very new here and even newer to RA as in... yesterday I had my blood tests result back looking "abnormal" on the RA front and of course I am waiting to be referred to a specialist ... I don't quite know how long the procedure will take but I know how long it took me to have my first painful symptom up to now... it happened on the 23rd of August !
Since then I've woken up every morning with a new painful and swollen joint to be found and what has surprised me of course is how rapidly and aggressively it has all happened !!!
Wondering if that has been true for many of you or if I should still not discount other possibilities i.e. viral cause.
I'm also not keen on drugs and would be interested to know if any of you have succeeded with any alternative route ... and which one has been the most beneficial...
Love also to hear about an appropriate diet as I'm sure many of you have found first hand what's good and what's not so ... I've been a vegetarian for just short of 30 years now and I'm pretty sure my diet hasn't been the most balanced but equally I've never indulged in junk food ...
I might be premature in asking all this questions but...
Looking forward to your replies
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Fede
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I can relate to this as i have only recently been diagnosed and my problems started in my feet. Within 3 months it had moved to my knees, hands, wrists. It is now causing problems in fingers and ankles. However, once i was referred to Rheumy clinic i did attend my appt within 3 weeks which was end of July. I have had lots of tests and scans and have been placed on medication, Arocoxia, Hydroxycloroquine and had Steriod injection to reduce swelling and pain. I can honestly say I do not know enough about the alternative medication that may be available but I do know the earlier they start to treat it the better it is in the long term and can avoid joint deformaties etc. The medication is quite indepth which i am still trying to get my head around and hav'nt fully accepted the diagnosis myself yet. The fatigue is also very difficult to deal with and the weakness in the hands which you may not have come across yet.
I hope you are sorted out quickly but it is an ongoing process which i am currently going through at the moment. My medication is not quite right yet but i know when i attend the clinic in 3 weeks time, this will change again as although there has been some improvement, i am still suffering with a lot of problems in my hands and elsewhere.
I'm very sorry you have ended up here, and empathise with the discomfort. Nobody wants this horrible illness, but it's good that you seem to be getting treated promptly. Everyone is different with RA, it's a very individual disease, but a lot of us have experienced the rather scary roller coaster of symptoms that happen extremely fast. Mine started with odd twinges, and then one day it just took off and progressed so fast I couldn't walk within a few weeks. (Much better now tho'!). As to treatment, again we're all different. Some people do find one or other of the alternative approaches a help to them as an add-on to drug/surgery based medicine. However none of them have been proven to be effective on a larger scale. You'll have to make your own decision, but this is a damaging disease. People who've had it since before modern drugs were available can demonstrate how awful it can be without the drugs and how nasty the joint damage is. And even with the drugs not everyone responds fully - I'm over a year in and still not fully under control. The drugs are frightening, and toxic, and I certainly wasn't keen since I'd hardly used more than an occasional aspirin before. I don't think anyone here relishes taking them, but the life without them is far, far worse. But so as not to depress you completely, even tho' I'm not completely stable yet, life is back to being pretty good so it is a disease that you can manage. Good luck. Polly
Hi Polly and Debbie, thank you for your answers ... feels like just starting to get my head around all this and so much more helpful to hear from people who are experiencing the same ... and of course we are all different but you both seem to confirm how fast it can all sets in !
Strange how when I found myself joining the site last night it felt like my first "real" step to admitting to myself of what's happening ! .. not easy !
I'm also confident I will find help and support amongst you... rather than banging my head against the wall !!
Debbie ... yes my hands have been effected too especially my right hand ... not very impressed by not being able to open a bottle of water anymore !!!
and Polly ... you seem to suggest the drugs appear a trial and error situation so ... do they actually fine tune them depending on how sick you get with one or the other ???
There are a couple of blogs from people like LynW that explain this better than I can, but it seems docs usually take a step-up or a step-down approach. To summarise hugely, step-up starts with one drug (usually Methotrexate), and then increases it's dose and adds on other drugs until you are stabilised. Step-down usually gives you three of the disease modifiers to start with (Methotrexate & 2 others) and then v slowly tries to reduce down once you are stable. If you fail on these DMARDS only then can you move on to the biologic drugs - and failing either means they don't work for you or you can't tolerate the side effects. I'm lucky as I had 8 horrible weeks of Methotrexate headaches/nausea/etc side effects but then they died away and now I just have a few hours of feeling groggy after I take it, and it seems to be working reasonably well. I take another one as well now, and am probably about to step-up to the third DMARD as still not controlled fully. NRAS do have lots of useful info so do take a look at their website. Polly
Hey Polly ... just now having a look at the website and intending to call them for any helpful brochure.
The drugs do sound nasty though... I don't know what's your situation work wise but so far in my life I've been a one (wo)man band ... I am lucky enough to be having a break at the moment from what is normally my quite hectic and unsettled lifestyle ... it is becoming very apparent that a drastic change is necessary (even by following the drugs route) ... could I ask you how you managed to cope with all this ?
There was a poll recently on HU site (look at top under polls!) that asked about effect on career. You'll see that it does by & large make rather a big difference. Depends on what you do, and how your RA goes. You could well be among the group that takes to the drugs v easily & never has a twinge again! But generally it's really important to pace yourself so you may need to think about how & when you work as getting overtired doesn't help. I actually quit full time work and now just work part-time. Polly
Hi Fede, welcome to the site, it is a very confusing time for you at the moment take everything one step at a time, you don't want to get to confused and frightened at the moment, it's a lot for you to take in.
Everyone's RA progresses at a different rate, some quicker than others, what route yours will take may be visible over the next few months. That is what the consultant will go on, not just your blood results but how you are feeling too. So, when you do get to see him/her you must remember to be very open and honest not brave! It will help them treat your RA better.
