recently diagnosed, scared of medication

Hello! First and foremost, I am so happy to have found this website- I have been feeling very alone, scared, and confused since my RA diagnosis. I am a 31 year old female and a new momma to a one and a half year old.

About 6 months ago I started experiencing pain in my knees. When that subsided, my left foot began to hurt. I went to a podiatrist, who told me I had ankle instability and had me wear a brace. After wearing the brace, I ended up with worse pain and at urgent care. Urgent care ran some x rays and gave me some crutches to walk and referred me to another podiatrist as they expressed that my x ray came back normal. Long story short, after three months of pain, several different diagnosis (planter fasciitis, tendonitis, etc.), and no improvement- only worsening, I took it upon myself to go to a rheumatologist (at this point, I wasn't able to walk without excruciating pain in my left foot).

The Rheumy ran blood work- it all came back negative for RA protiens. We did an MRI which showed edema and erosion in several bones and tendons (however not enough of them to fit the RA diagnosis) He also ran the VECTRA test in which I scored 55 (high?). This leads me to my first questions: What does this mean, could I have RA with no markers in my blood? With pain in only one concentrated area (non symmetrical)?

My Rheumy decided to treat me "aggressively" although he stated several times that I was not a "text book" case. He put me on Enbrol and Methotrexate (not sure if I spelt these correctly). I saw results within the first week. I stayed on these meds for about 5-6 weeks getting the injection weekly. When I started to get better I took a 5 week break. About a week ago, I started up with pain in my left heel(always on left side)- my doc suggested that it might be the beginning of a flare up and put me back on embrol. I feel better, yes, but still a little hesitant to admit that this diagnosis is the correct one.

I am also very afraid of the drugs that I am taking. I have done a lot of research all pointing to Enbrol being a culprit to cancer and increasing the chances of cancer dramatically. I can not stop thinking about this. It brings me down all the time thinking that while I am healing one thing, I might be poisoning myself in a more terminal way. What are all of your thoughts about taking these medications? Any success stories of being able to get off for an extended amount of time? What have been your experiences of being on these meds long term?

I am so sorry to ask so many questions. I am on a quest to become as educated about RA as possible so that I can feel good about the decisions that I am making for myself.

Thank you all in advance.

47 Replies

  • You have come to a very good site nras is my help line we have all felt like you at some point welcome

  • So sorry that you have been afflicted in this way. I think it's much easier if you have a clear-cut diagnosis as it makes the choices more straightforward. But RA is a slippery beast and you can have it with few or no blood makers.....

    Anyway, the drugs. I swear by them as they've given me my life back. I've been on them for 6 years now and although I've tried to reduce down a couple of times it has never worked. The way I view it is that the risk of heart disease and strokes with uncontrolled RA is quite high, so while the drugs have risks they also help protect against other things (breast cancer is lower for women on MTX too). And walking along a traffic filled street is a cancer risk, so it's not something you can avoid in 21st century life.

    It's a personal choice, and a difficult one, but I'm happy that I made the choice I did.

  • Thank you so much for sharing. I didn't know about MTX and breast cancer- that is very interesting. I'm glad to hear that the drugs helped you obtain better quality of life, being in pain and disabled is so hard. Thanks again for sharing, its such a relief to have conversation with those who have had their own experiences with RA.

  • Dear Dshina I know how you feel. When first diagnosed; I spent a week in bed with depression. That was 7 years ago. Main thing is a top-notch Rheumatologist. Drugs stop the progression, deal with pain, & are necessary. Get these right and you will cope well. Good luck; you are not alone.

  • Hiya & welcome dshina. Sorry to hear the bad start you've had, it seemed excessive but you've no need to feel alone or scared any more, not now you've found us.

    I'm presuming you're in the US? I ask as we don't to my knowledge have the Vector test here in the UK (NRAS is a UK based charity), we very much welcome overseas members but sometimes tests, meds & treatment can vary as we have different Rheumatology guidelines. For example MTX is generally considered to be the first line treatment here, we don't haver access to anti-TNF's or biologics such as Enbrel until we've not responded well to at least two DMARDs (MTX is a DMARD & unless for good reason had to be one of the DMARDs tried) & two DAS 28 scores of 5.1 or above one month apart. That said I'm sure if our US members know of or have had the Vectra performed & understand the scoring I'm sure they will be along. We of course all have some form of autoimmune disease, we're no different there!

