Just wondering what was the process for some of you when you first found out you had RA. I am from Canada and waited July 4th that I possibly have RA based on X-rays and blood work. Just saw the specialist August 14th. He wants to rule out any other possibilities so he has ordered more blood work but said he strongly feels 98% that I have RA based on my first test results and by looking at my swollen feet and things I shared with him. I left disappointed for I am in a lot of pain and I want to get this under control for it keeps me awake at night sometimes for the pain is so bad. He prescribed me Celebrex and vitamin D and wants to see if that helps at all. I will be seeing him again in 4 weeks to discuss the results of my 2nd set of blood work. I just feel like he deals with this everyday and does not relate to the pain of this and how most people just want to be pain free as quick as possible not have to wait even longer. so my question is this, did all of you have to go through the same some what long process before your meds were started and felt some type of relief. I know we are all individuals and have different severities of this however I was told my levels were very high and needed to be seen quickly and put on meds yet I feel like I just want my normally quality of life back. Thanks in advance to anyone who is willing to share their process.
Process of medication: Just wondering what was the... - NRAS
Process of medication
Hi I was lucky and got treated quickly but most people take a while whilst the doctors check bloods, do X-rays or scans and do physical examinations. I think it is important that they get the correct diagnosis as the drugs are quite strong and you need to be sure exactly what the problem is before treatment starts. Maybe you could ring though and ask for some good pain relief whilst you are waiting on diagnosis. Good luck xxx
thank you for your quick reply.
Well at least now you know your not on your own with this awful illness. It's very hard but I just started a new med and I feel things are improving so keep your hopes upxxxx and keep chatting here I find it do helpful xx
Hi, I was lucky in that once I spoke to my gp, I was seen quickly by my consultant, and started medication within a couple of weeks. Of course, I think I had RD for a long time before I took that step.
I can understand totally that you are anxious to start treatment asap, but it is important that the diagnosis is confirmed if possible. I think Allannahs' advice is spot on, you really need some effective pain relief, which can tide you over until your next appointment.
If you Google NRAS, you will find lots of information about the disease, and treatments
This forum is great for support and advice.
Hope you get some effective treatment soon! M x
Hi, I was lucky in that once I spoke to my gp, I was seen quickly by my consultant, and started medication within a couple of weeks. Of course, I think I had RD for a long time before I took that step.
I can understand totally that you are anxious to start treatment asap, but it is important that the diagnosis is confirmed if possible. I think Allannahs' advice is spot on, you really need some effective pain relief, which can tide you over until your next appointment.
If you Google NRAS, you will find lots of information about the disease, and treatments
This forum is great for support and advice.
Hope you get some effective treatment soon! M x
thank you....I just find I am so depressed when you go from running 6 km a day to a couch potatoe looking at 4 walls and in pain it is hard to stay positive..i forgot to mention I also had knee surgery 5 weeks ago because in January I feel and broke my ankle and knee cap so this has been a long year and just want to get going on things....hopefully before Christmas I will be feeling myself again....thanks again for your support and kind words
Oh dear, I feel for you as I well remember that bit. It took me months to get started on the meds, partly my own fault for not pushing hard enough and partly the slow process. It is frustrating, but these are strong drugs so not to be given lightly and docs do need to check that there's nothing else that could be the cause, and so had the full battery of blood tests, x -rays to check that my chest was ok for the meds, and then started on very low doses of one drug and slowly (very slowly) worked up to full doses of three drugs.
But I'm afraid to say that this disease does teach you patience....as once you get started it then takes weeks/months for them to work. All in all it was well over a year until I was "myself" again. But I did get my life back, so it does work in the end.
thank you helix for your kind words ...this is not a fun thing to have I can say that glad to know you are feeling yourself again that is positive to hear and happy that you have relief ....I guess each doctor does their own thing in treatment ...but I agree I want to know 100% it is that before starting such meds....have a wonderful weekend ...amanda
Hi Amanda, I too went from mountain climbing on Saturday to bed ridden by Sunday. It took a lot of getting used to but I at that stage found here a great help and stopped me feeling isolated . As the others say patient is indeed a virtue in this game, everything seems longer when you are sore. Hugs xx
oh how true ...thank you allanah its nice to feel not so alone .....hugs back at you...
