What if the RA is not RA?

When I was first diagnosed with RA on August 11, I had no other symptoms apart from my wrist and thumb being very sore. I thought I had torn the ligaments or sprained them and after a few scratched heads and visits to A&E for X-rays, only then did my doctor do a blood test. I was then told I had rheumatoid arthritis.

About 2 weeks into diagnosis and after starting the steroids, hydroxychloroquine and sulphasalazine, I began to experience the chronic fatigue, nausea, dizziness, and feeling very very low indeed. It was all part of the RA I was told.

But 10 weeks later, the only change has been an improvement with the chronic fatigue, nausea and dizziness. Things I never had at the beginning.

The pain has never gone away. Only when I was on the higher dose of steroids did the pain improve. Now the steroids are back down to 5mg a day and the pain is still exactly the same as it was 10 weeks ago.

So what on earth are the pills actually doing? The steroids mask the pain but they don't stop it.

I'm starting to wonder if I really do have RA after all?

What if they're wrong, and it's the DMARDS themselves that have caused such awful side-effects and not the RA? I've just more sick since starting the pills. Have been off work for 6 weeks.

I'm starting to doubt every single thing.

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122 Replies

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  • You really do need to stop questioning everything Jules. Allow yourself some time to accept you have a chronic disease, that things are bound to be be different, life's changed, you're grieving for the good health you had before. Rheumy's don't start us on these specialist meds without good reason so you can be assured that between the investigations & symptoms you do have RD & they're not medicating you for the sake of it.

    You've been fortunate in a way, you were diagnosed relatively promptly. The thing is the way you're feeling could have been far worse & for longer had there been a delay. The symptoms, they're the disease, the inflammation causing you trouble, but as your meds will be working to a degree it's bubbling under somewhat, it's a slimmed down version of how you'd be without those meds. Look back at your post entitled "Feels like flu all the time" & compare the descriptions you used to now.

    The steroids, they don't mask pain, they work on inflammation & in turn pain. That you're experiencing pain whilst reducing them indicates the inflammation isn't being kept in check & is returning, also that the DMARDs aren't fully up to speed. You need to be as we all have & that's a little patient. Nothing happens quickly with RD, not the meds, not the suppression, you'll start to understand.

    Please try to find something that will occupy your mind, try to relax. A bath with Epsom salts can be very relaxing. Some find they can relax into colouring books or even something as simple as a jigsaw.

    Be assured you're no different from the rest of us, things do feel worse in the beginning but it will change, you've just got to focus on that then hopefully you'll come to accept your new life with RD. You're not alone in this, many, many of us are here for you. x

  • I had the flu like symptoms two weeks after I started taking the DMARDS. I had no symptoms before. I just had a painful hand and thumb. Everything I've experienced has come on after diagnosis. And now my steroids have been reduced I realise the pain hasn't improved at all. It was just being kept at bay by the steroids. So maybe I have damaged my hand. No one has ever taken X-rays.

  • Maybe because it was caught & diagnosed so early the normal symptoms that send us to our GP, the flu-like symptoms, the fatigue, the inflammation, the pain & if like me being unable to walk even though I had sudden onset, weren't obvious for you. Just think how it could have been if things hadn't fallen into place, if you hadn't gone to A&E & had those X-rays & then saw your GP who took bloods & referred you. It seems to me as though you were fortunate, I would be pleased about that.

    The pain is caused by underlying inflammation, the steroids had been working on that on higher dose & as the dose is reduced you're feeling the pain, the pain of RD.

    When do you see your Rheumy or nurse? Maybe you'll understand better from them, possibly they'll explain better, either way you need reassurance.

  • I've seen my rheumy only once on august 11th. Seen an RA nurse twice since.

  • Rheumy's work differently so maybe next time you'll see him. For example some diagnose & then arrange to see you at the 3 month stage after initiating treatment, others every 6 months. Now I'm well established I usually see my Rheumy annually & her Registrar at 6 months, nurse apointments at 3 months. So whoever you see next time ask if they can take a little time to listen to your concerns & reassure you of your symptom timeline. You've only been on your meds at full strength just short of 8 weeks I think, correct me if I'm wrong, there's time yet to see if they're the ones for you. As you know it's a bit of a guessing game seeing which are going to work for you initially so don't despair, there are options if HCQ & SSZ aren't your dream team. x

  • But as I understood your original post last night you say you had Xrays in A&E..or did I misunderstand?

  • I had an X-ray on my right hand 10 weeks ago. But that only shows bone. It showed my OA And a few chipped bones. But it doesn't show tendons or inflammation does it? I don't know what to think anymore.

  • If you had an x-ray in A&E were they basically looking for fractures and broken bones? Or was the X-ray reviewed by your rheumy? There is a level of skill in interpreting x-rays and if whoever looked at it wasn't specifically thinking about RA they may not have noticed inflammation, or identified OA rather than RA. Inflammation can be seen on x-ray if you look for it.

  • Hi Sounds so similar to me: 4 yrs ago I went to the Drs with a very painful ring finger, was referred to Rhematologist, bloods ans scans on my hands and feet indicated sero negative RA..I felt fine but for my sore finger..was started on MTX and the fatigue started...over the last few years various dmards were added and it seemed like I was drowning in drugs, injections and fatigue, didn’t recognise myself..

    So 8 weeks ago I had an appt with my consultant who did X-rays and after looking at my blood history said “ in my opinion your main problem is Osteoarthritis “ Now he is the same Dr who diagnosed me in the 1st place and has monitored the dmards etc....so, he has stopped the MTX injections, stopped the Hydroxychloroquine And has sent me on my way with Naproxen and Omeprazole!!

    I feel like I have woken up and found the bright sparky personality I had before all the drugs came into play...I feel like I have been given my life back...none of the Dmards helped with the painful fingers and after two sets of bloods since stopping the dmards my inflammation markers have not changed (still 4-5)..

    The moral of my story is that Drs do sometimes get it wrong so don’t be afraid to question diagnosis and drug regime, wish I had done, and not blindly obeyed his every word...

    My rheumatologist is a brilliant doctor and will see me in 4 months to see how I’ve got on drug free..

    Sorry it turned out to be a long story, good luck with your RA journey and remember to question, question, question!

  • This is why in my opinion it is important to thread slowly on the treatment path in the beginning and find it nearly unethical to draw the deformaty scare card for all newly diagnosed, anxious and scared patients. Diagnosis for RA is far from straight forward, like in your case and only in 10% an aggressive disease with early serious deformaties. Taking toxic meds for long periods because of wrong diagnoses can really jepordize your health, and actually quite a risk to take. I am glad that all turned out well in the end for you😊👍🏻Simba

  • I so agree with you, I was diagnosed years ago and offered a mass of so called helpful drugs, some that have since been removed off the market, I just took up a healthier life style and more exercising, as in swimming, I use hot wax and keep joints moving, have I got RA well my consultant swears I have but is astounded each year when I see them that I'm no worse and don't have to suffer all the horrendous side effect some of these drugs carry, I'm not saying that I'm 100% pain free but I manage well on the odd cocodamol and treat my body kindly, I have no more deformity than I had all those years ago.