    I do find it odd that you had a break from meds after only 5 weeks, we have a chronic disease & treatment is ongoing so it's not really surprisingly once you took the meds away you flared. Did your Rheumy not explain that in order for the meds to work they need to be taken as directed? We can feel well & be managed well on the meds we take but we do need to take them to control the disease.

    In a way I think it is unfortunate that your Rheumy chose to hit you do hard (with the meds I mean), if you've not needed more than basic pain relief before it must have been one heck of a shock & difficult to come to terms with. I hope I'm wrong but I fear that medical insurance may have had some part to play in this, Enbrel is an expensive drug & it's not generally used as first line treatment, there are quite a few DMARDs which can be tried first & many of us don't need to progress to anti-TNF's or biologics for a good while, some never do if they respond well to DMARDs. I'm seropositive, diagnosed in 2008 & I've taken MTX for nearly 7 years & do well on it. Of course not everyone is the same neither is the path of RD but the objective is the same, to achieve remission.

    None of the meds we take are without risk of side effects or possible other problems but they are specialist meds for a disabling disease. Be assured each available to our Consultants have been trialled for years & only then licenced for use for RD & all the information within the patient information leaflet is for information only & not suggestive of you having or getting any of the findings during trialling. If the risk of adverse effects or cancer was too high the FDA in the US or the MHRA in the UK would not allow them to be marketed.

    I am sorry for your experience so far, I hope the more you understand & learn from being here helps you to consider your options. I also hope you receive some help & advice from our members who are more au fait with your meds & guidelines & can share their experiences with you.

    Take care & I hope to see you around, if you need help or advice or just experience there's always someone who'll respond. :)

  • Thank you so much for taking the time to respond. I feel better already in knowing that there is a community out there (even though it is half way around the world ;). This is hard, but knowing that there are others living a healthy life with this condition is very soothing. Thanks again.

  • Hi and welcome to our site. I am sorry to hear you are suffering at a young age and with a little one to look after. Like you I am on embrel and mtx but like nomoreheels said I was only given embrel when treatment on 3 dmards didn't work. Also like you I was very worried about the effects of these drugs. Recently I had a 5 week break due to infection and I went down hill very quickly. I wouldn't want to be like that for the rest of my life as I was incapable of walking etc. I now try not to worry and we are closely monitored with regular bloods etc. I would love to think one day I won't need the drugs but I am just aiming at the moment on being pain free and mobile. It is such a worrying and confusing time and I wish you well. Maybe when you read posts on here and get a better understanding you can ask more detailed questions at your next visit. Keep in touch and we are here when you need us x

  • Hi Dshina, welcome to NRAS. This is a wonderful charity and a great website, as you'll find people here who are on the same journey as you, or who have experienced the same situation as you find yourself in currently, and who are so supportive. Unfortunately, RA is a very slippery diagnosis, and blood tests can either confirm the diagnosis for sure. Sometimes, the specific protein and inflammatory markers can be negative, but the symptoms may be ongoing, or sometimes the markers can be raised enough to confirm the diagnosis, Unfortunately, RA is a chronic condition, so flare ups are very common. I am guessing that your joint damage must be bad, if your rheumy has already started you on enbrel, as here in the UK, as nomoreheels and lainee have mentioned, that the normal protocol here, is to try dmards first, and then then if those don't work, only then are biologics prescribed. I was unfortunately diagnosed with severe RA, about 6 years ago and sadly, my knees, ankles and lower spine had already become badly affected by the time i was diagnosed and carrying out daily tasks had become a nightmare, so I can completely understand what you are feeling.Having a confirmed diagnosis does help, but sometimes its more about controlling the symptoms and the pain, that is important. I was on enbrel for about 6 months, it seemed to be working, as i had started feeling better, but then I had a bad allergic reaction to it, and so i had to come of it, but it is a great drug, and so is methotrexate, I was also on that for a while, until I also had an allergic reaction to it, but these 2 drugs have helped so many people. Also, its better to keep taking the medications, even when you do start feeling better, because if you take a break, thats usually when flare ups tend to occur, at least that is what rheumy's here in the UK advise. Have a chat with your rheumy if you are worried about anything, or if your anxious about the medications. unfortunately, enbrel does come with its own side effects, so get your rheumy to discuss the side effects with you, as the rheumy is normally the best person to decide the best course of treatment. That is what they are there for after all. Please don't hesitate to ask any more questions or to vent about your worries, as there is always someone on this site, who can help you out, The medications have definitely helped me, as they have given me a chance to live my life as normally as possible, without them, I would have been in a wheel chair a long time ago.

