Question regarding symptoms!

keith1971

Hey kids, hope you're all well. Sorry for my forum absence. I have been reading the posts but there hasn't been anything I've really felt able to positively contribute to.

Anyhow, I'm doing okay taking my sulfa, have been on it for over 2 months now. Generally things are fine, just a little achey & stiff, some days worse than others.

My question is regarding the meds & what I should expect from them, i.e. if they're working properly should I be totally symptom free? My ESR & CRP last month were all 'normal' but I still have the aches.

Is this what everyone experiences?

Thanks for your time.

x x

madwestie

Keith, i don't take sulpha i take Methotrexate but even when my esr was really good i still had sypmtoms, i think that the meds stop things getting any worse and reduce some of the inflamation but they can't undo any damage and they don't work as pain killers.
My ESR is not as bad as it was but not a good as it could be and i get a lot of soft tissue pain.

Hope things settle down for you soon.

Tracey

barbara12

Hi Keith
I have OA so I dont take the same meds, but I do want to wish you well with it all, and I am sure others will be along soon with some answers.

constable

Hi Keith,

It's good to hear that your meds are working for you. I suffer from OA so I cant help. Just wanted to say i'm pleased they are working.

Karen xx

dreamdaisy

The meds never achieved anything of real note, I think for me it was far too little and far too late. There are a very lucky few for whom a steady dose of sulph or meth does the trick and they are virtually symptom-free, but I reckon for the majority all the meds do is take off the edge, perhaps yield better blood results and perhaps ease the worst of things, but their arthritis remains overall a problem. I had some time on sulph and meth and my markers were still in the 160s and 170s. They are considerably less now thanks to the humira but the pain etc has never gone, and never will.

No-one can tell how things will develop or what will happen, no-one can say how fast or how slow things will be. Each and every one of us is different in how we react to the drugs and in what the drugs achieve. The fundamental problem is they are not a cure, not even the fancy biologics. DD

keith1971

I'm aiming to be 'one of the lucky few' then DD!

madwestie

Keith i really hope you are one of the lucky ones.
I will keep my fingers crossed for you (well if i could) so my virtual fingers will be crossed...
Tracey

dreamdaisy

And I jolly well hope you are! I hope all is going well with the sulph and that you can see/feel a difference. The drugs can take a while to build up in one's system but it all sounds good so far - if you are just a little achey etc that ain't too bad, not really. Good luck! DD

frogmorton

Keith!!!!!!!!!!

was only saying this morning you are conspicuous by your absence!!!

good to see you hope the family are ok.

I think l read once that remission is something like less than 10 mins joint stiffness in the morning. I am hoping you are one of the lucky ones - l consider myself to be lucky too (except sometimes..... )

Love

toni xx

MissKat

Hey Keith,

I'm like you, bide my time keeping up with everyone's lives / posts but only contributing when I feel I may be of use!

I think you joined this forum just after me, and so I'm a month or two ahead in my treatment...

My last visit to the consultant made me realise that my expectations of medicine were rather high, and that in fact the meds weren't going to cure me. I was perhaps slightly naive, but ever wishful thinking

Okay, so I never really thought I'd be miraculously cured... but I did think that things would get far better than I feel they actually have. I didn't think I'd still be using the handrail at the tube station steps, or holding my boyfriends arm to steady myself getting up off the sofa, or needing a quick sit down after a little while on my feet...

I know I am one of DD's lucky ones, in that I am off the steroids now, and am coping okay... I only have maybe the 10 mins of stiffness in the morning until I get going... but in the little knowledge I have after 9 months of Arthur, I do feel it does only 'take off the edge'. There are still bad days...

Still, you know when I think back to October, being sofa bound and in so much pain... these meds have actually done a bl#*dy good job eh?!

My bloods etc etc yah de yah de, have all been 'normal' too...

My last trip to the consultant prompted my radical diet efforts at healthy eating... if the meds weren't going to cure me I was going to make sure I was doing everything I possibly could to help myself!

So, not sure if I was of any use there whatsoever?! Feel I have ambled on somewhat... sorry!

MissKat x

tkachev

We are all different but for me sulfa helped for 3 months then the stiffness returned. Humira really helped tons. I think after years of struggling to shuffle anywhere, not sleeping due to pain some meds can make you feel more fluid. But if you have damaged joints they tend to be more knife-like, sharp,sudden pains.In some joints the pain has gone completely(shoulder and wrist and sometimes knees).
But you should feel more fluid if a med is working in any joints.Thats how I would describe it.

E x

keith1971

Thanks for your input everyone, always interesting to hear everybody's individual take on things.

I don't think there's anything wrong with thinking positive & hoping that you're gonna be one of the lucky ones, especially if you're newly diagnosed or going through the early stages. Ask me again in ten years time & I may be looking at it all from a different perspective but right now, let's hope for the best!

MissKat, I'm too clued up to believe that just popping a few pills every day is suddenly going to cure me but on the other hand I do have faith in medicine & trust the opinion of my rheumatologist......they can't all be heartless & clueless right!?

How are you fairing with the diet btw? I've been following quite closely the info from that Food Doctor book (aside from the occasional junk food lapse!) and generally feel better for it. Have you cut out anything specific? I'm 99% gluten free, eating lots of berries, nuts, lean meat, rice, goat's milk, smoothies etc. - seeing as 70% of the human body's immune system is in the digestive tract it makes sense to feed it with the good stuff & keep the bad stuff to a minimum.