Hi,
No, but then I live in the Canary Islands and went to a private MD because I wasn't in the health system here and had been away from the UK for too long . However with blood test results from (a) Rheumatoid factor then backed up by (b) C. Reactive Protein and (c) Sedimentation Time his suspicions should have been "RA is high on the list so she needs treatment". I can understand why they call the GP´s surgery a medical "practice"! I really don't see the point in the Vit D but ask firmly for Metatrexate, start on 2 x 2.5 mgms once a week, (same day) plus Folic Acid and see how you tolerate it. Its a tiny pill and most people don´t have an issue with it. Stay on the Celebrex but do also use a stomach protector (Omeprazol @200 mgms) with the Celebrex. Then monitor your condition along with your doctor from there. I think that the only problem in the UK is that you probably have to have a prescription for MTX whereas here you can get most things over the counter.
MTX is a prescription only drug on Mainland Spain Casa-Margarita, though it may differ on the Islands. Whilst it's true some UK prescription only meds can be bought over the counter I would have thought it unlikely with MTX as it's a cytotoxic drug. The same applies to Celebrex, prescription only.
I would be alarmed to get drugs like this over the counter, as they really should only be taken with the support of and monitoring by a GP or rheumy! Even such a tiny dose of 5mg could mess up your liver if you're susceptible, so not worth the risk to my mind. Annoying to have to wait another couple of weeks, but much, much safer!
My only experience of off-prescription drugs was in Vietnam, where I had no choice, but was very worried about things being counterfeit or way past their expiry so not a relaxing experience.
Well there you go - that's the way it is here. I have never needed a prescription for either - and at several Farmacia´s. Surprised you don't need a prescription for Asprin in the UK
Now, I think there's been some misunderstanding here. In Spain, when you are prescribed anything by a Private Doctor it's normal to have a written prescription which is given to pharmacist & the full price is paid for the medication, which could be misconstrued as paying for an over the counter medication.
Under the Spanish Healthcare System (Systema Nacional de Salud) a pensioner who has Residencia with an income of less than 18,000€ per annum & has made a Spanish tax declaration to Haciena (even if it's a zero amount) will pay 10% of the cost of the drug up to a maximum of 8€ per month. If no tax declaration has been submitted you will still pay 10% but the maximum cap of 8€ per month is not applicable.
This explains in detail abacotaxes.com/prescription...
If you have any queries about getting your SIP card your Gestor should be able to help you.
I was diagnosed in Spain & consider myself fortunate as I had an examination by my GP & she suspected RD from that. She took a blood test which showed a highish Rheumatoid Factor & made an appointment for me to be seen at a diagnostic clinic within 2 weeks. My GP advised I stayed off the anti inflammatory & painkiller she prescribed me for a few days before my appointment to give clear drug free readings & for xray results to show my true inflammation. The Diagnostic Rheumy confirmed seropositive RD & started me on my meds the same day so was being treated until my the appointment with my Consultant came through. I think it's served me well in the long run. Obviously different countries have different ideas & treatments & meds can also differ slightly so you may get varying answers.
I hope you get the treatment & meds to start controlling you soon, I remember only too well just how awful the pains, swelling & stiffness was waiting for them to kick in.
I don't think Methotrexate would be easily available over the counter in many places because it is a powerful cytotoxic drug and needs regular montitoring. I know it's very frustrating Fear-of-nothing, I had a long wait and am presently off all drugs because of side effects so having to try to be patient again. But I do advise you to wait for this consultant to get back to you. I can absolutely see why he told you to try vitamin D. If vit D level is insufficient or deficient this can worsen joint pain, cause depression and is especially important for those with autoimmune diseases such as RA and MS. The Vitamin D Council is based in Canada I believe and depending where you are based and whether you get a lot of sunshine this deficiency can be a serious problem.
