Expectations

shiningstar

Hi All

sorry I have been absent this last week have been feeling rather glum so felt it best I kept to myself and didn't depress you all.

Can anyone help. I have been on Sulfa (also tried MTX and Hydroxy) for 3 months and am not sure what to expect...surely the whole point of these drugs is to reduce inflammation and hence reduce pain. Are my expectations too high jyst thought I would feel better and wouldn't still have to take painkillers all the time. There seem to be so many of you on triple regimes but are still in pain...surely that means they are not working!!! I have a few days where I think oh alright think im ok and then POW feel like crap! Are my expectations too high...is this as good as it gets! I would love to hear anyone elses experiences that would maybe help me to get this in perspective.

Hope youare all having a pain free day...unlikely but one can hope.

Much love SS

dreamdaisy

It's tough, we all know that. I'm sorry, SS but I am not going to dress things up and give you false hope. I thought when I started humira I would be able to drop some of the other stuff - indeed my rheumatologist told me so. One big, fat, lie. I now take humira in addition to all the other stuff, and indeed she upped my steroids to get me thro a flare and now I cannot reduce the dose, well, not yet, anyway. There is no cure for arthritis, we inject and swallow only to alleviate symptoms, not necessarily pain. When things are bad, come and tell us. We know what it is like, we understand, we will listen and try to cheer. Having said that, I've just gone and done the opposite. Blast. Too honest for my own good. Please accept my sincere apologies. DD

cthornley

Sorry but the DMARDS (mtx, sulpha)aren't actually to reduce inflammation although for some this is a side effect, they are to slow down/ reduce the progression of the disease and reduce the permanent damage to your body. So although they stop it getting worse or slow down how fast it gets worse it doesn't mean that the of pain existing damage always goes away....for this you generally need to treat it in combination with pain killers and NSAIDS...so you do end up taking combinations of therapies to treat all the cruddy stuff the disease lands you with.
DMARDS are also often taken in combination with each other as they can limit the side effects by prescribing in lower combined doses than they would as individual drugs.

I hope that makes some sense and isn't too depressing. Look at the drug advice sheets on here, nras, and other arthritis charities for more information if you are interested.
hope that helps
CHrissie

marion1952

Hi Chrissie

I didn't realise that.. I thought they dampened down the inflammation. I must be one of those people for whom they did reduce the inflammation (I am on Mtx)..

Marion

cthornley

marion1952 wrote:

Hi Chrissie

I didn't realise that.. I thought they dampened down the inflammation. I must be one of those people for whom they did reduce the inflammation (I am on Mtx)..

Marion

They do for some people because the disease activity is reduced so is the inflammation. However unfortunately you can still get inflammation from existing damage or just the reduced activity hence the need to combine therapies for some of us. I think that RA just likes to be difficult :roll: , nothing with this disease is ever easy :?
Chrissie

dreamdaisy

I take sulpha, and that keeps the psoriasis at bay. I take meth to please my docs- they think it supports the humira. Bless 'em, innocents one and all. What helps my arthritis is the humira ( in terms of reducing inflammation levels) and oral steroids (to counter-act the flare I am currenlty experiencing). Co-cods and tramadol address the pain. The arthritis does what it does, no matter what interference the docs try to throw in its path. I just live with it. DD

dorcas

Hi SS

sorry you've been going through a bad 'blip' :roll: but it nice to see you posting again.
we miss peeps when they go awol and don't know what has happened to them..... but are always, equally delighted to see them back.

I thought Chrissie's explanation of how the different meds work and how they support and interact with one another to slow down arther's progress and reduce inflammation was so clear and helpful.... THANKS Chrissie.X

Like lots of other peeps I've been on various combinations of meds over the years.....
I have long since left the worrying about which/ what meds to my rheummy team, as I trust they will respond to my changing needs (arther's variance's) and decide, with me, what's best by way of treatment. So far this has worked well for me.

Arther is an unpredictable disease that has no 'cure' and is difficult to live with... but I find the help, support and friendship of the good peeps here on the forum invaluable.

When you are feeling low, confused, angry or need to talk...post here...we are all the same and know how you feel.

Iris x

shiningstar

Thanks DD, Chrissie and Iris for you replies...that has helped to put it more into context. I guess I was hoping for pain free and for most people I guess that it not going to happen. Will up the pain meds to try and get more relief which in turn I guess will lift my mood.

Does anyone know when the people talk about going into remission on anti TNF's does that mean they have stopped the TNF or are just pain free while taking it? Hope that makes sense.

On the plus side have been for a swim this morning...tying to lubricate the joints and they do say exercise gives you energy...unfortunately I just feel tired..but hey ho perhaps ill try and go more often and then start to see some benefit.

Love SS

speedalong

Hi Shiningstar, no words of wisdom to offer, just sending you some cyber support.

