Please remind me why I take the meds.

dreamdaisy

Well, having reached the thin end of the humira wedge (not having really had a go at the thick end this time around) I whacked in the humira on Monday and shoved in the meth on Wednesday. I do my daily six sulph, I did the FA on Friday and am now on 12.5mg of steroids, which is very nearly enough. So, have I been lifted to the dizzy heights of moderately grotty? No. Admittedly this time around I do have an utterly rancid sore throat which may well affect matters (that kicked in about an hour after the meth) but I do feel that I am fighthing the arthritis nuclear war armed with the equivalent of sherbert dabs and confetti. It's all utterly pointless.

I started the meds far too late for them to make any real difference to anything. To those of you at the start of this journey I would say get what you can from the docs as soon as you can. Don't let them delay in treating you, don't let them fob you off as they did me. If you are just starting meth etc and after six months not much has altered then get yourself on the anti TNF road asap. These drugs do help much more if you get them early enough. Make sure you are in that number. DD

caterina57

Dear DD
You don't seem to be having much luck with the meds do you, I suppose though by now you are aware of what is best for you - I suppose that what suits one doesn't necessarily suit another. You are right though that the sooner the better and just because you are young when starting with arthritis shouldn't be an excuse to fob you off.

Having started my problems in 1991 when I was bedridden for 6 weeks, my GP at the time didn't provide any explanation or follow up - I was just told to take painkillers, It was only years later with a change of Doctor and Xray I was made aware of my problems - but even then no treatment - Now 20 years down the line I am told that my spondylosis has progressed too far for even physio and that I have to self manage --- I often wonder if action was taken in those early days would I be in the pain and predicament I am now.

Yes DD the lesson is if you start young insist on action,be it medication or therapy because time ticks by and once damage is done it is permanent and irreversable

Cath

julie47

Oh myy poor DD you are still having a stinker of a time, and the sore throat hasn't gone yet either.
I reckon you should go to the rheummy peeps again and have another drug review. Surely there should now be something else on the market that you haven't tried , and that may benefit you.
Please try to insist,.
I know that you feel that the drugs don't work but dd if you stopped taking them you would realize that they do. You would probably be completely bed bound. Unable to move at all cause of the pain. (I remember being sat in a chair for most of the day not able to move) and thats why hun we take them. (still have days like that but not as bad) I hope you don't think I am being hard on you.
I just wish I could help
Take care,
Thinking of you
Julie x

suzygirl

That sounds really rubbish. It is hard to see why we take the meds, when they don't seem to be helping. An infection will definitely kick off a flare so you need to get some antibiotics.

Have you told your rheumy how you feel? Do they know how much you are struggling? I know that seems obvious, but sometimes we sit there going yes fine, when we are anything but.

Sending you get well wishes and positive vibes. Have a pj and sofa day, plenty of good tv and some choccy.

Take care

dreamdaisy

Wise words from all - thank you so much, I just needed a gentle boot up the backside to remind me that just 'cos I haven't got what I want is no reason to sulk.

I did speak to a doctor yesterday about the throat, he was quite happy for me to carry on as I am - indeed it is a little better today, I no longer feel as tho I have a roll of barbed wire stuffed down my gullet. On the plus side of life Mr DD will be home soon (always a good thing) there is rugby to be watched (anoter good thing) and some beer to be drunk (always works with DD, that one!) I know that if I wasn't on these indifferent drugs life would be considerably worse, and I know I should be grateful for the relief that they give, but is it so wrong to want more? No, it's not wrong, I know that, but it is pointless. It is what it is, I am taking what I can to help, there is nothing else I can do really - I think that every now and again it does all get a little too much, is all. We all find that, don't we? Right, back on the wobbling unicycle, it's time to pedal on, to infinity and beyond! DD

jillyb1

Really agree with you , DD , I have been on humira for just under a year and feel little or no benefit from it ! After putting up with this stupid pestilence for 30 odd years ; the damage was already done by the time they offered me the " miracle drug " , my hands resemble shapely claws , my toes are almost plaited and my knees and elbows are so mishapen that I have to be folded to fit in my wheelchair ! I do have plenty to be grateful for having a fantastic family and my wonderful husband taking care of me above and beyond ; but I emphasise the point you made , DD , and urge everyone to beg for the wonder drugs as early as possible . Jillyb

need me bed

I think we all have times like that DD. You have been a great help to me my friend, just knowing you're there for me is enuff to make me keep going.

