How does RA progress?

kaylion

I was diagnosed with RA at the beginning of the year based on wrist and neck pain and positive anti-ccp and rheumatoid factor. I have since had a steroid injection on my wrist which is beginning to wear off now - other than that I am on diclofenac three times a day.

My question is, how does RA progress? I am now getting pain in my big toe, at the front of my foot where the leg meets my ankle and aches and pains in my hip and knee. Are these typical? Is it a normal part of RA to have these sorts of pains (especially my ankle/foot - that seems very weird to me!). Is this the sort of timescale that RA progresses at.

I suppose at the moment I am attributing everything to RA, but wonder how much of it is due to the condition and how much is every day aches and pains. I am pretty certain that my toe is to do with it, but does anyone else have pains like this?

Thanks

frogmorton

Hi
It progresses differently for different people...not much help that was it!!!
Suggest that you make notes so you can discuss with rheumy when you next go. Are you not on any DMARDs yet? That would/should slow it down a bit.
I do know what you mean though about blaming everything on the RA!!
A better expert than me should be along soon.
Take care
Toni x

joyous

hi there i got ra just after my 30 th birthday 14 years ago now i stated off in my feet i bought that many pairs of shoes cos i thought it was that then it went to my fingers and wrists knees went to gp tests came back negative was at the dr's every wk trying diff drugs nothing worked cost a fortune an all . eventually test came back pos got app at the hos been on that many diff drugs over the years as nothin worked for me , i have it every where from my head to my feet at the mo its stable had a new shoulder in 07 with muscle repair seems ok the drugs im on are predisolne , mxt inj, enbrel injec , celebrex, plus other tabs one for the tum as i got terrible indigestion another for allergies thru talkin the enbrel plus folic acid pain killers etc . i still suffer alot with my feet cant walk to good or stand for hours on end its symetrical one day it could be your left side next it will be the other and so on . you have good days and bad the tierdness is another thing which we all get rest on them days take it easy pace yourself all the time . house work will be still there the day when your ok etc its all trial and error with ra good luck joy xx

debsmartin

Hi

My RA progressed quite rapidly, I only started with abit of pain in me feet, but this went to my knees and then started on my fingers and wrists, I was quite fortunate that my doctor diagonosed quite quickly RA started with Diclofenoc but then when I was seen by Rhematology was started on Sulphazaline, unfortunatley that didn't work and made me quite ill, I was switched to Methotrexate and my painkiller altered to Naproxen with the aid of a few steroid injections my pains seem to ease off quite abit, just been flaring up again so Docs have added in leflunomide which thankfully is working really well for me. I felt that getting onto DMARDS has helped me alot, as everyone mentions the tiredness is a major problem, my family affectionatley call me noddy, cause I seem to nod off very easily. Hope you will soon get sorted. (sorry that this is abit long)

debs

lindalegs

Hi Kay,

There are different strains of RA and some are more aggressive than others. It mainly attacks your smaller joints first being your hands and feet but you can also start with a major flare where to goes into every joint.

There isn't a timescale on how quickly someone can become debilitated with it (if at all) and with Dmards and the way they're used nowadays the progression of RA can be slowed down immensely. I'm on Mtx 10mg a week and it's put my very aggressive RA into remission after 23 years of having it - wish they had this treatment when I first got it :roll:

Hope this helps answer your questions.

Luv Legs

colinone

Hi Kay, well its a hard question and i guess each one would have a different answer Although legs is a short answer it is probably the nearest to the answer. We are all different and there are lots of strains of RA so your in the lap of the gods. Take care and try not to worry to much. One of the symptoms of RA is that it does move about your body.
Colin

kaylion

Thank you so much everyone for all your posts. I suppose one of things about coming to terms with RA is coming to terms with the unpredictability of it. There doesn't seem to be any standard progression as far as I can see, it looks like everyone is different.

I have a hospital appointment in a couple of months and I know that my consultant wants to start me on methotrexate. This terrifies me! Can I refuse to take the medication? If I do, will they still treat me? I really don't want to be in pain any more but the side effects of this drug sound truly dreadful .

Kay

plmb48

kaylion wrote:

Thank you so much everyone for all your posts. I suppose one of things about coming to terms with RA is coming to terms with the unpredictability of it. There doesn't seem to be any standard progression as far as I can see, it looks like everyone is different.

I have a hospital appointment in a couple of months and I know that my consultant wants to start me on methotrexate. This terrifies me! Can I refuse to take the medication? If I do, will they still treat me? I really don't want to be in pain any more but the side effects of this drug sound truly dreadful .

Kay

hi kay
dont think of metho this way at least try it if its not for you dr will take you off it but i know it has helped lots of us i have taken it for 4 years now .i dont think i would like to stop it now but once again we are all diffrent and react diffrently to the same drugs .(had RAfor 29 years) good luck pauline

lindalegs

Hi again Kay,

Yes you can refuse Methotrexate but think about it first.

The side effects are worrying but you will

a) be started on a low dose and then work up to a higher one
b) be monitored closely with blood tests and if anything shows up they will stop you taking it.

