RA newbie

AnnaMilton

Hi, long time reader, but first time poster, so please excuse for my rant and go easy. Since diagnosis (one year back), I am yet to come to the terms that living with RA is daily struggle with pain, stiffness, swelling and feeling overwhelmed. No doubts, medications help you to certain extent, but I am not used to fit them in my schedule as regular as it should be (taking regular medicines was never part of my schedule before). Pain in the knee is constant often causing me sleepless nights and missed time from work, which I could not afford being a single mum to toddler . I am currently on prednisone, vitamin D and paindullers occasionally. Also planning paleo diet, any success stories here?


P.S : I have started observing nodules on my right thumb, and read it’s a sign that your RA is progressing, no pain or swelling yet but how terrifying it is, hope you all can feel . Anyone with such experience here?

Anna

[Deleted User]

Welcome to the Arthritis Care Forums.

There are lots of lovely people here with a wide range of experiences with arthritis and the problems which come with living with the condition.

As a long-term 'reader' I am sure you already have a feel for the forums and I look forward to seeing you posting.

All best wishes
Mod AC

stickywicket

Hello Anna and welcome from me too. Coming to terms with a chronic disease is not something anyone can do overnight. Indeed, it's not a once-and-for-all thing at all but ongoing.

You are right that the meds only help up to a point but, unless you inadvertently missed something, you don't appear to be on any med that will modify your disease. Have you not been offered eg methotrexate or sulphasalazine? If not I'd want to know why not as these DMARDS are what hold back the RA. Most of us arrive at a diagnosis of auto-immune arthritis from a 'no regular meds' position but, alas, that has to change if we are to put up a fight against it. (At least with methotrexate it's only once per week.)

I don't think there is any evidence that the Paleo Diet does anything for RA. If there was I'm sure my rheumatologist would have recommended it years ago. A normal, healthy Med-type diet is what is usually advocated.

I've had rheumatic nodules all over the place. There are no magic wands but the meds are our best bet and pred is not a long-term solution. In your situation I'd make another appointment with the rheumatologist and sort something out. It might also help to read our 'Acceptance' thread above. Good luck.

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. I don't know how old you are but my guess is that you have spent the bulk of your life not having to think about taking medication so no wonder it's a shock. I've spent the bulk of mine taking medication so to me it's nothing new.

I have two kinds of arthritis, an auto-immune (in my case psoriatic) and the joint damage from that ( it went untreated for five years) has led to osteo too. You've been diagnosed with RA but make no mention of any DMARDS (disease modifying anti rheumatic drugs) which is puzzling me. When the docs eventually began to suspect I had some form of inflammatory condition they started me on sulphasalzine (a non-steroidal anti inflammatory drug or NSAID for short) and then I began tablet methotrexate which is a DMARD. This type of pairing is the standard first step - your current regime is not dealing in any way with the root cause of the condition, i.e. your over-active immune system.

Diet is a popular option for those who are new to this malarkey and may be fearful of the medications. By all means give it a go but don't expect glittering results; it may ease some of the aspects of the condition but it won't stop its progression. It's better to eat a healthy diet that's good for all of the body and to gently exercise (that doesn't mean an hour thrashing it at the gym) to help keep the body as flexible as possible.

Adjusting to any type of continual pain is far from easy but I have reached my slightly twisted version of nirvana in that I cannot remember being pain-free. I began with one affected joint and now have around forty so that's little wonder! I am coming to the end of my eighteenth year of living with arthritis and am fully resigned to what it is, what it does and how it does it - the 'when' always catches one by surprise though. Any form of arthritis is degenerative and progressive, in the case of OA one has to wait until the joint damage is such that a replacement can be offered (if it's the right sort of joint) but for the auto-immuners we need the immune-suppressant meds to damp down our over-active immune systems.