    We get one body and I'm happy to stay off things like methotrexate, hydroxychloroquine, sulfasalazine etc which I've been offered all of them, tumeric is shown with other herbs and spices to help greatly

  • Thanks Simba, you are so right , when I was 1st diagnosed I was told early intervention was paramount... and so the cycle of drugs commenced...scaring me half to death when I researched the side effects!

    So though I still have to contend with pain on a daily basis I can’t tell you how happy I am not to have Dmards and worse still the diagnosis of RA Hanging Over me.

    Kate xx

  • And you can really try other nontoxic treatment alternatives like adjusting your diet and taking right supplements as well as checking your thyroid function and your estrogen-progesterone balance. Getting things in shape in your body will at least decrease symptoms and inflammation. Good luck, I am on the same journey and have not once had a feeling I made the wrong choice. Still experimenting and doing research. 😊

  • I’ve started up on apple cider vinegar and Turmeric (golden paste ) as a starter...as my energy has increased my swimming has more purpose (not afraid to exert myself now)..

    I have a blood test due on Friday and will ask about testing my thyroid function.... it’s our body our lives the more we find out its functions and what it responds to the better..good luck

  • Sounds good😊👍🏻. I am presently taking Vit.B3 ( Niacindamine) high doses daily and have found it really makes a difference, less stiffness and more relaxed all over. There is research on the effect of Vit.B3 on RA. Not a bad idea, for me works better than turmeric.xxSimba

  • I also take Vit D.(prescribed by GP) and use a Magnesium spray topically.. will look into B3.. great exchange of info, thanks so much..

  • Here is a link to B3 therapy that may interest you😊

    doctoryourself.com/kaufman5...

  • Hi now that’s an encouraging article..do you take 150 mgs every 3 hours that they say is more beneficial? Or 300mgs x 3 times a day? ... going to look up suppliers in a moment, going to give Vit B3 a go....thanks again.

  • You can start with a lower dose like 250mg but you need to increase once you get used to it. It has been shown in later studies that best results when daily dose 4000-6000mg and this amount still safe. I started with 500mg x 5 a day= 2500mg. Am now taking 4000mg a day divided into 500mg doeses. Dubble dose for the night. Be sure to buy good quality, as pure as possible without a lot of fillers. Good luck and do tell us how it goes. You can also PM me if you have more questions.😊

  • Your posts are really inspiring Simba and Kate, I have made the same decision to come off meds at least for now, to see how I do. Yes I have daily pain, very swollen ankles and toes but I am back to being a kind mummy ( I had awful side effects on Methotrexate and Sulphasalazine and I am really trying to change my nutrition, upping gentle pool based exercise and having intensive acupuncture. I feel in control after a hideous year- it's wonderful!

  • Good luck😊👍🏻There are so many things we can do outside the meds that help us with the disease.Have you tried leaving out gluten and dairy? Quite a simple experiment that in fact as such has lowered inflammation for many. LDN may be another thing you might want to look into.

    ldnresearchtrust.org

    All the best and if you have questions don't hesitate to PM me.

  • Thank you Simba- I am transitioning to being totally gluten and dairy free... the transitioning bit is trying to give up cheese!!! I think sugar is probably at the root of my problems too so trying to give that up too but it's hard..., not harder than dmards though! Going to look into B3 as well. What is LDN?

  • Please do not give up sugar! I did the mistake and got into a lot of health issues. I can tell you more if you are interested.

    The good thing with just leaving out gluten and dairy for a month is that if you see a change you can try taking back dairy, starting with cheese and see if it makes things worse. It turned out that dairy was ok for me especially cheeses.

    Good luck!

  • Thank you will try for a month! Praps I'll wait with the sugar and just cut down.., thank you again xx

  • Good reading if planning to cut down carbs.

    functionalps.com/blog/2010/...

  • Sugar is the biggest killer on the planet. Natural occurring sugars are ok in moderation but stay off the added sugar.

  • This is certainly not true.Did you really read what the link said? This info is science based. Everything is bad in excess and refined sugar is not a good thing but sugar you get from fruits is only beneficial and diets that restrict their eating mess up your metabolism. Carbs, good fats and proteins in right proportions is needed for normal cell metabolism.

  • That’s what I just said. Naturally occurring sugars.

  • You could be experiencing pred withdrawal symptoms, and at 5mg, could have signs of adrenal insufficiency. Your adenal glands shut down when you're taking more than 10mg for more than a couple of days. Your body makes about 7.5mg of pred naturally when everything is working right, and your adrenal glands may not yet have "woken up" to make up the shortfall. You should call your rheumy and report what you're feeling. It could be the DMARDs side effercts, it could be they haven't kicked in yet to control the RA, and it could be you need to up your pred and then use a reduction pattern that teases your adrenals back into action.

  • I've done that twice now. For 6 weeks and then 4 weeks. Started pred at 15mg, then 12.5, then 10, then 7.5 and now 5.

  • Having been on prednisone for such a short time it is EXTREMELY unlikely that adrenal insufficiency is the problem. It is perfectly fine to taper in those steps for such a short duration of prednisone treatment. Please, trust your doctor. You symptoms could be caused by the DMARDs or RA, but not adrenal insufficiency. 5mg is considered the replacement dose of prednisone, so there wouldn't be any adrenal symptoms at that dose.

  • Thank you thank you thank you. The scaremongering on here is actually really freaking me out. I was on 12.5mg for only 2 weeks, then dropped down over 6 weeks to 5mg. My rheumy was really shocked when I came in so upset saying that I was coming off them too quickly. She told me to stay off here for medical advice and just use it for emotional support. This disease is so scary that when I then start doubting my own specialist because of what people have said on here, I’m in big trouble. X

  • What you were told about tapering steroids was just wrong Jules. Not only because it didn't apply to you having only been on them such a short time but because we're not medical professionals, we're in no position to give such advice (far too strongly imo). It resulted in frightening you which just isn't on & not what the forum is intended to do. So please from now on skip past such replies & trust that your Rheumy is working with you not against you & we'll do our level best to be there for you in a supportive capacity. x

  • Thank you. I will.