I hate taking my meds, but am almost crippled if i don't and i'm sick to death of going to the GP coz he seems to think I enjoy being a human pin cushion... sometimes i don't even feel human anymore to be honest.

I dont know what this humira is if im honest... ive never heard of it, but from what i see around here it doesnt much sound like fun... I had to come home from work yesterday I was just in so much pain i couldn't concentrate on what i was doing so took the easy option and came home to bed. Work didnt like it much but then neither do I, maybe they should try being me even for a day and having to cope with what I do. then they might be a little more tolerant of us and out Arthers... It not like we asked for him to come over and stay is it?? He's an annoying wee sh1t and always wants to be part of the action (typical bloke if you ask me)

with regard to the throat, have you tried that chloroseptic spray stuff, it worked well for me over the winter, swallowing bark isn't good especially when it makes everything feel and taste the same ... might be worth a try? sometimes my mouth just gets so sore, but i have no idea why, oh well, keep calm and carry on as per usual. :roll:

Keep ya chin up hun you know we're here if u need a rant
xx

lindalegs

I'm sorry that your meds aren't working very well for you DD :sad: but I do have to disagree with you on some issues.

When I started with RA 25 years ago Dmards weren't used then as they are now. Nowadays they're given in quite large doses once/twice a week. My drug regime then was a couple of tabs a day hence damage was done to my joints.

I started Mtx tabs in April 2008 and they've helped put my RA into remission even though I was 22 years into the disease. Mtx has worked for me - it can't reverse the damage but my pain is nothing to what it was.

I think the lesser evil of the meds (admitedly they're all quite noxious) have to be tried first before launching straight into the anti TFN route because they do work for a lot of people.

You have to recognise that, sadly, they haven't worked for you but this is just your experience and not everyone's - surely anti-TFN's have to be used as a last resort not a first.

I hope your new drug regime gives you some relief.

dreamdaisy

It is a drugs lottery for all of us, legs, I think. I am glad to hear that the meth has done for you what it should - no, it cannot reverse the damage but if it has lessened the pain that that is wonderful, a very good thing. I first tried the tablets in 03, I think, after about a year of sulph. Neither did anything much, either alone or in tandem, nor did the leflunomide or the cyclosporin (tho I enjoyed turning into a werewolf with that one!)

The anti-TNFs can be effective and those who are succeeding with them seem to be those who get them early - indeed my hospital has now reversed its approach to them and will give them after six months because they admit they work better the sooner they are introduced. Surely that can only be a good thing - this pernicious disease should be given the biggest kick in the teeth it can so it does not get such a grip. According to my meth booklet the humira is working - I just needed the reminder that it is, 'cos the reality to me is, currently, somewhat different. I suspect the pain I have is damage, I am going to ask for some Xrays to see, but there is no rush. It's not as tho the damage can be undone.

I wonder if the meth has worked better for you as you have RA? PA is not quite the same - it may be similar, but similarity may not be enough for success. Are there any other PAers out there who are finding good results with meth? I would like to know. DD

dreamdaisy

Ah, need me bed, chloraseptic throat spray - I love it! I love the taste and the numbing, it's glorious stuff isn't it? Yes, I have had a few sprays of that and indeed the throat is more comfy today, but I now have the rumblings of a lovely cough, the sort that when you do it lying down you sound like a sea lion (my sex-goddess qualities are without limit). Having had the feeling for the past couple of weeks that summat wasn't right I am now having that confirmed - whatever it was is now trying to surface through the fog of a suppressed immune system. It strikes me that healthy people lead very dull lives - just where is the challenge for them? Poor saps. DD