I am 55 and have retired but I can appreciate that it must be very difficult for you to work, raise a child and have RA - it can be done though, and I wonder if you should have a drugs review with your rheumatologist: quite a few of us take Vit D but that is a supplement, prednisolone only masks the condition and as for the pain relief, well, I usually keep mine to four 30/500 cocodamol per day but due to the current bout of chilly weather I have upped to the full quota because life is totally miserable at the moment thanks to the OA. De nada, it will pass, everything does. DD

stickywicket

I very rarely contradict DD as she knows her stuff but sulphasalazine is a DMARD not an NSAID.

dreamdaisy

:oops: I thought summat wasn't quite right when I typed it but couldn't work out what! I am sorry, I meant to put naproxen as the NSAID. :oops: DD

theresak

Hello, and welcome - it`s nice to meet you, though I`m sorry you`ve become a fully paid up member of the RA Club.

As others have said, you should be on some sort of drug regime - this can be a long & frustrating process while you wait for the right one/combination to have some impact on your RA. There are lots of drugs out there - I say this a someone who, prior to diagnosis, rarely took so much as a headache pill!

Coming to terms with the RA is not something which happens quickly - you are, in essence, grieving for something you`ve lost, while being anxious about your future. The best advice I can give is to take things one day at a time - not easy, I know. Knowledge is also a good idea - learn what you can about RA, and how to adapt your life, so that it doesn`t control you.There is a lot of info to be found, in booklet form and on forums such as this one. If you have questions, we can usually help.

Pardon me if I`m a bit sceptical about diets - if there was a definitive one, which actually worked, we`d all be following it, but most of us just try to eat a healthy, balanced diet each day.

Most new patients these days are usually offered methotrexate, sulphasalazine, hydroxychloroquine or a triple whammy of all three. When I was diagnosed I took the first two, plus folic acid. I was also given a couple of steroid injections to calm things down while giving the meds a chance to work. You need DMARDs to arrest the progress of the RA.

Do keep posting, and let us know how you go on,

Tezz x

LignumVitae

Hi Anna

Welcome to the forum where we always go easy on fellow arthritics! It takes a while for the coat of arthritis to become something you can easily wear. Nobody wants it but then, we don't get a say. I have two types of inflammatory arthritis and two toddlers so I do understand the impacts of these things on life.

I think fitting drugs into your life becomes easier once you are on a combination that works because they make things a bit easier or better. I think it is worth getting back to your GP/ rheumatologist and discussing medication as a first step. Once you start on the road to treatment it might take a while to find the right combination but it makes accepting and living with arthritis much easier.

I looked into the paleo diet out of interest, not because I planned to start it but because there was much said about it. There is no clear evidence of it being a way forward in treating or managing RA and there is a growing body of evidence that it is actually a bit of an unbalanced diet that can have impacts on heart health (it has a high cholestrol content). I found quite a few medical papers talking of it's risks and none expounding it's virtues. I hope that is useful for you. Arthritis Research does quite a useful page on diet and seems to advise that a meditteranean or vegetarian diet (if well balanced) may help but not cure or manage RA.

AnnaMilton

SW: That gives me some piece of mind. I have note down in my diary about meth and sulfasalzine and will ask my rheumy in next appointment. (You said, Meth once per week - sigh of relief :P ).

LignumVitae – 2 toddlers and inflammatory arthritis?? It seems you have lot of things to deal with. I get down easily while looking after my single toddler, I think its fatigue that’s associated with RA, is pulling me down. Sometimes, I do feel regretted, that I am not able give my DS much outdoor pursuits and trips . BTW, can I take opportunity to ask you how you have managed to get pregnant with your RA? I mean, it’s pretty tough, right?

[Deleted User]

Hi Anna
welcome to A/C from the mod team,arthritis has effected us all and many on here have good advice - if any technical advice is required just ask,enjoy thhe forums and remember were here to help.
modA

stickywicket

Yes, we only take it once per week and I think you should ask about that or some other DMARD. In fact, if you don't have a rheumatology appointment in the near future, I'd ring and ask for one.

Many people have struggled to get pregnant as it's important to be off the DMARDS etc for some months before even trying. Maybe you should work out a plan with the rheumatologist.