  • Pleased to hear it. 😊

  • My ra specialist told me that was rubbish. I went in totally freaked out by the posts on here about adrenal failure etc. Coming off the steroids too quickly etc and she told me on my dosage of 12.5mg that was nonsense. So who am I supposed to believe? I came off here for 5 days because everyone was telling me different info. That my drugs were wrong, that my rheumy was wrong.

  • I use NHS choices as a failsafe, as generally reliable and non scare-mongery. And it says problems only if high doses for long periods (over 3 months).

    I avoid many American sites as they tend to be very scare-mongery....

    However I find it helpful to get opinions from real people, as doctors can misrepresent things too. As ever, you have to make your own decisions....

  • Sensible advice Helixhelix.

  • Even after 7 years I have episodes of RA denial, I think it's quite natural to question it. Although experience has shown me that reacting by dumping my meds is not a good idea, even if it convinces me pretty rapidly that I do have the disease.

    I forget whether you are sero-positive for either/both RF and anti-CCP? I'm positive and it did help me believe that the doctors were right, although I was also in a bad way re joints so pretty obvious. And the drugs started working after 3 months which also convinced me, and it's still early days for you.

    But it could be that the meds you have been offered aren't right for you, and the steroids have messed with your emotions. Do you get on well with GP, rheumy nurse or rheumy? If so I would see if you could talk to one of them about how you are feeling. Also have you kept any sort of diary? As it's easy to think there's been no change when in fact there has been some.

  • I still wonder sometimes too HH...even though I went from walking on sticks & crying all night with such bad pain in my arms I couldn't get dressed for days,to being almost normal.

    The dreaded Mtx was my saviour..... for 7 years I led almost my old life & definitely didn't believe those little yellow pills were the reason....I convinced myself I was cured.....I don't know why I continued taking them (head in sand syndrome I suspect)until they went rogue on me & I was almost back to square one.

    Now,18 years on, I'm on RTX alone & I seem (?) to be so much better, my blood tests are all good, but I don't think I will ever accept I'm on some sort of RD drug for life....it's still at the back of my mind it will just go away!

    But hey...I can lead a 99% normal life & I'm very grateful for every pain free day...drugs & all!

  • I’m terrified of methotrexate. They are starting me on it next week. But still keeping me on the sulphasalazine and hydroxychloroquine

  • .

    Supplemental 'aside' (for research 🕵️‍♀️ 🔎 ) if interested:

    .

    🤔 More than you ever wanted to know about Methotrexate (MTX): healthunlocked.com/nras/pos...

    🤔 Another triple therapy gal: healthunlocked.com/nras/pos...

    .

  • If you want realistic, helpful advice with as little reading as poss this may help you Jules arthritis.org/living-with-a...

    It's been the veteran in my med drawer for 8 years & has served me well, I hope same for you. x

  • Ahhh link doesn’t work.

  • Odd, it is for me, try it again.

  • Hi Jules- this is my first post but I felt I needed to say this. I was soo against taking methotrexate & refused it for a long time but I have been on it now for over 10 years & it transformed my life. I thought I would have to give up driving, holding hands, drinking wine etc etc. Everyone is different & is effected differently but I was proved wrong. Keep an open mind & I wish you all the best. This is only my experience but thought I really should put in a positive where it is deserved. Good luck!

  • It’s really good to read a positive answer. I have read horror stories about methotrexate. About when to take it, the next day feeling sick and tired and exhausted. I’ve had three months of feeling like that already and not sure I can take much more of it. Glad it was worked for you x

  • Did you know sulfasalazine can make anxiety? I had very bad side effect ssl

  • I’m not surprised. Everything makes me anxious these days. Can’t wait to move into my new cottage. The girl I’m sharing a cottage with currently wakes up at 5am and bangs around the house with absolutely no cares in the world about me. Exhausted.

  • I keep a very detailed daily diary. Only seen my specialist once. Then seen nurse twice. She saw how I was. And said wait a few more weeks to see what's happening.

  • Very detailed diary. My rheumy was very upset that I was so upset. Yes they are now adding methotrexate because I haven’t improved in 3 months. I’m really worried about the new drug though.

  • Well I view it as my best friend. It gave me my life back, and for that I am very, very grateful. First few months were a bit wobbly - hair thinned, bit nauseous - but I started to feel improvements after 9 or 10 weeks, and then the side effects wore off too so life was good again. Give it a go.....

  • I am. Thank you. Hair thinning?

  • Yup...petrified me for a bit seeing a heap in the shower plug every morning - but it settled down and hair went back to normal.

  • The thought of this really bothered me too Jules and of all the side effects it upset me the most because I can put a brave face on nausea etc but not hair thinning.

    Because I am not body confident at all and getting reactive arthritis right before my 40th Birthday (?!) made me feel really, really low.. it mattered to me because I always had nice hair which people complimented me on, so it might sound daft to other people but it upset me.

    In reality, yes at the start of MTX I noticed quite a bit of loss in the plughole and changed my hairstyle a bit to compensate (moved my parting basically) and no one noticed. I did have a cry in the shower a few times seeing the reality of the disease and MTX in the plughole, I must admit.

    BUT - it settles down and the hair loss eased off. My doc put me on 5mg Folic Acid 6 day’s a week (not on MTX day) and I take it religiously. Now I get virtually no hair loss at all and all is well in that department for me.

  • I take folic acid already. But I already have really fine hair. Can’t afford to lose any.

  • Don't worry, it usually doesn't last. I just wanted to warn you so you didn't freak out at the first sight of a fallen hair, not to alarm you.

  • My hair is falling out slowly now, and mine is very fine. I'm worried about MTX as I think that will be the next move as my neck is so painful. My head feels too heavy for my body. I do feel for you Jules, and I do hope you get medication sorted soon.

    How often do you see the rheumy nurse? I get to see one of the team approx every 6 months, which I don't think is enough.

  • Right now I’m seeing her every 6 weeks.

  • I don’t even know what that means... sero-positive for RF And anti CCP?

  • I keep a diary every day and go through it with rheumy

  • If I were you I'd call my Rheumy nurse & discuss if there is a possibility of changing your meds.......even if there isn't she may have some ideas to help things along. Try to stay calm when you speak to her...having a rant doesn't help.

    Unfortunately it's not a OneStop shop to get any RD under control...but don't be afraid to ASK......don't just swallow pills -feel worse & put up with it.

    I know that's not very scientific....but it has worked for me 18 years. My first drug was Sulphasalazine, that I took unquestioningly for the advised 12, weeks- even though I felt dreadful...my Rheumy at the time said never "put up" like that again, & I haven't.

    You have only been diagnosed such a short time ...your Rheumatologist is still looking at your blood test results & tweeking your treatment, so try to get your head around all the rotten symptoms, & see if a change of meds helps.

    I know you must be stressing about getting back to work, & it's pointless me saying "try not to stress", but what's in your head is as important as how much you hurt.