Toni, you're very sweet! All's well with the family thanks. It's my son's 3rd birthday this weekend so have been busy present buying & party planning.......it'll be total chaos mind you! Hope you're well yourself x

x x

MissKat

Hey Keith,

Yeah... Diet going okay, not managed the non gluten bit though... doing well otherwise... fish, fruit, veg, tofu (!), nuts, seeds... I even made my own granola the other day

Sounds like you're doing good

karydoughty

I have had RA for about twenty-years (when pain began) but wasn't diagnosed until twelve years later so I'm not sure if the pain I experience now has to do with time or severity of the disease. I had to stop NSAIDs and methotrexate and was put on steroids because of MRSA and now able to take Orensia and can tell energy is better pain not so much. I've been told it will take three months to see a difference.

I do have to take Ultram and Lortab in order to sleep (still not so good) but I put the brakes on uping the dose just out of fears of addiction. I try to find hobbies to keep my mind occupied. In the states we have aqua therapy in heated pools. It does help with back and leg pain temporarily. I understand your frustration. I learned not to be polite with my doctor but let him know how bad things were and he has always looked for a new med.

dreamdaisy

Hey MissKat, it's good to hear that the junk is working for you - I am really pleased and I hope it lasts. Personally I can see nothing wrong with using handrails - that is why they are there - especially if you can still do stairs like a grown-up, and as for the boyfriend's arm - ye gods, be thankful he offers it! Mr DD just sits back and watches as his demented beetle of a wife stirs the silver sticks into action and - teeter-teeter- we're off! (I think the novelty of being a gentleman has long worn off, bless.)

I think we all begin the meds with the view that 'Hey! This is it! This is what docs do, they give you pills and it all goes away!' I remember thinking that when I started the sulph in Jan or Feb 02. I remember thinking that when I started the tablet meth, then the leflunomide, then I began to realise what a stupid mug I was being and with the other meds I didn't bother to think anything. I do wish the consultant at the time had had the cojones to say 'these are the meds I can offer, they won't cure, they won't stop, they try to allieviate but basically it's all downhill but how fast I don't know', that would have saved me a lot of wasted time spent on being hopeful then devastated.

You know that poem about your mum and your dad, 'they don't mean to, but they do'. Docs do that. They never tell you what is what, but on thinking about it and in their defence, I suppose I can see why. For all he knew at the time I could have been one of the lucky ones. Me? Nah - why change the habit of a lifetime? I suppose they cannot say these drugs will work 'cos as we all know, from being on here, we all react so differently.

I think one of the problems with the forum is that those for whom stuff is working disappear. They kinda get their lives back and so leave, taking their little beacons of light with them. Must be nice but rest assured Daisy ain't going nowhere!

Stay well, Keith, MissKat, williamlargs and all you other lucky people. DD

MissKat

Ah DD... you did make me laugh

I like to think I'll always be here on this forum too... hopefully shining that proverbial light, but in the meantime it's a good place to rant eh?!

MissKat x

frogmorton

keith1971 wrote:

Thanks for your input everyone, always interesting to hear everybody's individual take on things.

It's my son's 3rd birthday this weekend so have been busy present buying & party planning.......it'll be total chaos mind you! Hope you're well yourself x

x x

Keith l am just fine thanks how lovely a third birthday

I hope he has a lovely time

Love

toni xx

sugarbuttie

I was diagnosed last year (sero neg). Been on hydroxy since Oct 10 & started sulph as well 5 weeks ago. Had 2 steroid injections too. I am MILES better than I was when I first went to GP in tears many times about my stiff, painful hands.

My hands are a lot better but I now suffer with achey knees, shoulders & feet. I take the mildest co-codamol daily to stave off the pain. No day is 'symptom free' but some are better than others. I still manage to work & look after kids but I have a lot less energy. I am forever rubbing Deep Relief gel on!!

I am hoping the drugs will 'get me back to normal' but maybe I am expecting too much. If they just keep me as I am now then I will be happy cos I can manage. I DO worry a lot about my future & sometimes it gets me down. I am trying to remain positive & thankful for what I have (not focusing on what I have not).

x

skezier

Hi Keith,

Its there really to protect your joints form erosion but if it brings it under control and also helps you feel better thats the icing on the cake. Its not a cure though and can flare off again but for the time it's quiet its nice to enjoy it.... they tell me but mine has yet to be got under control and I have some erosion as well.

Its all the luck o the draw really but more people are helped and feel better than don't so thats a good thing to know. Cris x

caprica

I wondered that myself, Keith. I'm 18 months in and it's quite difficult to judge how you are unless a certain amount of time's passed and you can maybe compare it to another long period of time. Like at the moment I'm judging this jan-may compared to last year's jan-may and thankfully I can quite clearly say I am having a much better time of it. Like last year in those months I had at least 3 instances of finger flares where as this time I've had none (touch wood). I don't know if that's due to the hydroxy finally kicking in or if it's just a good patch but I'll take it, whatever it is!

I'm not 100% symptom free but I'll maybe say I'm 90-95%. And you know..at first I was chasing the 100%..but now I'm more than happy to be as well as I am. If I stay like this for a long time I'll feel incredibly blessed. I wish the same or even better for you.

ichabod6

Medication is only one of the 12 tools listed
in the AC self management tool kit.