Some side effects like sickness, headaches and hair thinning (which you may not get) can settle down as your body becomes used to the drug. Sickness can be helped with antimetics until it does settle.

Methotrexate is an excellent drug for pushing the arthritis into remission and preventing joint deformities. I've been on it over a year and am responding really well, no morning stiffness at all and only a few bad days when my joints are just a nuisance not the day after day drugery of pain.

Believe me it is worth a try but the choice is yours and nobody will force you to do anything you don't want to.

Luv Legs

debsmartin

Hi Kay

I too echo the advise of others not to rule out methotrexate it has worked really well. I too was very scared about taking it but my RA was so bad I felt I had to give it a try and I am so glad I did. I now take 20mg a week and can honesty say I haven't had any of the scary side effects my consultant added folic acid straight away and I now know from chatting on here that folic acid does help. I suppose the main thing to remember though is that everyone is different. I had a bad reaction to sulphsalzaline which I know works very well for alot of people here, so I suppose until you have tried it you don't know how you will react.

debs

rella1965

kaylion wrote:

Thank you so much everyone for all your posts. I suppose one of things about coming to terms with RA is coming to terms with the unpredictability of it. There doesn't seem to be any standard progression as far as I can see, it looks like everyone is different.

I have a hospital appointment in a couple of months and I know that my consultant wants to start me on methotrexate. This terrifies me! Can I refuse to take the medication? If I do, will they still treat me? I really don't want to be in pain any more but the side effects of this drug sound truly dreadful .

Kay

Kaylion

I was in a similar position to you 6 months ago, and have still not been diagnosed (by a consultant) as the flare I had to start off with had gone by the time I saw the rheumy.

Am now onto my 2nd rheumatologist in another hospital, seeing him in a months time ( and luckily?) have been in a flare up for a couple of weeks now and hoping it will last. Diagnosis is often very difficult and time consuming business with this disease.

I remember feeling the exact same way as you about the drugs etc, but my second flare up is much worse and I have also now experienced the exhaustion and fatigue that I have read so much about, I would be glad of anything at the moment if I thought it could control the course of RA. Good luck and keep in touch,

woodbon

hi, just popped in to say hello, I have OA, so I'm not so helpful to you. Glad you'v joined the site. Love Sue

joyous

wow hair thinning i wondered why my hair had got thinner over the years dont no how long ive been on methe started on tabs at first got one of them lumps you can get on my arm near my elbow looked like an extra elbow its gone now im on the injection now have been over a year have enbrel inj as well all seems to be ok with them . one thing bout hair thinnin dont have to shave my legs as much or under my pitts good luck joy xx

alibongo

Hello

I know how you feel about methotrexate I was terrified of taking it and after taking the tablets was sitting there waiting for something awful to happen. But because I was so desparate for things to get better I just took it.

I have been on it for 18 months now and the dose has gradually increased to 25 mg a week I go for my blood tests once a month and so far so good. I sometimes have a bit of an upset tummy when I have taken it and I did have a break out of spots on my face when I first started taking it but that has settled down now.

I's not a miracle cure I still have flare ups and at the moment I'm struggling with my arms and fatigue as I am mid flare up. But in general I can do a lot more than I could and although I'm struggling at the moment it would be worse without the methotrexate.

It's a personal choice so you need to speak to your rheumy and find out what the implications are if you do take it and the likely outcome if you don't you can then make an informed decision.

Good luck with whatever you choose.

Alison

issymknight

I like most people was apprehensive about going on methotrexate but I have now been on it for 5 years. My rhuemy put me on it nearly straight away after being diagnosed. I had a few side effects nausea being the worst but doctor gave me anothe tablet to help with that. I have had blood test every month since being on Methotrexate and have been called back by GP twice. This has helped me and now I look at it this way. Due to being on a dangerous drug I have my blood monitered every 4weeks with a copy going to my GP and rhuemy so I get a mini MOT every month and if anything appears due to the blood test I'm contacted within 2 days by letter telling me to make an appointment to see my GP. This gives me peace of mind that I made the right decission as my illness is not as bad as some. Yes I do get flare ups and I'm on patches for pain and steroids during flare ups, but I'm still working and living rather than in the beginning when I was in constant pain and constant flare ups, I really thought I would have to give up work. So I would say discuss your fears with your rhuemy and remember that you are monitered on Methotrexate unlike all the other tablets we take for our RA. Only you can decide what is best for you. I can only tell you of my experiances hope it helps.

daisychain

Hi Kay,

Just want to say that I understand how you feel about taking methotrexate and there are many other posts on this subject.
I delayed taking mtx because I was so worried about the possible side effects. I made do with the anti inflammatories and had a few cortisone injections. However it reached the point with me when really I had no choice because Mtx or another DMARD is the only option available and is the recommended first line treatment to prevent joint damage.(although there is no predicting how severe damage may be) Anyway I started Mtx 5 weeks ago , dose 10mg with food and take 5mg folic acid 24 hours before . I take the medication in the late evening before going to bed. I expected the worst but thankfully I have been fine other than some short sickly headaches and an upset stomach (brief attacks) the first couple of weeks. I am still taking the pain killers as the mtx takes a good while to work.