    Hope your Rheumy nurse can help,

  • I'm actually very calm and clear when I speak to my nurse. I never rant. I keep a detailed diary and go through everything with her.

  • I wasn't suggesting you rant Jules, but sometimes when nothing seems to be going right we might get a bit heated, but on the other hand you have to be firm about getting your medics to really listen to "you" & not just put you in a category off "let's just wait a while".

    Believe me, it's a learning curve that goes on & on,...but in most cases there is a satisfactory treatment, in Ernest Hemingway's words.... It's a Movable Feast.

    Sincerely hope things look up for you soon. ...don't spend too much time on that diary...you're living it, no need to write an essay every day!

  • I only write a paragraph daily to update what I'm feeling so I can tell the rheumy nurse exactly.

  • Can you try every other day...micro managing this wretched disease encourages not thinking about anything else. I - like you - live alone & everything hurts more & is scary if you have no one to bounce off 24/7... Even chatting on the phone helps you forget the pain for 10 minutes.

    But you are so newly diagnosed ...in a month or two your Rheumy will have a better picture & will hopefully prescribe something more helpful than your present cocktail of meds.

    If you read the posts here there are very few who got the right meds from day one, & even less who never find any relief.

    So try to be patient - I honestly do know that is not easy when you feel dreadful, I hope the Rheumy nurse helps....but please try not to get hooked on Pred....maybe ask her for NSAID'?

  • I already taking diclofenic. I’m back Up to high steroids again because it’s the only thing helping the inflammation. They’re introducing methotrexate too so will be on triple therapy.

  • I tend to agree with you that the symptoms you are suffering from are connected to the meds more than the disease. Have understood that hydroxy is the least toxic of the RA meds and causes the least side effecrs and combined with Naproxen as an example instead of pred ( that evidently isn't working anyways) for pain relief would be my choice. Getting the pain under control gives you more time to reflect on your situation and think about the next step. I doubt very much that the all too aggressive med approach is always the best choice. But then again I do not know enough about your situation and I am not a doctor. Hope you will be able to talk through your situation with a medical professional who listens to you. xx Simba

  • I was similar to you. Hands and thumbs but I had massive deep muscular pa8ns in my neck and shoulders. I was fast tracked to the rheumy and put 9n steroids and told that if they worked I would start hydroxychloroquine.

    Did the steroids work? I was like Wonder Woman, if anyone had told be you could ever notice that you weren’t in pain I would have found that hard to believe but I did notice I wasn’t in pain.

    I had steroids for three months, big dose to start with (sorry can’t remember what it was) then I reduced every so often until I stopped completely by which time I started the Hydroxychloroquine, I still get aches but nothing like what I used to be.

    The downside of my steroids was that I became T2 diabetic, I had loads of warning about the dangers to my eyes with hydroxychloroquine but no one mentioned T2 - unfortunate considering I was on a pre diabetes study at the time. I’m ok now - I went on a low carb, high fat diet and ate my way out of the T2 so even though they had a w9nderful result for me I really wouldn’t want to take them again.

    Like the others say, I’d be pleased to have been treated so fast. I’ve met so many people who have not been treated, told that’s what to expect at their age etc that sometimes I just can’t believe how lucky I’ve been.

  • The highest dose I've ever been put on was 15mg. Then weaned down over 6 weeks to 5mg. I then was off them

    For two weeks and my joint pain came back exactly as before. So they've had me on them

    Again for 4 weeks.

  • I really do hope you can find a knowledgeable professional, hopefully one that represents integrative medicine. I think you, like everyone else in the beginning of their RA journey, need someone to go through their individual situation and story, someone who will open doors in different directions when treating and understanding RA, not just offering you a standard med protocol with no other dimensions. All the best. xx Simba

  • Hi Jules, only your rheumatologist can confirm your diagnosis, but when I was first diagnosed I was told that the pain/swelling is unilateral with RA and can be osteoarthritis with bi pain/swelling, a blood test is not the best test for RA either because it can be rhesus positive and you can still not have it, if your taking a cocktail of drugs and there not positive they can make you feel worse, I take nothing and I am no worse than my sister who's been on them 5 years, in fact I have less problems than her and she feels nauseas most day and her rheumatologist says its the drugs.

  • Thanks. Now I feel more lost than ever.

  • The thing to bear in mind Jules is that we can each only tell you our own story. This is such a variable disease and the stages of development can be so long & slow that it's not easy to compare. You can have answers from people who have early stage non-aggressive disease that can be controlled with lifestyle, all the way through to those who have well established aggressive disease that resists every drug thrown at it. The majority of cases are those who have a normally aggressive disease that is well controlled with drugs - and so they are out living their normal lives and there are only a few of us on here.

    All you can do is inform yourself, and then ask questions of your medical team. You are doing the right thing keeping track of your symtoms and questioning things, but you may have to have a bit more patience before you find answers.

  • I am in the exact same position as you. I can totally understand you feelings and concerns. I'm kinda in limbo until I see my rheumatologist

  • I think it's a fair question.

    I don't personally doubt that I have PsA or similar. I started off with knee problems, then bilateral achilles tendinitis, plus shoulder pain.

    I was placed on sulfasalazine. Things got worse. Then put on leflunomide. My hips are now damaged, plus I've had continuous flare ups. Clearly the drugs don't work.

    I think that sometimes doc's just don't know. I'm also certain that (for some people) the drugs either don't work, or cause further health issues.

    There are times when doctors simply make mistakes.

  • Read somewhere that RA drugs do not work for 1in10.

  • So where does that leave me? What is anyone supposed to do!

  • Same place it leaves me Jules...in a quandary!

    At the moment I am just taking painkillers. I stopped the leflunomide just over a week ago after the umpteenth flare up. I could see no good reason for taking a poisonous substance, if it clearly does not work!

    I have written to both GP and rheumatologist. I'm thinking it has fallen on deaf ears as I've had no response. In the mean time I just do my best to keep mobile. I have to say, the worst thing for me right now is the depression. Seems to walk hand in hand with the disease.

    I am due to see rheumatologist in December. I'm not holding my breath. But we will see what he has to say.

  • They now want to introduce methotrexate into my mix. I’m terrified. Now on 3 different drugs plus steroids.

  • They are trying their best to get you under control Jules as they know you are desperate and want to get you moving and get the RA stable.

  • You must have worked out by now Jules getting a prescription that suits you is trial & error all the way! You're only just out of the starting gate & you must be getting the message ....there is no quick fix.

    The regime your Rheumy is suggesting is a normal progression for someone at your stage. Get the pain under control, then fine tune it.

    Please stop trying to micro manage your diagnosis.....you can't do it.