barbara12

Oh DD...How I wish I could help...its a good job we have each other.....only you know if the meds are any use to you or not, hopefully things will pick up for you very soon.
Sending you some very gentle hugs (((((())))) I know its not much...but its the best I can do.
Love
Barbara xx

dachshund

Hi DD.
i'm sorry you are in so much pain.
you help so many people with there pain
we all take the tabs but they dont always help its like swollowing smarties.
take care. joan xx

jayneys

Oh DD ,i do hope you feel better very very soon,im just starting the journey ,but all ready help me . JAYNE X

dreamdaisy

Smarties are more fun tho and taste better! I hope you are doing OK dachshund, and that your pain is easing a little. How are you getting on with the walker - does it help more than sticks? Logic would say yes but logic doesn't always work with this malarkey.

barbara12, thank you. I am just kicking against it all, I guess. I do know that the meds make a difference, it's just a dummy spit that the difference is not enough. I think a little petulance is OK, every now and again - I do my best to be cheerful and encouraging but sometimes . . . well . . . it does get to one every now and again. DD

dreamdaisy

Hey janeys! I've been wondering where you were, it's lovely to hear from you. How are things? I know you are new to it all so let's hope that things work out far better for you then they have for me. I am only sulking, that's all. I'll grow up again soon. DD

fayrose

Oh bless you DD. You are another one like Skezier 'n' legs 'n' all the others who are so ruddy brave when feeling like you're in the bottom of a very rancid pond and being hoiked out with barbs.

You have made me laugh, through all those horrors. I'll briefly tell you what I've been doing today, just for fun.
Have just seen that my very basic website is a disaster on certain screens, so have been spending the last few days trying to get to grips with fixing it.
Utter disaster so far. Despite hands full of pks and regular get ups and walk abouts, am now just about done for ..... and still a nobbled site.
About to shovel down a fist full of sulph, lovely eh? :roll:

When you feel a bit better (throat and chest recovering) any ideas website-wise, much appreciated.
Take it easy xxx

dreamdaisy

Oooooooooh I like a challenge. 'Tis only fair, however, to say that I know as much about websites as a hamster knows about brain surgery. What is the fundamental problem? Too much info in a small space or too little info in a huge space? Too many colours? Not enough colour? Wrong sort of typeface? Right sort of typeface but not enough of it? Too bright? Too dim? See, told you, hamster, brain surgery. Wossit for, anyway? DD

tkachev

Are there any joints replacements due DD? It could be an improvement in your overall pain if you got them sorted.

I know you must feel so frustrated taking so many meds and not feeling much improvement. I know I kept getting worse over the years despite various meds which I was promised would help. MTX was horrible and didn't seem to make much difference in the end.

I just hope something will work for you. Another anti TNF maybe?

Elizabeth (sorry typing but sleepy so probably not making much sense).

fayrose

dreamdaisy wrote:

Oooooooooh I like a challenge. 'Tis only fair, however, to say that I know as much about websites as a hamster knows about brain surgery. What is the fundamental problem? Too much info in a small space or too little info in a huge space? Too many colours? Not enough colour? Wrong sort of typeface? Right sort of typeface but not enough of it? Too bright? Too dim? See, told you, hamster, brain surgery. Wossit for, anyway? DD

Paintings and drawings Problems? ....all of the above, space, colours, typeface? ... get real ... !! get yer pencil ready. xx

nanarose

dreamdaisy wrote:

I wonder if the meth has worked better for you as you have RA? PA is not quite the same - it may be similar, but similarity may not be enough for success. Are there any other PAers out there who are finding good results with meth? I would like to know. DD

DD, what a horrible time you are having, and I imagine the hope of new drugs, then the despair of them not really working is enough to get anyone down.

You asked if anyone with PA is doing well on Meth? Well, now that I am on injected 25mg meth, I have to say that it does seem, so far anyway, to be working for me.