If your anti-CCP is positive (the more specific test for RA) as well as your Rheumatoid Factor then this might affect the treatment you are offered so it's not just about whether you have RA but what sort of RA i.e sero positive or negative.
Hang in there - as Helix and Allanah have both said these are strong drugs and it's important to get the right ones for you. Twitchy x
thanks for the advice twitchy....I do live in Ontario Canada and in the past I had very little vitamin D in my system and had to be on 90,000 iug for a month and then 70,000 with a decrease weekly ....so maybe this is why he put me on this ....the levels I had was 297 and it should be under 14 and the other one if I remember correctly was something like 67 and should be under 20 ....but I am more then willing to get a current blood test.... I did check to see what all is ordered and he is doing a lot of liver function test as well as inflammation testing etc...trust me I really do not want to take any toxic drug for that matter I do not want to take any meds what I do want is to be back to my normal self and be able to start running again...thanks for the positive encouragement Amanda
Well it sounds as though he is being very thorough to me Amanda and that's excellent. You will probably have to take some strong drugs to get this disease well controlled but that doesn't mean you will have side effects and hopefully it will mean you can get your running shoes on again one day in the not to distant future. It is pretty life changing being diagnosed with an autoimmune disease and most people find that if they get their lives back they are changed in some ways - but not always for the worse. I even do zumba sometimes when I can find the time and the energy and I walk the dogs every day where once I had to get downstairs on my backside and get back up as a crab would! Good luck with everything. Twitchy x
Hello, Fear-of-Nothing. My GP suspected RD, so did the blood test and then referred me to a rheumatologist (privately for the first session - I was in too much pain to wait). I arrived with my blood results in hand. The raised inflammatory markers along with the swollen hands and feet made it pretty clear that RD was likely but, like your consultant, she wanted further tests before prescribing what are quite strong meds. Two weeks later, I was on steroids (decreasing over 4 weeks) plus Sulfasalazine and Hydroxychloroquine (increasing every two weeks). The steroids gave instant relief so I hope that happens for you.
I know that 4 weeks seems forever but stay fearless. You will be helped.
Judy
thank you judy ....I am very thankful for everyone's input of the journey of this painful disease ...the joys of getting older I guess....from what I am reading it sure is different from country to country but the outcome seems to be the same....hopefully in time they will find an easy cure for this and a less toxic way to treat it....have a lovely weekend Amanda
Amanda I wish you good luck with your journey - but just wanted to point out that even children can get RA (although it's relatively rare thankfully) and it is most common from the ages of 30 -50 so nothing to do with getting older - unlike Osteoarthritis which usually is. Twitchy x
I'm also from Canada (Ottawa). I was diagnosed in January 2012. I was immediately put on a strong NSAID but had to wean my youngest before starting MTX. I have had two rheumatologists (the first one retired on me last year) and have read reviews of nearly all the other rheumies in Ottawa. They all seem to have too many patients and I figure they deal with a LOT of people who are scared and in pain. I think most of them have their prescription pads in hand to try to get you in and out as quick as possible, believingthat simply finding the right drug therapy combo is the best management tool (maybe it is). The problem is that what works for one doesn't necessarily work for the next, and the drugs are powerful toxins with a range of side effects, so I think some would rather start slow and try to get you improvement with the least amount of pills/needles. I started with 4pills of MTX, once my son was weaned, and went up by two pills every 6 weeks. After 12 weeks at 10 pills (the max dose), and with each day feeling worse than the day before, I started Humira. FOR ME, that was the "magic cure", but it only lasted 14 months (granted I also reduced my MTX to 2 pills and ditched the NSAID during that time). I'm now back to 10 pills of MTX, my NSAID, hydroxyquine and Humira, and after two months am starting to feel like I am coming to the other side of this (so far) 9 month "flare." My current rheumy doesn't speak English very well, doesn't read my file before she sees me, can't keep track of my visits, and looks at my hands from across a desk to arbitrarily judge that they are "a bit better". She focuses mostly on my blood test results and keeps her prescription pad handy. I'm not sure there's a better rheumy, so I'm putting up with her for now.