    I had 7 blissful years on Mtx...when I had to stop taking it I trusted my rheumatologist to work out the next step.

    If you don't trust your present rheumy team ...find another one. ..trust = success in my book.

    You must have read here, how even after 20 years RD can still be a roller coaster.....you must trust your doctors..or you'll be writing here this time next year & be no further forward.

    Try to relax ...that will help much more than all this fretting. Take a deep breathe & look forward to the Mtx working its magic for you....the hell what happened to others......but it won't work in 24 hrs.....probably more like 24 weeks!

    You will get there!

  • Hi Jules

    Are the other meds not working then? Is it not possible (if they are not) to come off them and just try the methotrexate, rather than having several drugs?

    I don't know of course, but I guess that would be something I'd be asking.

  • Same here, tried sulfasalasine, prednisolone, arava pain is same. Nothing works. Took off all meds. Recently i have tramadol only... otherwise i cant sleep at all. Now i think have try mtx... no choice:( too much pain and flare ups 24/7. Some nights i am up all night and nothing helps. Asked my daughter moving in for me, helps me with life

  • It seems that rheumatology stop helping you when meds no longer work. There are many in this situation that have turned to dietary treatment of RA and also instead of staring at RA symptoms have started with the help of a good doc looking at your body as a whole and possible dysfunctions that can be corrected and this way managed to calm the disease down. When meds are not working, or stop to work rheumatology has very little to offer. Hopefully this will change in the future.

  • Listen to your Rheumy team & understand every post on here won't apply to you..just read of other people's experiences & understand how diverse RD can be.

    All you can do is look after your symptoms & trust your doctors.....this time next year you will hopefully be in s better place. All this stress you are placing on yourself could well be 50% of the problem....so try to relax Jules , please!

  • I don't think there are any black or white answer's, like most thing relating to our bodies health its always going to be a bit of a grey area, is it always nescassary to pump our bodies full of drugs before we know for certain what is 100% wrong with us, also some of the meds are basically a form of chemotherapy so shouldn't we be expecting the specialist to be a bit more circumspect when he doles them out, no good them saying I'm not sure so will give you these and see what happens, is it.

    Try to find something less noxious, if that doesn't work then I'm sure that a month or so want make too much difference

  • .

    For your reflection 🤔 , Jules13:

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    . . . 🙇‍♀️ healthunlocked.com/nras/pos...

    .

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    🕵️‍♀️ 🔎 TMTOWTDI, YMMV 🤔

    .

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  • Jules, I've spent the last 10 months researching RA to the end of the earth. I feel like I know more about this disease than 99% of Rheumatologists. If you want to heal yourself up, please read into the stuff I am going to recommend in this post. It will set you on the right path to get to where you want to be.

    Simba speaks a lot of sense. I'll just try to build a bit on the stuff she has already spoken about.

    Humans and domestic pets are the only animals on earth that suffer from Allergies and Autoimmune Diseases. Have you ever wondered why that is?

    You are questioning whether you have RA or not and the answer is simple...

    You almost certainly have RA by medical definition. But what does that mean?

    In terms of conventional medicine, it means that you are displaying symptoms that fall into the label Rheumatoid Arthritis.

    But in Biological terms it just means that your body has fallen so far out of Homeostasis that your Immune System is malfunctioning to the point where it is desperately trying to bring balance back to your body.

    So what caused this to happen? These are the main things that can throw your body out of balance:

    1. Chronic Stress, anxiety, depression, fear, emotional pain, trauma:

    When we are stressed out, anxious, sad, depressed, nervous, fearful, our bodies produce the stress hormone Cortisol. Cortisol is highly anti-inflammatory, but it comes at a cost because it also stimulates the immune system. When Cortisol production goes back to normal, the underlying inflammation is no longer suppressed and this is when you'll experience a huge RA flare, terrible side effects from medications and feeling unsettled emotionally.

    Do you want to know just how important this all is in RA? Do some research on what Prednisone actually is...

    Checkout the Wikipedia page for it:

    en.wikipedia.org/wiki/Predn...

    Prednisone is synthetic STRESS HORMONE. That's right. The Pharmaceutical industry and conventional medicine thought it would be a good idea to give people a medication that would make them unhappy and emotionally unstable. This, in turn, worsens RA because chronic stress and emotional unhappiness stimulate the immune system and screws with hormone production. This is one of the reasons why Psychosis and Suicidal thoughts are a side effect of Prednisone.

    Do you need to take Prednisone?

    Absolutely not. I am not even sure how it is even legal to produce this "medication".

    Predinose is a strong anti-inflammatory, but being calm and happy is also a strong anti-inflammatory and it doesn't come with any of the nasty side effects like Psychosis and suicidal thoughts which only move the problems further down the line and prevent your body from healing.

    Dropping Prednisone is the first thing you can do to start making yourself feel better. You absolutely do not need it.

    One word of caution...

    DO NOT STOP TAKING IT STRAIGHT AWAY.

    There's a reason why your Doctor's tell you that they need to ween you off it gradually...

    If you stop taking it suddenly, your Cortisol levels will drop and the inflammation will come back with a vengeance and you'll have a huge flare. Work with your doctor to come off it slowly and then do your best to stay off it.

    A much better alternative to Prednisone is CBD Oil. I recommend 100mg - 200mg per day. It's expensive stuff but it works amazingly well. It actually does the opposite of Prednisone...

    Prednisone works by using the body's stress hormones as an anti-inflammatory. CBD Oil works by promoting homeostasis in the body and reducing inflammation in the brain which improves hormone function.

    CBD Oil has no harmful side effects and it has anti-cancer properties.

    2. Diet

    Diet is also another reason why your body can fall out of Homeostasis. Sugar, Gluten, Dairy, Alcohol, Nightshade Vegetable. All these foods force your body to work much harder than it was designed to work. Eliminate them and you'll see a massive improvement in the way you feel. It won't happen overnight but it will happen.

    You don't have to take these nasty medications for the rest of your life. But you can't expect anything to change unless you drive the change.

    Pain, nasty side effects, emotional unhappiness. It is a vicious circle. When you break the cycle you will be amazed at how much better you feel.

    My post will now get ripped apart by people who will pick holes in it. But please ignore them. This is not a comprehensive post. I could write a 20000 word book on RA from the things I've learned and only just scratch the surface. I have too much to say and not enough time to say it. Especially on a forum like this.

    Please go on a learning and healing journey. These resources will set you on the right path:

    First of all. Please read this book. I've read over 20 books on Autoimmune Disease and this one is hands down the best for explaining the role that Diet plays on Autoimmune Arthritis:

    amzn.to/2iRPtu4

    Next please read this book:

    amzn.to/2zTcOi8

    I cannot put into words how big of a role stress, anxiety, depression, childhood trauma, unhappiness and fear plays a part in the development of RA, Disease progression and symptoms. This aspect of the Disease often gets overlooked but Dr Gabor Mate does a great job of explaining how these factors impact that body.

