wish you well. X
You are conflating so many different things there.
All the verified research I have read is saying that evidence of 20 years use of biologic drugs for RA shows they are very well tolerated in terms of side effects, have very very low risks of things like lymphomas, and are remarkably effective. Even just scanning anecdotes on here you can’t find “so many people who have bad side effects on them”. So the people you have been talking to must have some special characteristics that make them vulnerable to side effects.
And please tell me how a monoclonal antibody is not a natural molecule? They are made from living cells for heaven’s sake. Ok grown in a lab culture rather than extracting them from live mice and guinea pigs, but live.
As for the contemporary issues about health and lifestyle I think you also need to acknowledge that for many people making good life choices is very hard when you are poor, in substandard housing and unemployed. Saying it is people’s fault for being lazy and eating a poor diet is essentially telling me that my RA is my fault. I find it very insulting when people say if only you did x and y and ate weird supplements you would not have RA.
And as for corruption in the US! That is really way beyond the remit of this grouo.
I am poor and live alone in substandard housing and work only part time. I don`t live a cushty life as I live a hard life like many others out there. I know what it is to have no money, be lonely and live in a place where no one cares about you. It`s not someone`s fault if they have RA as it`s often caused by genetics but a person can control what they eat and go and do exercise. I don`t have time for people who makes excuses all the time about why they can`t stop going to Mcdonald`s and why they can`t go for a walk! I don`t have weird supplements, I take vitamins B, D sometimes C, zinc, magnesium and fish oil. They`re popular vitamins and minerals taken by many people. I eat the best food I can afford and I don`t spend my money on cigarettes and alcohol so I`m able to get better quality food.
Also I`ve noticed that many people are brainwashed into thinking that they should automatically do what the doctors tell them without deciding if it`s right for them and thinking it through. I`ve met some doctors and nurses who are thick as too short planks. I once worked with a biology student who was working as a carer part time. She wanted to study medicine after doing her biology degree. She knew many medicine students and some should not have gained entry onto medicine degrees but because they have rich parents who make nice donations to their University, they got in even though they didn`t have good enough grades. The scare mongering of if you don`t take x, y or z medication then you`ll end up in a wheelchair is rubbish. Myself and plenty others don`t take medication for arthritis and we`re OK. There are plenty of people like Mick Mars from the rock band Motley Crue who was diagnosed with AS in the 1960`s when there was no treatments for arthritis whatsoever but he`s still travelling the world with his band. He`s had arthritis for over 55 years! It`s a mindset as well and if you`re not going to get off your backside and exercise (which helps alleviate arthritis) and do things to help your body then you won`t help your arthritis.
You know as well as I how variable these diseases are. There are a few people who mange without conventional drugs, but only a very, very few that have a confirmed diagnosis of an auto-immune arthritis.
I live in an exceptionally healthy way, and have done since diagnosis 13 years ago. Last year I had to stop my drugs temporarily, and within weeks I was immobile and in pain again.
Anxiety is a SYMPTOM of RA affecting the BRAIN. It’s not YOU.
You need to read articles below & others before you talk to RHEUMATOLOGISTS do that you are PROACTIVE in your TREATMENTS.
Also- when someone has the flu, they are not thinking clearly and they have to have someone help them. Living with a rheumatological disease, we need to have others help us to help our brain FUNCTION CORRECTLY in this FOG that ANY rheumatological disease can cause central nervous system which would include anxiety, depression, psychosis, as the inflammation passes the blood brain barrier. Please read articles below and research and then meet with your doctor to determine the best way to treat your CNS (central nervous system) involvement with your RA .
We are not alone, many of its experience, CNS issues - especially when the auto-immune disease is out of control, and not being maintained properly with medication
I don’t know if this would help you, (or if anyone else has mentioned it) but when I was diagnosed with RA, twelve plus years or so ago, and trying out all the different medications (and failing most of them), I was given Depot steroid shots whilst between meds to keep me going. Many people are afraid of steroids and the bad press they have been given, but I always found they worked very well for me and from feeling extremely unwell, I would become like a new person within 48 hours of having the shot given. Not so much the tablet form though - those don’t work for me, and had side effects, (as do most meds which have to pass through my stomach!) You could ask your rheumatologist if you might be suitable for this to give you some relief whilst not on the mtx. I am treated for depression too and can still have the Depot shot, however I don’t have suicidal thoughts so be guided by your rheumy team. The relief lasts several weeks so it could be a temporary possible way forward for you.
I couldn’t,t tolerate Methotrexate. Next step was biologic. I tried Brenzys, Humira that helped with pain from RA fast but the longer iwas on it side effects were too bad. Now on Orencia and took awhile to manage symptoms (about 4 months) but so far so good with side effects. Been about 6 months. You need to try everything to get your disease under control. You have to try because the disease will continue to progress and you will end up with all kinds of problems.
I’m back on medication.. (albeit I’m about to run out and the hospital hasn’t sent my meds to my pharmacy)..
my symptoms flare up and down mostly with stress/work. Both of which are hard to avoid. So even medicated, when I’m stressed..today has been particularly bad.. it goes straight to my joints..wrists, fingers and knees mostly.. and it’s a vicious cycle. Because I can’t stop work, I’m a single parent and can’t manage.. and the stress of work / life makes me ill, medicated or not!
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How long before my RA is under control??
Had to come off MTX. What next?
Outcome of f2f
Flaring again, forgot how bad it gets, it's been such a long time