I will have a blood test every month to monitor and I find that reassuring. Mtx has been used for many years and I believe it is even prescribed for children with RA.

Anyway , I wish you well with your decision, in my experience consultants are reluctant to discuss side effects possibly because it is the only treatment they can offer. Personally I will resist increasing my dose unless I am given very good reason, I have always done my own research and follow my instincts. I promised myself that if mtx did not suit me I would stop taking it but at least I would have given it a go. In the meantime I am still working and generally managing ok. Best of Luck .

sherry33

Hi kaylion

Please don't worry too much about drug treatment, there are side effects to most drugs and only a few people suffer with them. I'm in my thirties and have been on metho for nearly two years now. I take 25mg once a week, sometimes I feel a bit sickly or a bit washed out the day after but generally I feel ok, I had a flare up around Christmas that just wouldn't settle so I had Sulphasalazine added gradually which seemed ok until I got a lot of mouth ulcers and a sore mouth in general so that was stopped and I had to have extra bloods done just to check. The ulcers have settled etc. so I'm going back on Sulpha next week again. The benefits of the drugs definitely outweigh the side effects but everyone is different and I'm sure you'll have your blood done regularly, I think I've only been called back 2 or 3 times in the time I've been on metho and it was just a check.
My RA sounds a bit like yours, mine started in my wrists just after I had my little girl and they looked at carpal tunnel etc. then I had a steroid injection and it was just put down to strain of carrying my little girl around. I then had trouble with my feet and soreness under the balls of my feet, then sore toes, put down to impact of jogging etc. to get rid of baby weight!!!! Then dodgy knees, possibly a dicky elbow or shoulder thrown in somewhere!!!!!!! Generally just a wreck!!!!!Finally a podiatrist sent me for blood tests as he thought my toes looked to be separating and I was diagnosed but these various symptoms all occurred over 5 years before everything was put together.
I was really worried about taking so many powerful drugs, will I glow in the dark etc. but there are so many people who have been on drugs for so much longer on this forum and they are all so helpful, don't worry just make sure you ask all the questions you need answering and ask all the other brill people on here for help and advice as I spend hours just reading their advice and help to others if I have any worries! Take care xxx

page35

kaylion wrote:

I was diagnosed with RA at the beginning of the year based on wrist and neck pain and positive anti-ccp and rheumatoid factor. I have since had a steroid injection on my wrist which is beginning to wear off now - other than that I am on diclofenac three times a day.

My question is, how does RA progress? I am now getting pain in my big toe, at the front of my foot where the leg meets my ankle and aches and pains in my hip and knee. Are these typical? Is it a normal part of RA to have these sorts of pains (especially my ankle/foot - that seems very weird to me!). Is this the sort of timescale that RA progresses at.

I suppose at the moment I am attributing everything to RA, but wonder how much of it is due to the condition and how much is every day aches and pains. I am pretty certain that my toe is to do with it, but does anyone else have pains like this?

Thanks

Hi
i was diagnosed with RA end march, i have the ccp anti body thing too. it all started in my foot nearly a year ago now.
it quickly progressed to my hands, shoulders,neck, hips, and knees.
i started taking plaquenil (its a DMARD) 6wks ago hasnt started to work yet but hoping it will, they take about 3months to get going.
if you really dont want to take the DMARD you have been offerd there are other ones, but i think its important to take one to try to slow down the RA.
Wish you well whatever you decide.

kaylion

Wow, you really are a lovely bunch! Thanks so much for all the advice.

I think the problem is that when I am having a good day I start to question whether I need any other drugs as I can manage quite well. Then I have a bad day and I would take anything!

I think that I will give methotrexate a try, as debs said - until I try it I won't know how it will work for me. Quite liking the idea of some hair loss though - depilating these days is like painting the forth road bridge!

I think you're all brilliant. Thanks again

Kay

debsmartin

kaylion wrote:

Wow, you really are a lovely bunch! Thanks so much for all the advice.

I think the problem is that when I am having a good day I start to question whether I need any other drugs as I can manage quite well. Then I have a bad day and I would take anything!

I think that I will give methotrexate a try, as debs said - until I try it I won't know how it will work for me. Quite liking the idea of some hair loss though - depilating these days is like painting the forth road bridge!

I think you're all brilliant. Thanks again

Kay

Hi Kay

I think you're right to give it ago, the one thing that keeps me positive is that I have so many checks at the hospital surely nothing can go wrong.

Take Care
Debs

ichabod6

Arthritis Care publish a brilliant self management book
called the Arthritis Helpbook. It has two comprehensive,
well written and informative chapters on the drug scene.
It is written by two Americans and some of the drugs
are given their American brand names but it is quite easy
to tie them up to the UK equivalents.
I found it very useful initially and still refer to it whenever
there is a proposed change to my medication.