Speedy

dreamdaisy

I've always understood the 'remission' word to mean that the arthritis has not been active for a while. It is not connected to less/no pain, just that a flare hasn't happened. DD

woodbon

Hello, I don't have RA, but I can understand that you are feeling very depressed at the moment. The place to come when you feel bad is here, we all have been through ups and downs and suffered depressions at times. Don't think you'll make us feel worse, it only makes me feel normal to know that I'm not the only one in the world to be depressed at times.

I do hope that everything will turn out better for you. Love Sue

dorcas

HI SS... good to see you posting again

I think (guessing) that when they say disease 'remission' whilst on anti-tnf it means that the drug is working and that the disease process (the tnf) is under control.

Maybe someone with proper knowledge will come along SS and explain it better.... or you could post your question on the helpline forum:idea:

hope the increase in pain meds helps you meantime.

(((hugs)))

Iris x

shiningstar

Hi All

Thanks everyone for your advice...have tried to be positive all day but just feel rubbish...feel like im coming down with the flu or something...god I hope not.

SS

barbara12

Hi SS
Sorry I cant help with the questions, I just want to say, next time you feel down, dont go away...stay and talk to us, its good to get it off your chest.
I really hope things improve for you very soon
Lots of hugs ((((((())))) and love
Barbara x

tillytop

Hi SS, sorry you are feeling so down at the moment but, as you can see from the replies to your post you are not alone and we do understand.

There is no doubt that trying to find the right combination of meds is a real roller-coaster ride and I can understand your disappointment and frustration that the meds you are taking are not working well for you. But please don't despair - there are many other drugs out there to try and these things do take time.

As the others have said, these disease modifying drugs are intended to slow down the development of the disease and are often taken in combination. I have been on several at one time in the past. And painkillers and anti-inflammatories can be added in or taken out as needed. In terms of remission, it normally means that your RA is well controlled on the drugs, so pain, stiffness and inflammation levels are significantly reduced. Unfortunately, with RA, you need to keep taking the drugs to maintain that remission.

Hopefully, if you have now been taking the Sulfa for 3 months, you will be due for a rheumatology follow up appointment soon? Because it does sound as if you need to be talking to the doc about alternatives if you are not seeing any benefit from the meds you are taking.

Hope you are not going down with flu on top of everythiing else SS -In my experience often flu-like symptoms go with uncontrolled RA, so it could just be another indicator that the drugs are not working for you.

Sorry if I have rambled on too much! But please do keep posting - we are here to listen and will support you in any way we can.

Thinking of you.

Love Tilly x

shiningstar

Thank you guys all your help,advice and kind words really appreciated. Have got into bed now plenty of pain killers heat pad on neck cup of tea and tv on .... Lying here I kind of don't feel too bad ... Fingers crossed I feel ok in the morning.
Sleep tight everyone SS

barbara12

shiningstar wrote:

Thank you guys all your help,advice and kind words really appreciated. Have got into bed now plenty of pain killers heat pad on neck cup of tea and tv on .... Lying here I kind of don't feel too bad ... Fingers crossed I feel ok in the morning.
Sleep tight everyone SS

Hope you sleep well SS....night night
Barbara xx

shiningstar

Hi everyone
Think it's a virus ache all over , not joints, fuzzy sore head and bloated sore tum , can't eat feel a bit sick and not hungry.... Have to go to work soon only part time though so only 10-2.30 today then home and straight to bed...
Hope u are all ok today
Love SS

dreamdaisy

You don't sound right at all SS - have you checked your temperature? Can you get to a doctor today? DD

shiningstar

Hi DD
Don't think I have temperature by feeling quite queasy ... Can't wait to get home and get into bed... Typical as it's bank holiday and supposed to have peeps over tomorrow ... Thinks that's out of the window couldn't face it ...
Hope your ok you always seem to be there no matter how you feel yourself .,.don't think you ever complain .. Need to take a leaf out of your nook Love SS

shiningstar

Oops ... Meant book xx

ironic

Hi SS,
Hope you are tucked up in bed. Sorry that you had to go to work. I work 4 days part time but I am beginning to stuggle with it.
Rest is the best thing you can do right now but I know that is not easy to do.
Have a relaxing weekend.


Lv, Ix

dorcas

Hi SS from me too.

hope today wasn't too much of a struggle and that you feel better with resting over the weekend.

will be thinking about you and looking for an update when you feel you can.

Iris x

shiningstar

Hi All
Deteriorated all afternoon yesterday so called gp who came out to see me...have kidney infection and fever on antibiotics but feeling rough..
Hope you are all ok SS xx :oops:

dorcas

Oh SS... so sorry things have not gotten any better for you... in fact by the sound of it... worse. :roll: :?

you did the right thing though getting the GP out, so hopefully you'll begin to feel the benefit of the meds.... kidney infections are notoriously painful and do knock the stuffing out of you, so take it easy and rest.

hope you've got someone on hand to help out. :?:

stay warm and drink plenty... hear from you soon (when you're up to it).

(((hugs)))

Iris x