    Next read this book:

    amzn.to/2z7XOja

    The Autoimmune Solution is pretty much the Gold standard at this point on giving a brief overview of all the things that cause Autoimmune Disease, what makes them worse and how you can start reversing them.

    Next read this book:

    amzn.to/2zVfjR8

    It was written by the head of Microbiology and Immunology at Stanford University. It will explain why you're feeling the way you are and how you have a lot of control over the way you feel with decisions you make every day.

    Next read this book:

    amzn.to/2A3yE39

    It was written by a Doctor who developed Multiple Sclerosis, another Autoimmune Disease. She did a lot of research around Autoimmune Diseases and managed to reverse her MS.

    I also strongly recommend that you dive deep into the following free resources.

    Please look into the work of:

    Dr Chris Kresser

    Dr Gabor Mate

    Dr Rhonda Patrick

    Dr Amy Myers

    Dave Asprey

    Dr Terry Wahls

    Aubrey Marcus [for emotional wellbeing]

    Dr Mark Hyman

    and many, many more.

    Before I end this post I also want you to know that almost every modern disease is caused by chronic inflammation. This includes:

    Cancer

    Autoimmune Diseases

    Asthma and Allergies

    ADHD

    Autism

    Epilepsy

    The list is endless.

    Finally here is an inspirational video talking about how effective CBD Oil is in the treatment of Chronic Epilepsy. Epilepsy is caused by Chronic Inflammation in the brain:

    Why is this relevant?

    Look into the role that the Interleukin 6 inflammatory cytokine plays in RA:

    en.wikipedia.org/wiki/Inter...

    Chronic stress and childhood trauma is HIGHLY IMPLICATED in the development of RA and Disease Progression. CBD Oil is extremely effective at reducing the production of IL-6 in the body.

    I've had a good amount of success in life and one thing I've always learned is...

    FOLLOW THE MONEY.

    All the stuff I have put in this post will set you on your path to healing. But I can assure you that Pharmaceutical companies are also on the same path so that they can earn money from these new found discoveries...

    The Pharmaceutical industry and currently in an arms race to develop specific strains of Probiotics that will reverse Autoimmune Diseases and Cancer. If you look into this in more detail you'll see that over the last 5 years all the big Pharmaceutical companies have been buying up small Pharmaceutical companies that specialize in the research and manipulation of Bacteria and the Gut Microbiome.

    All the stuff I have put in this post influences the Gut Microbiome, including how you feel emotionally.

    Please research all this stuff in more detail and you'll find the answers that you are looking for.

    You can reverse your RA. It won't be easy and it won't happen quickly, but it can be done.

    Good luck.

  • Always uplifting to read your posts😊👍🏻I can only imagine what wonderful support you are for your wife. I hope she is doing well.

    All the best and come more often with your thoughts😊xx Simba

  • Thank you so much Simba, I really appreciate it.

    I really enjoy reading your posts.

    We are still deep down the Rabbit hole of RA and we are learning more and more about the Disease every week. We do a lot of experimentation and we make a lot of mistakes.

    It is so complex, but I still feel like it can be worked out. It's not easy, but it can be done.

    Right now my wife is down to just 15mg of Methotrexate weekly. Not taking any Steroids or NSAIDs and pain is manageable. Somedays there is no pain at all. We have also learned how to control her flares. If she has a bad day, there are things we can do to get her feeling virtually no pain the next day.

    I feel like we have a lot of control over the Disease. We can control how she feels on a daily basis. We can't always ensure she won't have bad days, but they are minimal and when she does have a bad day, we can get her back to a good place very quickly without the need for medications.

    We have identified two clear triggers for bad flares:

    1. Dairy, Gluten, Sugar.

    For example if if she eats something like Pizza, she won't be able to walk for 2-3 days.

    2. Stressful times

    If she has a particularly stressful few days in work, she will feel fine during the period of stress, but then it will catch up to her and she will have a huge flare several days later.

    Because we are aware of these factors we have a lot of control over how she feels everyday. Our diet is extremely clean and we try to minimize her stress as much as possible although it's not easy because she works in a high pressure job.

    We put RA into remission one time, but brought it back after trying to taper off Methotrexate completely. We were successful at being in remission for about 4 weeks with zero medications, but we ate some cross contaminated food with gluten and it brought RA back with a vengeance. We haven't been able to turn it off since.

    We are getting close to figuring it out though. I'm confident that within a couple of years we will have cracked the RA code.

    One thing I have learned...

    RA is merciless.

    Think you feel fine? Have a stressful day and the pain will come back.

    Eat some food contaminated with Gluten and the pain will come back.

    There really is no room for error. Trace amounts of trigger foods cause an issue and disease activity spikes with stress and anxiety.

    BUT

    Knowledge is power and we are using this knowledge to heal her up.

    My life's goal is now to figure this thing out once and for all and then use everything we've learned to help other people.

    It's not going to be easy, but there are millions of people that are suffering needlessly.

    We need to do more to spread the information about diet and mental wellbeing.

    I wish the NRAS did more to give people specific information on how they can influence the way they feel on a daily basis.

    It literally is a matter of life and death.

    We need more mainstream organizations to stand up, be Maverick, be bold, be brave and give people the latest Scientific research so that they can use it to improve their quality of life. Cocktails of medications will not cut it.

    Arthritis Research UK, NRAS and the Arthritis Foundation etc are burying their heads in the sand. It's time to stand up and educate people.

    These are interesting times. The future is already here.

  • Thank you for bringing a fresh and hopeful side to the fight against this disease. When I say to people I KNOW in my gut that this disease can be cured, we just don’t have all the pieces yet, they look at me with pity and as if I’m in denial. Maybe I am but for some people, the hope of cure actually drives us on. The alternative- and hugely tempting when in a flare up - is to curl up in a ball and give in to it.

    Mental health is a massive player in chronic disease and hope for change is keeping me going at the moment as I battle a horrendous flare (after coming off MTX I might add - I’m now back on it!).

    I’m going to look up the books your recommend and watch the video. I have nothing to lose.

  • Well that’s so interesting. My Occupational Therapist pretty much has said the same as you. Stress is copes with at the time but then bang, the next few days you go downhill. I’ve been trying to cope with completing on my new house. It happened yesterday morning. Yay. But today I feel like I’ve gone back to square one. Utterly exhausted. Everything hurts.