It can take quite sometime to get you on the right regime of drugs, medication will start of slow, depending on your symptoms and gradually increased to your needs and to control your RA.
You have to remember although the drugs are "nasty" and so too are some of the side effects, the untreated RA is even worse for you! You then get irreversible joint damage! something you don't want/need, leading your body into more of a disability.
Like the others have said the sooner you can get onto medication the better your life will be, consultants have learned a lot from scientific research over the years and this being one of them.
At the front of the site there is also a search engine, if you put in what you want information on, such as a drug then all the recent Bloggs and questions will be bought up for you to read.
Like I said there is a lot for you to take in at the moment so don't try and learn everything about RA at once, it's impossible!
I've had RA 17years and I'm still learning.
Ask anything you want to though and we will all do our very best to help you through.
Hi Mand ... you seem to have hit the nail on the head !!!
I know I'm trying to get as much (maybe too much) info at once ad I do think it's because I've been alarmed by the rapidity in which the symptoms have manifested !!!
In only one week (between blood test and results) I've realized that the GP had been completely left behind on the correct picture of what was happening to me .. funnily enough I thought about it only afterwards !
Welcome and glad you joined, this site will be great help to you, even if it turns out you don't have RA, which is very possible, so wait until you have diagnosis confirmed by a Rheumatologist.
Many things can cause inflammation in the blood, not least of all virus & Lyme disease to name but a couple.
In my experience, the quicker you get an appointment with a specialist the better. While it is true that joint damage is at a different rate for different people, the majority of untreated sufferers of RA can suffer Joint damage quite quickly. I don't mean to scare, but I was seen quite quickly and treated quite aggressively with medication and still have joint damage in wrists and ankles, but am quite well in general.
All medications carry a risk. Diet and complimentary therapies are all very useful. However, if you are diagnosed with RA and don't take the prescribed medication the disease will progress unabaited, there is no cure, and only treatment to SLOW the progression. Fortunately for us, there are many new & old treatments fro RA and much more choice, and it is rare nowadays to see severe disablement from RA.
Good Luck, I know you will in time get treated and you will be fine. stay positive and try not to be frightened there is a lot of mis information, and we are only chatting from our own experience, the best advise is always from your GP & Rheum Team.
thanx for replying Gina and ... yes there is a mine field out there of information, good and less so ... and I suppose I need to be more patient until I get a definite diagnosis, either or !
Re. diet: I have found things like: too much tomato, pineapple, vinegar and anything very acidic triggers 'extra' aches and pains for me, so I tend to avoid using them too often. I have also found that I cant eat 2 jam doughnuts in the same day! (Yes, I am a pig).
Taking medications: I have had RA for almost 20 years now. Never took anything more than paracetamol before and that was at a pinch. Decided that I had to go with rheumy consultant's advice with regard to what medication I was to take, My Mum was in a wheel chair with RA, unfortunately for her medication for RA was not what it was by the time I was diagnosed, and medications are even better now. Also, my Mum on her own admission, just gave up. To be fair to her, there just wasnt the information around 30 - 40 years ago.
RA can also go into remission, sometimes for years and sometimes the medications can hold it off when they get them right, hence the need for loads of blood tests. I have found cold (Ice pack/cold wet towels, cold running water) helps when my hands/fingers/feet/ankles are hot, painful and swollen but others swear by heat so we are all very different.
I cant answer myself regarding alternative therapies for RA other than my Mum did try homeopathy but unfortunately it didn't help her, but like I have said, that was years ago.
I am having acupuncture because I have sciatica in my right leg but not because of RA. and I am not sure if that is working, sometimes I think it is and sometimes I think not. I have had 5 sessions and had hoped it would respond better than it has, perhaps I have assumed too much.
When you see your rheumy consultant take along a list of things you want to ask or want explained, a lot of us do it so they are quite used to it. I also take along a note of what has been happening with my RA since my last appointment. I keep a copy myself which I then keep in a file with any other RA information/
correspondence I am given - this helps me remember what medications I have taken and when I came off of something, why. My rheumy consultant says that he finds my notes helpful.
Sorry my reply to your questions have gone on a bit but I do understand just how you are feeling, promise!
Judi xxxx
Welcome.Fedi..
Ra is a minefield.. be guided by your gp/ consultant on what medication to take as you will need to properly assessed.
Like every thing else different diets may help but different things suit different people.. one of the members tia steph has a strict diet and she looks great! it is quite strict/ complicated, but trying to avoid wheat and dairy are her main tips..some foods upset people and make things worse it is a bit of trail and error, and I think you may have too find what suits you.. for instance I find an occasional massage helpful as my back isnt too good either or a soak in a jacuzzi, failing that if you can get in and out safely a bath.
. I dont eat red meat but eat mainly vegetarian my self.. but with some fish.
oily fish because of its omega oils in good for RA. but if you are a strect vegetarian there is a flax seed alternative.
We have some blogs on aids/ openers I can never undo any thing eiter!.. boots does a 6 in 1 opener which opens bottles and cans.. it avoids the need for several things.. but it always seems out of stock!. I have a battery operated jar opener.. and they do the tin opener also
I have been away for a couple of days and not had the chance to "get connected" but back home now and cannot of course thank all of you enough for the useful tips, advice, dietary inputs etc... and moral support !!!
I have been reflecting on keeping a diary of it all
i have been very lucky with my gp i just told her about my hands and feet and straight away she asked if anyone in my family had ra, my dad does she sent me straight away to a specialist who confirmed i had ra also . i didnt like taking meds before i always took alternatives, but i listened to the drs taking mtx has helped i have even been able to increase my work hours recently and i amless fatigued. so just keep anopen mind where medication is involved.
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