Various degrees of RA

[Jaxine]

It may seem like a silly question, but are there different degrees of RA? Or do we naturally get progressively worse as time goes on the longer we suffer from RA? I've only recently been diagnosed so it's all so new to me. I've only seen my consultant once ( in and out very quickly with out the chance to ask questions) and yet to see my Rhumey nurse. It seems many people on this site who suffer from RA are on a cocktail of drugs who experience alot of pain on a regular basis irrespective of medication. Or is it (as someone mentioned to me previously) that the majority of RA sufferers are living their life well controlled with drugs who don't need this site?

[rab1874]

Hi Haxine everybody suffers in different ways, some are well controlled with drugs and some aren’t but no 2 people are the same and I think that’s why it’s hard to keep the RA under control until we get the right combination off drugs, I’m quite well controlled with mtx and Humira but it’s taken me nearly 5 years to get to this stage and I had to retire medically from work 4 years ago aged 50, I still get problems with my hands and feet and still get steroid injections now and again the latest being in December which were in my right hand knuckle joints, I try to push through the pain and go to the gym most days plus busy conditioning 2 a week plus swimming and walking , hopefully you’ll get the right combination soon xxx

[Jaxine in reply to rab1874]

Five years! My god how did you cope? Thank god you've found the right combination now but thats a crazy time span.

[rab1874 in reply to Jaxine]

It took me a year to come to terms with having RA then trying different combinations but I found out on here it can be a long process and this forum is great and everyone helps each other xx

[Jaxine in reply to rab1874]

Yes I'm in the process of grappling with my diagnosis of RA myself. One day really positive another day completely over whelmed, angry, bitter and emotional at the loss of myself prior to RA.

[wishbone]

I believe there are varying degrees of RA, some more aggressive than others. The vast majority of people have no need to post here as their RA is either well controlled or they have a mild form and can get by ok with pain killers and the odd anti-inflammatory. At least that's my understanding of the disease.

[Jaxine in reply to wishbone]

Thank you that was very helpful and certainly explains it well.

[wishbone in reply to Jaxine]

Thanks, that's very unusual!...me explaining things well I mean.

[helixhelix]

Personally - and this is very much a personal viewpoint without evidence to back it up - I think in years to come RA will be divided into a couple of different strands. But at the moment they are all lumped together, vary hugely between people, and it's impossible to tell in advance which treatment will suit you. But you don't automatically get worse. Generally the aim of treatment is to stop that happening, but some people also have a very slow type of RA that doesn't develop much.

And yes, the majority of people are doing fine and off living their lives. I, with a few others long-timers, have been using this site for years and I can't count the number of people who are on here for a year or so, totally miserable, in agony and despairing. Then suddenly a treatment works and they're off! They'll be a post along the lines of "feeling bit better" and then a few pop back to tell us how well they are getting on a year or so later, which is truly great.

[Jaxine in reply to helixhelix]

What different strands do you think RA will be divided into? When I was first diagnosed I wanted to take on the world stand up to RA, try anything and everything not be defeated!! I was smug and feeling elated thanks to the steroid injection! But 5 weeks on steroid out of the system reality starts to hit back. I'm taking every day as it comes and hitting the meds hard. I'm grappling with so many mixed emotions at the moment, concerns, worries, anxieties but I believe these feelings are a natural progression and I'm allowing myself to feel the shame. However reticent of the need to be positive too.

[helixhelix in reply to Jaxine]

The first one to really unpick is sero-positive & sero-negative - does this really make a difference and if so, why? But what interests me most is the work going on to identify markers that will tell doctors which drug will work best with which person, so we don't have to go through the trial and error stages. And then the idea of more personalised medicine, so your doctor will prescribe precisely what you need including vitamins, hormones, supplement - you name it!

But already things are so much better that 25 years ago...both in the drugs and understanding of how to keep a healthy body.

[Jaxine in reply to helixhelix]

Agreed, it's awful that RA sufferes have to go through such an agonising long journey of trial and error before they see the light. But must importantly I'm looking forward to scientists identifying that gene that links to auto immune diseases specifically RA.

[Soundofmusic52]

I have had it for 18 months different types of med lot better than I was last year but still not right you have to go up the meds slowly which is really annoying some days I could walk for miles next day trouble to get out of bed no pattern no different diet tryed everything keep with it we’re all different x

[Mmrr]

As said by many above, RD affects everyone differently and to different degrees. I'm with helix helix , RD is most probably many diseases with similar, but not identical pathways. I'm seronegative, generally not seen as so destructive as seropositive RD, but in 2years since becoming unwell my hand joints have deteriorated significantly, my hand surgeon says I have an aggressive form of RD (his opinion), the rheumatologist doesn't think so.