    I hope this information helps, and i hope that you start feeling better soon. x

  • I'm not sure where you found that Enbrel "increases chances of cancer dramatically". I think the early research suggested that there was an increased risk, but as more people have been using it and they have more data, I am pretty sure the risks are now not thought to be anywhere near as high, and also only for specific groups of people (children and adolescents greater risk) and specific types of cancer (blood borne cancers and not solid cancers). The vast majority of people taking the antitnf meds like Enbrel do so with absolutely minimal or no side effects or complications and with huge benefits in both disease control and general wellbeing. Bear in mind also, that untreated and out of control inflammation can also have very high risks of serious consequences, so it is a matter of balancing risk - bearing in mind that good treatment will give you a much better quality of life.

    As far as whether you can have RA with no markers, - yes you can, but you can also have a different form of inflammatory arthritis - spondyloarthritis. For what its worth, plantar fasciitis is very commonly seen as part of spondyloarthritis, and the inflammation in spondy is usually asymmetrical (whereas RA is usually symmetrical). Don't get hung up on the label at the moment though, as what matters is that inflammation is kept under control.

    (spondyloarthritis is the name that covers a group of inflammatory arthritis including ankylosing spondylitis, psoriatic arthritis, reactive arthritis, undifferentiated spondyloarthropathy, etc)

  • I am a 35 yr old with 3 kids. I have RA and Lupus. I am on a new journey after a 4 year journey with TONS of hard core medications. Some of the same ones you are on. I stopped them in January and have started a gluten free and sugar free diet. It is making a huge difference. I never thought diet was linked to my inflammation, but it sure is! May I suggest a detox? I started with a 22 day gf and sugar free detox. Best thing ever. Not easy at first, but once you start to feel better it gets easier. Good luck and lets get that Vectra DA score down! ;)

  • I am so sorry to hear that you have struggled with both RA and Lupus. Do you happen to be familiar with the Vectra DA test? If so, I am a little confused about what exactly it means to have a high score (especially with no blood markers). Would you happen to know?

  • I've had a quick search & found this link with a download to check your score, it may be helpful?

    I do think at this stage you really need to have medical help to work on the disease & once it's controlled then look consider looking at different ways to help yourself. It's particularly important with the result of the MRI already showing you have erosion.

  • This makes me thankful we have the nhs in the uk . Xx I get jittery looking at the payment methods on the site, although it looks very professional and that you have a lot of access to your results and tests X

  • I only had to pay $25 for my tests. If you call them, they will help with costs.

  • I had a little look too, as curious about everything to do with RA, and it includes some interesting tests. In Europe we tend to use a different method to evaluate disease activity - needless to say one that doesn't cost an arm and a leg! It will be interesting in years to come to find out which helps manage the disease better.

    Anyway, it seems clear that it is being promoted as a way to monitor and manage the disease not diagnosis it. So you do need to push your doctor about how he has come to this diagnosis.

    Yes you can have no blood markers like RF and anti-CCP (which aren't part of the VECTRA test) and still have Rhematoid arthritis, as these are two very different things. Basically the VECTRA test shows you have something very active going on, and the skill of the Doctor is to put all the clues together and determine what the most likely root cause is, and what the best course of treatment would be.

  • Def look at the vectrada website. It gives you everything you need to know! Also, my sister and I both have RA. I am positive and she is negative. Only a very low percentage of people with RA test postitive. I have a bog I started if you are interested. if you would lime to read. I am new at it but started it to help others on their RA journey. ♡

  • It's the other way round Beth, seropositive is the more common diagnosis. On the US Arthritis Foundation site it suggests 60-80% of diagnoses are seropositive Arthritis Research UK estimates 70%.

    I've been unable to find any evidence that the Vectra DA test is accepted or available to us here in the UK or the rest of Europe. It does seem that the manufacturer presented 'new data' at the EULAR annual meet in 2013 but nothing to say it was taken up.

  • Diet does play a large part in inflammatory disease because so many foods cause inflammation in the body. I am interested to hear that a gluten-free diet is making a difference as I am contemplating giving it a try. Gluten is reported to cause low level inflammation in the body but I daresay every little does contribute. Certainly, fat people who eat junk and do no exercise have high levels of inflammation.