    I tried giving up gluten and yeast for a month. Felt less bloated for sure but didn’t affect my pain or exhaustion. So I don’t beat myself up if I have the odd piece of bread. I write a detailed food diary and nothing flares out at me that one day is worse than another. Dairy I have cut down on too but not noticing anything significant really. Again, as many many have said on here, what works for one person doesn’t necessarily work for another. I eat clean I live clean but sometimes it doesn’t help the pain or inflammation.

    It would be wonderful if there was one cure for all of us but it doesn’t seem likely. Thank you though.

  • Oh wow

  • I have learnt so much by reading your post, thank you for sharing. I'm sure your wife is benefiting from all your knowledge. I would like to have more help and information, but I'm sure Admin would remove my email address, but I will post it in case. awalsh50@hotmail.com

  • Hi Jules,

    I’ve read all the replies and I agree that we can only ever share our own personal stories and it does get so incredibly confusing. Perhaps this is testament to how little-understood this disease is.

    But I wanted to say I admire you’re fighting spirit - don’t surrender to this disease! It is a long road of trial and error and having an open mind, trusting the docs on their bit and being very, very patient with our bodies - will all help.

    My belief is that the medications absolutely have a role to play; it’s just a case of finding out what works best for you, and you can only know that through patient trial. No one can predict what your body will respond best to.

    It’s slow and frustrating but I got myself into a real mess by thinking I was in a natural remission (joints great, fatigue from MTX awful) and tapered off MTX, only to have a massive flare up. I felt humiliated and defeated and was on the verge of a real depressive state - which is not my personality at all. I felt like I was staring at death itself and all the feelings of the unfairness of the disease came flooding in. The minute a sense of helplessness comes, we start to lose our fight. So keep fighting!!!

    By feeling so fatigued all the time I haven’t had the motivation to try serious non-medical interventions yet and so I decided to accept all the medical interventions offered (including MTX, Sulphasalazine and steroids) to get me back on an even keel long enough to try some non-medical help (ie yoga, diet, exercise, supplements).

    I’m 18 months in and it feels like a lifetime to me but people here have been on this road for far longer and really have tried everything available. But whilst I learn from their stories, I am very much on my own journey and if you feel something hasn’t been diagnosed correctly, you’re absolutely right to question it and test it. And I say that having tested MTX and lost!!! It doesnt mean I won’t test it again.

    Sorry for this ramble, I just recognised your anguish in your post because I’m there too 😊

  • .

    Bingo! 👍 👍 👍

    .

    Nailed it ☺️🔨 , hope-always316! 😃 🤗

    .

    🙏 🍀 🌺 🌞

    .

  • I guess I’m really struggling because I can’t survive not working more than another few weeks. And yet they are going to start me on methotrexate next week so I’m so scared that my next few months will be surviving that drug.

    And all my savings now have gone into buying my house. I have nothing left. No money. Only a few thousand put aside for a new boiler. So it’s a choice of new boiler vs trying to work a few days.

    I tried working one day last week and I was in bed for 2 days afterwards because the pain was so bad and was exhausted. So I’m supposed to move in to my new empty house next week but I feel so scared and low and ill that the prospect terrifies me and what should be such a happy time is blotted by anxiety of how I can survive on my own with no flooring or heat or furniture.

    I was happy for a nano second before fear took over again. With no money coming in I honestly don’t know what to do.

  • I feel for you - sounds extremely scary. Would a lodger help? I had a great tues - thurs part time lodger for several years (didn't want a full time one as not enough space for another person's possessions). Other people have exchanged accommodation for diy.

    Such bad timing to be struggling with this disease too. But it will get controlled, so please try to hang on to each nano second of happiness.

  • .

    🤔 Who can lend you a helping hand 🤚 in this time of need?

    🤔 Is it something you can actually do 'all by yourself' 🕴?

    🤔 If it's not something you can realistically do by yourself, who are the people you can ask for help — even if you think they'll say "no" 🚫 ?

    .

    .

    Consider asking each person down the list 📝 — even if each says "no" 👎 — until you receive a "yes" 👍 .

    (Sometimes helping hands ✋🤚 come from the least anticipated places/ people in our 'hour of need'.)

    .

    .

    Kindly 🙏 , do not be embarrassed 😳 or fearful 😰 or whatever 'hindering emotion' you might feel that makes you hesitant or reluctant to openly ask for help from those around you. 😌

    .

    If you need direct, person-to-person help, kindly consider requesting it, Jules13.

    If they can't help you, they may know of someone who can. 🤔

    .

    Asking the question aloud — amongst your circle ⭕️ of family, friends, acquaintances — gets the ball rolling . . . 🏐 . . . 🏐 . 👍

    Gets things moving . . . ♻️ . . . gets wheels turning ⚙️ 🌀 . . ⚙️ 🌀

    .

    If they can't help you, they may know of someone who can. 😊

    .

    Otherwise, by not uttering a peep 🤐 🐣 to individuals within your circle ⭕️, none of them will know the depth of your actual need.

    You have to ask, in order to receive. 🤔

    Word will get out 🗣 💬 . 🗣 💬 .

    Help will surface. 🙏 🍀 🌺 🌞

    .

  • Ramble away. I have the odd day where I’ve slept really well and have a less pain and think, oooh this is it, I’m getting better. But sadly the next day I’m back to square one. It’s been 4 months since diagnosis and they still aren’t close to getting my chronic inflammation under control. X

  • With all due respect it seems Allsop does not have the RA and his wife does. I appreciate he's read far and wide to try help and get her off RA/related meds. It's not that easy when you have the RA yourself and you are desperate for something to work when you've been housebound and immobile. That's why people take the advice of their rheumatologist who has been studying and researching for many, many years. I don't like medication either and I have eliminated many foods and still do. I am in a decent place at the mo with a biologic infusion. I have had a life where there has been a lot of stress the past ten years with family members ill and unstable and that has had an affect on my RA. I certainly did not have any childhood trauma whatsoever .. I had a perfect, idyllic life and no problems at all until 35 then came very intense stress from a job and more recently family member illness and death. You can't just shut off from all sources of stress unless you are pretty much zen'd out all the time or heartless. Agree stress and cortisol are major inflammation triggers but we are all different and I think as HH and AC said we don't all fall into the same category or situation. So Jules don't think everyone's recommendations are going to be your answer. Someone might give some great advice which resonates with you but it won't all apply. Don't let the posts you read panic you and think you are doing something wrong or their way is gospel. I think we have to try help but respect that we can't force our ideas on anyone. Sometimes there is so much information and confusion it adds to the stress and there is always the reminder of feeling so bad rather than trying to relax. xx

  • What a commonsense, well written reply Julie, I echo all you say. Please Jules, don't take one person's experience to necessarily be that of your own. For example, I know that I can manage off MTX for up to 3 weeks, any longer & my body rebels, my RD starts to rage again not because I ate something different or had anything rogue but because I was without the med that controls my RD, it means I need it that's all.