If you are seropositive you generally are taken more seriously and offered more aggressive treatment. Most people do okay with modern meds, so stay positive.

[lovemydoggy]

I believe there are different levels. I did read that, but don't remember the source.

[SaneJane]

I don't have a diagnosis but I have the symptoms. It's hard for me to convince myself based on my symptoms that it's even possible that I don't have RA. I'd rather not have it. It explains a lot. Trying to get a better doctor so I can get a proper diagnosis. In the meantime, I've been on a very strict low inflammation diet, plus exercise, sleep, and stress reduction. I can control my symptoms this way. It's hard to stay on the strictest end of the diet or I'd always be symptom-free, but it's a learning process and is working so far. I know exactly what to do to have close to zero symptoms. However, so far, it's not enough calories, and so I'm at the low symptoms end of the spectrum and improving. It takes commitment and it takes hard work. Lots of reading, experimenting, and cutting up vegetables. Lots of shopping for vegetables. Lots of figuring out how to deal with hunger. I am actually rarely hungry for long, but that's why I have some symptoms. I'm going for no symptoms and no unusual hunger. I started out with weight to lose and easily lost about fifteen pounds without trying--while eating all day. I can afford probably 15 pounds more at most, but I'll be at a fairly ideal weight (according to the doctor) if I only lose six more. That's why after a ten-pound loss, I started to slow it down by eating basmati rice to add more calories. Mostly, I mostly eat large, fresh sweet potatoes, all kind of fresh greens, onions, garlic, ginger, turmeric, and carrots. I add in some squash, fruit, and soaked almonds but have to be very careful not to eat too much fruit or nuts due to the fructose in fruits and fat and protein in nuts. Soaking the nuts is extremely important. You can find instructions on the internet. I'm currently experimenting with eating a tiny slice of avocado and a tiny bit of coconut oil daily for added fat. I also use cinnamon on my baked potato, a little apple cider vinegar, a tiny amount of raw unfiltered honey, and a very small amount of salt with iodine. I have a limited amount of seaweed and sometimes a very small amount of miso and kimchi. Daily I take VSL#3 probiotic, and that makes a huge difference. I walk 20 miles week and move my joints several times a day. I also take B12 and get D from direct sun exposure on my legs, using sunscreen on the rest of my body as I've had a lot of sun in my life. I don't get excess sun exposure. I don't eat anything else right now. I just started the avocado/coconut oil experiment so don't know how long that will last. Also, ice my hands. Oh, I take a tart cherry capsule daily too, just because I've had gout symptoms too. I think I've had a low level of this building for years but a bad fall seemed to trigger the big flare that made me more aware and got me to go on this diet and continue to research options. Again, I can make all my pain and stiffness go away with diet and exercise alone, but keeping adequate calories keeps me adding more and that leads to symptoms, particularly, as you see, since I keep using my hands. I can tell you that I had a lot of things that weren't healing until I went on this diet. It was as though I'd swalled a magic pill, except that it takes a lot of trips to the grocery store, a lot of prep, and a lot of chewing to swallow.

[Orla5 in reply to SaneJane]

Very helpful tips on food thank you.

I stopped eating wheat, deadly night shade foods plus any sweets, cakes, puddings etc and my inflammation marker more than halved and went down to 20. Not easy giving up so much but worthwhile as regards controlling pain and further deterioration of joints!

[Jaxine in reply to SaneJane]

Sounds exhausting! I agree however diet is important although I think it would certainly help you to get a diagnosis, if it's RA you can get the necessary medical treatment which is also needed. I was only diagnosed with RA in January this year so it's a totally new journey for me, but having experienced the most debilitating flares I can honestly say (in my opinion) that a plant based diet or any other kind of inflammatory diet would not reduce the chronic pain experienced in my flares. I myself however, will be looking at alternative therapies plus diet to compliment conventional medicine.