    I have noticed that my symptoms flare up after a few days of drinking rather more alcohol than usual. Alcohol does, of course, cause inflammation in the body. I daresay that if the underlying disease were not present, this would not matter.

    It all seems to make a nonsense of the blood tests. An obese person who eats junk, smokes and drinks is going to have very high levels of inflammation, and these will not accurately reflect the severity of RA. A slim person who exercises, eats healthy non inflammatory food will most likely have a normal or very low inflammatory blood test reading - but still might have RA or even severe RA.

  • Just to say hi as loads of great advice from the others xx

  • long story short but I was diagnosed with ra a while back started taking meds and they only worked for a short amount of time so I looked into the whole diet thing and healing the gut and removing any toxic products from my skin, home and drinking tons of water etc and then for whatever reason I had a bit of hiccup think it was stressed related and maybe eating to many potatoes etc. So I have found a integrated health practitioner who is a rheumatologist but does not believe in putting his patients on meds well unless he really has to and am seeing someone in the US.

    At the end of the day we all need to what is right for us there are pros and cons for being on meds and you need to do a bit of research but I will say this all my friends who have had ra and I have met a lot of people who have suffered with ra who never went on drugs but found someone straight away to help heal themselves naturally reversed there symptoms.

    I would recommend reading a book called the medical medium and listening to some of the paddison program podcasts. Don't think you need to pay for his help you can change your diet on your own and If you want help with your diet then find a good dr who will test for food allergies etc.

    Also if you have any stress / negative energy in your life find a way to get rid of it. Think stress can be a big reason why we get sick.

    Whatever you do if that is taking meds or not do what is right for you and makes you happy good luck.

    ps no matter what you do just make sure you do some exercise every day keep your joints as strong as poss.

  • I have a friend with RA who believed she could heal herself naturally without drugs and instead of getting better she got so bad that she is now vertually imobile. The RA worked it's way through her whole body and there was nothing to stop it. Her sister and mother begged her to try something but she wouldn't.

    I am not chuffed that I have had steriods and gold and god knows what else pumped through me as a child but if I hadn't I wouldn't have learned to walk and when my spine collapsed aged 12 I would probably have never sat up unaided again. I certainly wouldn't have been able to carry and give birth to my daughter.

    I am not dismissing the possiblity that something might help for someone other than medication but when people talking of "healing themselves naturally from RA" I feel like it underminds how serious and harmful the condition is.

    If I saw a specialist who suggested my RA could be managed through diet alone I would be sure that s/he was a fake and probably report them through the relevant body.

    Rhematoid Arthritis is not caused by stress. This explains rhematoid arthritis

    Diet, excercise and positive thinking can all help RA but the reality is for the vast majority of people with it drugs are a neccessity. Think about it, if RA could be cured with tumeric don't you think rhematologists would be handing out tubs of it to all of us? Of course I appreciate tumeric is just one example.

    I mean no offense to anyone but I really felt I needed to make these points and I have.

  • And very good points they are xxx

  • pinksugarmouse just very quickly I just want to clarify a few things if someone wants to go on medication then that is there choice and I firmly believe there is a time and a place for meds however as far as reversing ra symptoms. The reason why I say reverse instead of heal is because I am not a fan of saying one can heal themselves for many reasons.

    Anyway lost story short meds don't work for everyone I mean in my case they only worked for a while and when they stopped working well you can end up in worse situation in my experience than when you started on the meds. Yes being on meds can stop ra symptoms etc etc but in other cases these meds can end up damaging our gut and our microbiome and all that crap.

    Also do reverse symptoms of ra when they go down the diet path but others like me want to find a good integrated/functional health practitioner who will help them on there healing journey.

    Functional health is becoming more and more popular and if you can afford to go down this route I would say give it a go what have you got to loose. Also functional health dr's will put you on meds if you need to go on meds but they just don't agree with the whole medical industry. Also they are trained bodys.

    Stress causes a great deal of damage to his body. If you don't believe me do some research on this one of the dr's I have seen spoke about his mother having breast cancer due to the stress that she had in her life. Yes stress is not the only reason why we get sick but like I said it can cause a great deal of damage to the body.

    I don't think it is fair on dshina to continue on with this convo at the end of the day she needs to do what is right for her and she does not need to be scared about what being on drugs or not being on drugs will do to her.

    Also even though it can take a month or two to three years if you to reverse ra symptoms if you go and see an alternative health dr .. even if you don't do this at least think about talking to your dr about herbs etc that you can take whilst being on these ra drugs. Also please can we try and not bash going and seeing an alternative health dr I don't think we should knock these things until we try them after all our health is our wealth right.