I do agree that there is a huge gap in the health care system for people diagnosed with chronic disease. I tried the Arthritis Society and they appeared super uncomfortable when I bawled to them about not understanding, and wanting to get better, and not being able to hold my baby. They gave me a jar opener. I bawled to my rheumy, and he gave me a prescription. I bawled to my naturopath, and she sold me some supplements. We need someone who can hand you a kleenex, offer a gentle hug and say, "Don't worry, it gets better. You CAN live with this. These are some things you can expect..." Hopefully that's why we're all here. Good luck. The first 8 months after diagnosis for me were HORRIBLE. Every day felt like the worst day of my life, and I didn't know how I would get through, but then the next day was worse. And then less than a year later, I raced the Ottawa Race Weekend 5K in 30 minutes! I also went on indoor rock climbing dates with my husband and went ziplining with him for his birthday (until symptoms started to return 2 months later - but it has NEVER gotten anywhere near as bad as those first few months). You'll find your silver lining.
Good morning Karen thanks for your reply..you are so right about the lack of explanation with this disease and support ...that is exactly how I felt when I left my appointment ..in fact his nurse spent more time with me then him and that was my first appointment...he basically looked at my blood test results and looked down and my feet and said he believes 98% I have RA and that if I do not have a medical coverage for medication I best apply for trillium because I will be on many drugs which are costly....said I would like you to have more blood test just to rule out other things see you in 4 weeks ....take NSAID vitamin D and Tylenol Arthritis ...on my bad days which are more then good it is so hard to open a simple bottle water, get dress and have a good night sleep that I just want to scream ....I never ever go to the doctor unless I really have to ...in fact I put up with the swelling and pain which started in March before finally going to the doctor in beginning of June because I could not take the pain anymore and the lack of sleep...unfortunately this doctor is head of Arthritis Society and I think he has become numb to his patients and their complaints and concerns....sad I think because I always thought most people become a doctor because they have compassion and like to be caring and help become pain free to the best of the ability ...I am not saying all doctors are like that but so far that is what I found with my first visit ...hopefully things will change if not I guess I will have to find my answers on this forum .....hopefully you get things sorted out for yourself and get back on to feeling yourself again ....ONE QUESTION KAREN do you find in the colder months aka snow time that your RA is worse or is it the same ....thanks again Amanda
Hi Amanda. We're used to doctors having all the answers, they don't. We're used to putting other people's needs ahead of ours, we can't. We're not comfortable advocating on our own behalf, but we have to. Do as much research about this as you can, you'll come to learn what makes sense and what doesn't. We all experiment on ourselves, with diet, meditation, chocolate, self-pity parties, supplements, etc. What works for some, won't necessarily work for others, but experimenting, for me, gives me an active role in my health, rather than passively waiting for the next dr appt, which always seems too far away.
I didn't think my RA was affected by changes in weather or temperature extremes, but this past Ottawa winter was endless. It either affected my joints or it affected my spirit, which in turn translated to joint swelling/pain. I know this sounds contrary to popular opinion and may not be rigt for everyone, but when my feet hurt just to stand, I was told I should get orthotics and absolutely never be barefoot. Yet, as the pain diminished, I noticed myself absentmindedly forgetting to wear my shoes indoors. I started looking into it, and have adopted minimalist footwear, including Vibram Five Fingers, and I haven't had any foot or toe problems with this flare! In fact, my feet and toes are much more flexible and strong. If this is an approach that interests you, I would just caveat as follows: DO NOT TRY THIS WHILE STILL EXPERIENCING PAIN AND WORK INTO IT.
Good luck.
I have had RA for 3 years now. I am so disappointed in the Rheumy doctors they don't understand the pain wenarengoing through.
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