Granted, I managed to talk the rheumy team at long last into a steroid jab a while ago, but even without it, my pain is nothing to what it was.
I agree that the residual pain I have is from the joints that were damaged, perhaps that will never go away, but for now, I am just so grateful that I have a life again after years of being in extreme pain, and at times barely able to get up stairs, or even the sofa.

I was in two minds whether to reply or not, as I don't want to chance my luck as it were, but maybe I can give some hope to those who are just starting on meth.
I'm so sorry that none of your meds seem to take away the degree of pain you are suffering; it seems so unfair that these so called 'wonder' drugs can help some but not everyone.

I envy your ability to get back onto that unicycle; I don't know whether I would be brave enough to cope with what you have to face every day, but even when you are down, your innate doggedness/courage will never let you give up, as it's a part of you.

dreamdaisy

Oh nanarose , if the fat woman doesn't pedal she falls off and what an unholy mess that would be! For a start she can't flaming well get up unless there is the modern equivalent of Geoff Capes lurking handily nearby. I don't often get fed up but it's lovely to know that when I cannot keep the smiley mask firmly in place I can sound off and people will understand. As for the meth, well I am on 15 ml - whether increasing that would help or not I don't know. It rarely troubles me side-effect wise, and I know I am very fortunate in that. It's another thing to consider, I suppose. As for posting - thank you for answering and I am certain it won't jinx you! What else are you on - sulph etc? That does keep the P bit at bay, for the most part, for me - my last bout of P was on my soles but that has cleared (and has been gone for a while now, so I know that is another reason to be grateful to the meds).

tkachev - oh, joint replacement, what a pipedream. Two knees, two ankles and two sacro-iliac joints would go down very, very well and I wouldn't sniff at two elbows either. I remember that my last Xrays on my knees showed perfect bones but lovely white bags of fluid here there and everywhere - gawd knows what they look like now, probably the same! I think the damage is around the joints after years of unchecked synovial effusion, especially around the left knee. The right knee and ankles should be better - hopefully the meds have had a slowing effect on them but I don't really know. My ankles are the killers at the moment, they are the most painful but try as I might I cannot avoid walking on them! And so the vicious circle revolves . . . . . DD

traluvie

Hi DD..

Sorry to hear your not too good at the moment..
Your entitled to have an off day luvie... no1 perfect...
It would be impossible to be strong and positive everyday...
I really hope you feel bit better soon..

nanarose

dreamdaisy wrote:

What else are you on - sulph etc? That does keep the P bit at bay, for the most part, for me - my last bout of P was on my soles but that has cleared (and has been gone for a while now, so I know that is another reason to be grateful to the meds).
DD

No, DD no sulph, the meth alone has cleared up my psoriasis more or less totally, and I had it really bad - it covered nearly all my legs, my back, arms, scalp. ears, and other areas I won't go into! :oops:
That's another reason why I feel so much better - at least my skin looks normal again, after years of covering up. If I were a believer, I would be down on my knees praying that it stays away, especially as I have my daughters wedding next year. I dream of wearing a dress!

tjt6768

Hi DD, only just read this, you know I've been a bit busy for a couple of days burr just wanted to say, you know I'm here if you need my support hun...

Catch you soon, and if it's a kick up the bum you need then I'll put mi steel toe caps on... Just give me a weeks notice to fasten the laces, lol

bobbyger

Hi DD,

Sorry to hear your not having the great time of it at the moment.
I sometimes read everyones posts and think what am I whingeing for, there are people out there with much worse arthur than me. Just seeing how you all cope with it and put a bright face on everything is an example to us all.

Take care and I hope you start to feel better soon.

Rob

roses1

Hi DD,


Just wanted to add ((((hugs)))) for you , sorry you feeling so crap we all get days like that dont we, or is it weeks :shock:

Heres hoping you feeling much better by now take care and keep plodding eh?

sorry dont know anything about the drugs other than mtx that really helped my mom.

Rose x