    Take care of yourself

  • Kalel stress does not cause cancer

    If any doctor is telling you this then they are either not a doctor or should be struck off as a doctor.

    Nothing can reverse the damage of RA, the drugs we are put on reduce the inflamation which slows down the damage. But once the damage is done it cannot be undone. There is currently no cure for Rhematiod Arthritis, not drugs, not herbs, not happy thoughts.

    We all have to live with this awful disease and make difficult decisions about what drugs we take, what side effects might we get and what should we be willing to risk. It's not easy and I understand you wanting to find treatment from other sources.

    But please Kalel be careful because any doctor telling you that stress causes Cancer and RA can be healed with herbs is not to be trusted. Best of luck. Remember we are all on the same side. XX

  • thanks for your concern but we will have to agree to disagree on a few things and leave it at that .

    Also in regards to herbs etc I am talking about medical herbs that heal the gut etc.

    My rheumatologist is a functional health practitioner and I am really grateful I found him because along with the help of him and someone I am seeing in the USA I am slowly reversing my ra symptoms.

    Also yes if you have ra damage there is not much you can do about that but as both my personal trainers would say if you keep your joints strong and exercise every day .. even if you do a small amout of exercise at home then your muscles will be strong and you have a less of a chance of having damaged joints.

    You can believe what I am saying or not it does not make any difference to me but before saying things like ra can not be reversed please do some research and talk to a decent functional health practitioner. There is a reason why functional health is also becoming more and more popular because people like me don't want to be on meds for the rest of our lives actually if I had known what I know now I would not of waitsted my time taking drugs that have done jack crap for me and damaged my gut etc etc.

    Anyway I think I have said enough on this post we all need to what is best for us and what makes us happy being on meds and seeing a normal rheumy does not make me a happy bunny and that is why I changed dr's.

    Look after yourself. Take care.

  • think about it, if RA could be cured with tumeric don't you think rhematologists would be handing out tubs of it to all of us?


    My direct answer to your question is, frank, no I don't. I find conventional medical doctors very blinkered and self protecting in their thinking. They seem to be led by what Big Pharma tells them in selling expensive drugs.

    I have tried conventional drugs and they just don't work. I have been trying other things myself. I find electro acupuncture and Chinese herbal medicine very effective. Western conventional doctors don't want to know about that but why? The answer is because it threatens them.

    My mother had rheumatoid arthritis. She only had minimal drug-free treatment for it for a few months at the age of 31. She reached aged 80 and though she had severe atherschlerosis, which likely was caused by the RA, she did get to a good age without any drug treatment.

    The answer to whether RA can be managed by the individual patient is that it certainly can but some people just don't have the wherewithal or the ability to do it themselves.

  • thanks for saying all of this DelicateInput. I personally really appreciate your input.

    I have found that the main reason why I started seeing an integrated dr is because I did not want to come off meds on my own and I needed someone to do all my blood work and find out why I have had so many autoimmune problems. However I have actually loved the journey that I have been on because I have become such a science geek and love finding out why the body does what it does.

    Some of my closest friends who suffered with ra have reversed symptoms by never taking meds and diet alone but of course there can be risks to doing that.

    I just think we are all on our own health journeys and it is a personal choice if we take meds or see a alternative specialist or whatever.

    I really hope that you can share with us all a bit more about the Chinese herbs etc that you are taking. :)

  • Hi dishina. I'm sorry you are having such a rough time especially having a little one to look after as well. Since being diagnosed as a child I have taken loads of different drugs, some work well others don't touch it. And RA is particularly annoying in that a drug that works well for ages can suddenly not work for you anymore.

    Methotrexiate is a DMARD, sometimes people who take it go into remission and see their symptoms improve immediately but mostly its a drug used to reduce long term damage. I am on methotrexate and unfortunately didn't go into remission. I have no blood markers either which means my RA is a s*d to track.

    DMARD's are no picnic but then neither is RA. They work by reducing your immune system and can mean you pick up every infection going. They also do for some have some grotty side effects. BUT.. Whilst I am no Rhematologist I would say that anyone taking a drug that they are worried about should stay on it and speak to their Rhemy for advice. By all means we should do our research but not chuck the pills out before looking for a suitable alternative.