[Rafandready70]

Hi Jaxine! My first post here. I’m 9 years post-diagnosis but think I got RA 11 years ago (1st GP I went to with concerns waved me away saying I was too young *rolls eyes*). I’ve been on methotrexate then added in hydroxychloroquine and sulfasalazine but just started on Benepali (in combination with methotrexate) due to erosions in my very painful feet! I’m seropositive with anti-CCP and rheumatoid factor and am now 48 but I live a completely normal life, work full-time, walk the dog, do normal household chores etc, and manage fine. I could do with losing quite a bit of weight as well which would probably help but that’s hard! I cried when I was first diagnosed and was scared of taking the drugs due to potential side effects but I’ve been lucky (worst has been queasiness after MTX) and also have good consultant that pushed for me to have biologic therapy. I wish you well and hopefully it will all be fine for you too xx

[Jaxine in reply to Rafandready70]

Great positive story! Gosh you were 39! Do you know what I can't imagine being diagnosed with RA at a young age in my teens, 20's, 30's and 40's as having had 4 children, working and studying and living such an active life a diagnoses of RA would have been dreadful. I realize now that I've been lucky to escape it until now. Great post thanks for that.

[calamityjane1971]

The good thing about being diagnosed these days is that RA is treated much more aggressively quickly than it used to be and therefore most people with RA do have relatively normal lives. That will happen for you too.

Unfortunately for me, I wasn’t when I was diagnosed 26 years ago and Im now in a wheelchair at 47 years of age., retired on ill health at 40. But I don’t let RA win and I do still go out and especially now I have an assistance dog, we go everywhere!

[Jaxine in reply to calamityjane1971]

God I'm so sorry to hear that, it's so kind of you to reply to my post offering me solice when life dealt you with a hard card at such an early age. Bless you

[Hidden]

I started with pain in just two of my fingers 17 years ago. I have got progressively worse since then and now my pain is extremely bad, especially in my arms, shoulders, lower back and knees. I don't feel that I have ever got very far with the rheumatologists that I have seen (and I have seen four). The first one was the best but she died in a car accident so I was moved to another one. I have been tried on several types of medication with no effect.

I have an appointment today after six months and am in very bad pain now.

[Jaxine in reply to Hidden]

I'm very sorry to hear your story and hope you get the help you so need.

[Hidden in reply to Jaxine]

Thank you Jaxine, I have been to see my rheumatologist today and she remarked herself that there are so many degrees of RA and all the other kinds of arthritis. Some can still work and walk long distances, others are in a wheelchair like me.

She said I have osteo arthritis in just about all of my joints and there is nothing to be done except for pain killers and in my case they don't seem to have much effect. I also have psoriatic arthritis as well. She gave me a steroid injection and I hope so much that it helps even just a little bit. I am to see an orthopeadic surgeon about a knee replacement. She now thinks that I may have osteoporosis as well and I have got to have a scan for that so life it not good for my health, but I know I have a lot of other things to be thankful for.

[Jaxine in reply to Hidden]

I had a steroid injection 5 weeks ago it worked wonders wearing off slightly, so hope it helps you. Yes I have OA in a couple of my finger joints. I hope you get lots of pain relief feel for you

[AgedCrone]

Hi Jaxine.....There are many different types of RA & it is definitely true that if you are doing well on your prescribed drugs you just pop in here every now & then to see how everyone is doing.

But this site is a great support for the newly diagnosed ...both to explain that if one drug doesn't suit you - there are plenty more to try, & that many of us have been diagnosed for years, 20+ in my case, & I'm doing well.

Today not too brilliantly as I have bursitis in my hip which is playing up....but that happens to people without RA too....so nothing to fret over

I'm sure you must be very apprehensive right now, but being postive & trying to look forward with an optimistic attitude will - I think. - go a long way to how you do progress with RA.

Good luck ...I hope you find the right drugs for you quickly, so that you can get back to near normality.

[Jaxine in reply to AgedCrone]

Sorry to hear about your hip sounds very painful. The more posts I read the more I've come to understand this condition. I was shocked to get a diagnosis of RA at 55!! But the majority of people seem to have been diagnosed in their 20's and 30's! I've alot to be thankful for. Thank you

[AgedCrone in reply to Jaxine]

RA is the all giving disease...it can manifest itself from tiny children to people well in to old age.

You are fortunate that you have been diagnosed quickly, & prescribed the drugs your highly qualified rheumatologist has decided are the best choice for you.

They may work well & you will sail off & enjoy the rest of your life...or you may need to try a different regime.

By all means try out different diets, but as far as I know there is no clinical proof that any particular foods will make your RA go away, so please take your prescribed drugs & try the diets with them, not instead of them.

[Webbles]

No 2 people are the same, you could be flairing one day and not the next, you could be in remission for many years and suddenly you have a nasty flair. RA is an auto immune disease and as such it can cause other thing, like fibromyalgia,and many other things, but don’t let me scare you. Your best defence is knowledge, be prepared and learn as much as you can about your disease. Blessings and love.