  • Jules. Are you entitled to any benefits? PIP? Might help if you weren't so worried about money.

  • Just had my face to face interrogation (I mean interview) by PIP. so we shall see what they say x

  • Hi Jules had mine this week too, lovely lady but felt paranoid that was ploy to make me say wrong thing, horrible but over! Wish you well and feel for you on finances; racking my brains over how to have this, return to work etc. do you, can you, work from home? I know you're graphic designer, or are hands too bad at mo'? Might be worth opening credit union account too, they are so much cheaper for borrowing if worse came to worse and will give you

    repayment holidays of up to 3 months. I just did this! No easy answer but wish you well x

  • Can’t do my design right now at all because it’s all in my right hand.

  • Thank you xxxxxx

  • Hi Jules.....I started reading through all the replies but there are too many!! So I may be repeating something that you've already been told 20 times. Jules....I had to try FOUR different DMARDS over four years before I was finally put on biologics five months ago! I was just like you....felt like utter shit - plus the pain never left me. You need to contact either your rheumy nurse or consultant. Phone the secretary and cry, plead, beg to be either seen as soon as possible or have a phone appointment asap. DMARDS can be utterly evil and at times I was actually close to suicide because of the pain, symptoms and the damn side effects of them. Don't be afraid of asking for help. Also, if you don't have any joy in getting an appointment, go see your GP and ask for a second opinion. Thats what I had to do. The first rheumatologist I saw finally said there was nothing wrong with me despite blood tests/scans/ X-rays etc ALL saying otherwise. he just hadn't bothered to check the results!

    I read in one of the earlier posts that this IS a life changing disease and it is...unfortunatley. The effect it has on your body is bad enough but it can also affect your mental health. Chronic pain is VERY depressing. And as someone said...it's like a form of grief/bereavement when you're diagnosed and coming to terms with it. Your GP needs to be on board with you and hopefully you've got a good one. Don't be afraid of seeing her/him as often as you need to. I started on a very mild anti depressant last year - Dosulpin 25mg - and its REALLY helped.

    This forum is brilliant so keep coming back for advice! A lovelier bunch of fellow sufferers you'll never find anywhere else! And when you can....laugh at this damn disease - shout, swear ( my profanity level has gone through the roof over the past few years...LOL!!!) and cry when you need to. And research, research, research....get to know this damn RA and what can be used to slap it in the face! If you need to PM me, just do it! xxx

    Ps...it's a bit late in the year but one of the things I use everyday - when they're active - is whacking my hands with stinging nettles ! It hurts at first but the relief it brings beats any painkilling drugs....and it lasts all day! People look at me strange when I'm out with my dogs and whacking my hands in a bunch of stinging nettles!! Also...try tumeric and pepper capsules. they're very good and I've been able to reduce my tramadol intake because of them. Take care Jules x

  • Haha. Replace one pain with another is an interesting theory. I might roll around naked in the nettles in the woods behind the house! Yes I take curcumin, and lots of other good stuff. X

  • You can't beat a good roll around naked in the woods with some nice healthy nettles...LOL!! xx

  • Jules....just had a quick look at your post about finances. PM please when you can. I was self employed and used up most of my savings too. You need to get on board of this soon xx

  • Have messaged you x

  • I only had aching hands,waking up with them claw like every morning, mentioned it in passing at my well women check at my docs. Nurse decided to do a blood test andvit came back positive for R A. Had a futher test at hospital and was told if the level was above 200 hundred it was RA but mild, my result was over 600 hundred. Glad I mentioned it now. That was over 9 years ago and I dread to think what I could be like now if I hadn't mentioned it.

  • I understand your thought process here as I'm guilty of a similar process. I'm 41, initial diagnosis was made by a primary when I was just 18. He stuck me on an anti-inflammatory, gave me cyclobenzaprine & called it a day. For a decade I was pretty comfortable. No serious flares, etc. Then at 29 all hell broke loose. I was then sort of rediagnosed by my Rheumatologist. He agreed with the RA diagnosis but added Fibromyalgia and lucky me SLE to the list. I've been on so many treatments and nothing makes too much of a difference. I'm constantly thinking what if they got out wrong. I think it's a normal thought.

  • Bit about diagnosing flavour of autoimmune disease here that may interest you, Scarletmama (if not already aware of): healthunlocked.com/nras/pos...

  • Have your thyroid checked!!! I have RA and I had a thyroid removed. Ever since, my body is a wreck inside. I feel like a truck passed over me every morning and many days, all day long. I have learned to get used to this monster inside killing me with pain, needles in my joints every time I move, stiffness in my muscles, flulike symptoms, you name it! But I push myself and I try to win even if I know I really lost. I paint almost every day to distract myself from the pain and it really helps because is my passion. But my point is, get your thyroid checked! Good luck and I pray that you feel better! Wishing you the best!

  • HU's Thyroid UK forum is here, if interested in additional support & information, Jennicel: healthunlocked.com/thyroiduk

  • I had a thyroidectomy 26 years ago. Have my blood tests every 3 months so defo not my thyroid. X

  • I've found that when I've seemed to get nowhere with the rheumatologist at of times when they have been slow to react to be or at a bit of a standstill or what to do next that to write/list my concerns for my well being both physically and otherwise have had the best results of being noticed. I think you may have written already to your doc Jules but write to the rheumatologist if you feel there at major areas not bring assessed or not helping you. I've often left a typed update on all I felt needed addressing to remind them and in more detail. Il

    I do think they will say that as your diagnosis was mid August that it's still early days yet for things to settle in general. Of course no one wants to hear that and wants a fast recovery from feeling so awful. When I think of my early days it took quite some time to get under control with all my sore and swollen, seized joints even after my SSZ started to talk good effect. It didn't just come right overnight or not even for about six months although it was improving a lot after four. It is so hard when you are trying to fathom out what the heck is happening and even more so for people who live alone and without support.

    I've said this before but the thing that saved my sanity and got me moving and fitted was two to three physio seasons a week including wax hand baths and then physio sessions. It gives you a lot of confidence and the phsyio gives you a lot of morale boosting usually! Well mine did as he was fab. Please ask your rheumy nurse/rheumy for a referral. I think it could help a lot. They don't push to as if you are training for the Olympics! They go at your pace at first then help you increase your exercises. Hydrotherapy is great as your joints are all supported of course in the water. You don't have to be a swimmer .. I am an awful swimmer these days. They give you floats and foam noodles so you won't go under!

  • My physio won’t touch my hands yet. She says they’re too tender and inflamed. Trying to get that sorted first.

  • just catching up after wks off line - so sorry 4u Jules; hope things improve. xx

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