    As you are at more risk of infection, try to be a bit wise to risks. I use antibac gel when out and about, especially after using cashpoints and pin machines. I use antibac wipes as well and give every public toilet I use a wipe before using it. I open the loo door with my elbow. As you have a little one, make sure her nursery or childminder know you are more at risk, they try to be strict with children bringing poorly children in but they might be a bit extra vigilant. Consider using disposable gloves when you change nappies or empty the potty.

    My daughter is 13 now and I have always had RA. The advice I can give as an RA mum, is except all the help you can get. Stop ironing except for school shirts, life is too short for ironing. If you are really poorly plan activities you can both do sat down. When I had anemia I could barely get out of bed. Daughter used to climb in with me and we would find songs with lyrics on youtube and sing along to them. And we would look through all the old photographs. You could make a special box of things to do when mummy is very poorly. Playdough is a good activity for people with RA and they like to join in with you having your special heat packs (just heat their pack less) and cold packs and doing your funny excercises.

    RA is all about balance. Balance between too much activity and not enough. Balance between independance and getting help and balance between being clued up on your drugs and making tough decisions on them.

    Good luck xx

  • These are fantastic suggestions, pinksugarmouse - for any parent with any chronic illness, not just RA. Really fantastic. I just wanted to say that. :)

  • Thank you :)

  • The drugs terrified me too that I why I wouldn't take them. I chose juicing instead, although it takes several months of dedicated juicing to see results, now my RA is in remission. Doctors dont tell us this because they don't know. Pharmaceuticals wont tell us about natural healing because they would lose business. There is much information on internet about juicing and peoples healing.

  • Okay here goes; I don't want to take away people's hopes for better health, but as ghastly as these drugs are they often DO work. There is no current trustworthy evidence supporting changes in diet to improve arthritis. It's all anecdotal. A healthy diet, suitable excercise and a reduction in stress are all highly recommended for people with RA but there is no cure and the only thing that will slow down the damage cause by RA is to reduce the amount of time your joints are inflamed and the only way we know for certain works to do that are drugs. Don't get me wrong they are a double egded sword, they all carry risks and grotty side effects but there is supported medical evidence that they work at what they are prescribed to do.

    I don't work for a pharmacutical company but I know after having RA for most of the 35 yrs I have been alive that without them I wouldn't be walking, perhaps even standing or sitting. Look at the state of the joints of people who suffered decades of RA before these drugs were available. These drugs aren't the holy grail but they offer a chance.

    I am sure that doctors wouldn't have been holding me down as a toddler to inject my joints with steriods if they thought avoiding wheat or chomping on herbs might achieve the same effect. As a child I was treated by the leading child expert on Juvenile RA and I believe her over and above anyone else. And she prescribed drugs.

  • I really feel sorry for the girl who wrote this post all we are all doing is talking about side effects of drugs etc etc and for someone who has just diagnosed with ra this s***t is bound to scare the crap out of her. Lets just all try and be adults and leave the post along now. I really don't think it is fair that we all continue talking about this stuff. Just my opinion take it or leave it.

  • Fair enough Kaleb. You are entitled to your opinion. I trust in and will continue to trust in science and science based evidence especially where health is concerned. I genuinely hope these things work for you. I am concerned that they won't but we all have to make our own choices. Lets just hope that one day someone finds a complete cure for RA. I think we can all agree on that. Take care. This will be my last post on this thread, as it is no longer productive. xx

  • You & I feel the same for those who put their faith in a natural alternative Pinky but I think until they physically see that damage is still likely it falls on deaf ears I'm afraid.

  • guys I am no longer replying to this post I really don't think it is fair to the girl who originally posted.. We are all gonna scare the crap out of her and I for one don't want to do that.

    However I will repeat myself and say this again my doctor that I am currently seeing is a rheumatologist but he practices in integrated health and this is something that is becoming more and more popular because these people are trained dr's and they will put patients on meds if they need to do that but they also like to look at diet and take blood work etc and figure out certain things that a normal ra dr would not do and this is not the sort of help that I would receive from a normal doctor. I have had ra for long enough to know that I am more than happy with the type of treatment that I am getting at the mo and it is an personal choice how we treat our ra.

    Please though be considerate to this poor girl who posted a simple question all of this continued whatever you want to call it is not fair on here.


  • My reply was intended for pinksugarmouse & in agreement of her thoughts. I'm sure dshina understands considering her reply to me. At this stage we think that she needs to get her condition controlled & if she wishes to consider a functional health practitioner at some time then I'm sure she will, that's entirely up to her. As you say it's a personal decision, the same applies to us too.

  • no more heals believe it or not I mean no harm and was not replying directly to you but I just am firm believer that because not everyone is lucky and has the experience of the meds working for them we need to find other ways of treating ra. Not everyone has the same experience with me but I have learnt the hard way to not just rely on one dr and to get plenty of help from lots of peoole with ra and to make sure that I just do silly things like go to the gym every day.

    Your right it is a personal choice but I just feel like not everyone understands functional health and are talking about things that they don't really understand. I am not saying you don't but functional health in the uk is a pretty new thing here.

    Right I am off take care.

  • I received an alert so replied, no probs.

  • don't worry just wanted to clear a few things up you know. Have a nice evening yeah

  • Oh they're clear, just I don't think she as you have needs to learn the hard way, she's at the beginning of treatment, only 6 months in. That's the thing you see it's a choice & the 2 meds she's tried have given her concern, we were helping her by explaining she's had a bad experience & that it's not all bad. You must see that she's in need of treatment?

  • no more heals I am not saying she does not need treatment but as far as I am concerned there is no difference between the type of treatment I get to seeing an normal rheumy the major difference is that a rheumy will only look at your joints an integrated dr will look at why you got this disease and all the crap .. right I am laters

  • I understand, there is a difference.

  • just want to apologise to dshina because this post as far as I am concerned has got totally out of hand and I am sorry about that . Look whatever you do it is your life your body do what is right for you. Take care.

  • I was diagnosed with Lipus when I was 21 (now 56) but by the time I was 30 it was obvious that I had also got RA. The Rheumstoid factor didn't show in my blood till about 4 years ago!!

    Blood tests are at best a guideline.

    Good luck!!

  • Hi dshina. I typed a long reply when you first posted, but somehow lost it. It has taken me all this time to reply again...

    I'm scared too. I was diagnosed with sero neg inflammatory arthritis in Nov and started on Hydroxychloroquine. This diagnosis was changed to psoriatic arthritis in Feb, and methotrexate was added to the mix. The week before my first MTX dose was awful: the patient info leaflet lists 5 major risks and 47 common ones, and let's face it, any drug that requires an X-ray before you start and fortnightly blood tests while you're on it is not to be taken lightly! I think it's hard when you're sero-neg, because there's a corner of your mind that doesn't really believe the diagnosis, since your blood tests are 'normal', after all... Maybe we don't really NEED these meds, eh?!

    For me, the decision was made easier because I was undiagnosed and untreated for so long that damage has been done. I *knew* there was something wrong with me, but no doctors believed me at first... Then my hip collapsed and needed replacing, and my hands started deforming and I grew lumps on my tendons... Suddenly my pain was VISIBLE and there was concrete evidence that there was something wrong with me... It made it easier to get treatment at last. But it's a high price to pay: the point of treatment is to *prevent* that kind of damage, but I wasn't treated... So now I am finally being offered the drugs, I'm taking them - because however scared I am of the drugs, I'm MORE scared of the disease.

    'Alternative treatments' are worth a try, but as well as conventional meds not instead, imo. There is NO scientific evidence that they work, although there IS some evidence that a vegan (plant based) diet reduces inflammation, and evidence that sugar and alcohol and wheat cause it for some people. It makes sense to clean up your diet and lifestyle generally, I think, to give your body the best fighting chance. But I think of dietary changes and alternative therapies as like umbrellas in a rainstorm: they won't stop the 'rain' of RA, though they might help protect you a bit so you don't get quite so 'wet'/ill...

    So, the fear is real and normal. Loads of us here understand it. The night before my first dose of MTX, I posted here and on another forum, and people were kind and reassuring, and gave me some practical tips too. Come back and post again when you need advice or support - we're generally a friendly, helpful bunch :) I hope you get your questions answered, sooner rather than later...

  • Heads up to pinksugarmouse, even if she is no longer in this thread. Most supportive advice and practical too. We can all tell of experiences we've had regards medication (or alternatives) but none of us has the right to advise Dshina as to what she should do, that is her choice alone.

    However, we can all be supportive. I personally love the tips given by pinksugarmouse as to how to entertain a child when even getting out of bed isn't an option. That's support given with kindness and empathy. 

    Dshina, of everyone posting here, I think pinksugarmouse has the most positive outlook and that's what will help you cope along with whatever medical route you choose to take. 

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