What a waste of 5years

issyknight

Hi all got a moan. For the last 5 years I have followed my rheumys advice only to get a new rheumy who has changed everything. I have been informed that they are now going to treat the RA (I thought that was what they were doing) No they have been managing the pain. I have been told the reason I keep getting flares is due to always being on the cusp of a flare. She wants me to have steroid injections as soon as I feel a flsre brgining,rather than tablets not in the real world in Bromley there is no where you can go to get steroid injection without appointment, my flare would be over by the time I saw my doc.
I have now added a new medication to go along with my metrx Sulazine which at the moment is giving me bad side effects hopefully it will settle. Thay also going to arrange for me to have mtrx injected so I dont lose dosage. At the moment I have severe lower back pain,nausea and no energy feel ***p. Any ideas how to get round this feeling will be helpful.

Issy (moany and misserable).

nearlybionic

Hi Issy
Sorry you feel you have been messed about. I hope your new rheumy is able to manage things better for you. If they want you to ahve a steroid injection when a flare starts can you contact the Rheumy clinic for a quick appointment ?
Take care xx
NB

issyknight

Only if I get flare on a Wednesday it is just so stupid. My other half said flares are so unpredictable you dont know when they gonna start.

tkachev

Hi Issy,

That is a worrying post. Does that mean your treatment will now improve and you will start to feel better? Being on a cusp of a flare for so long is awful, no wonder you feel so let down.

Let us hope the new rheummy will be a good thing for you.....

Elizabeth

tillytop

Hi Issy and welcome to the forum!

So sorry you have been struggling with the RA for 5 years without proper help by the sound of it.

Is it Sulphasalazine you have just started taking and which is giving you bad side effects? If so, thought it might help you to know that I had horrible headaches and nausea when I started taking Sulpha but I stuck with it and I did get used to it after a while and took it for many years after that with no probs at all.

Hopefully, if your RA gets under better control, you won’t be in the situation of always being “on the cusp of a flare” so hopefully urgent steroid injections will be few and far between for you.

Not sure about the back pain, but the nausea and no energy could be either the meds, or the RA itself and hopefully, once you settle down with the new meds you will start to feel better. I know it’s hard when the meds and or the RA make you feel rubbish but you’re not yet seeing any benefit – I ‘m kind of in that position myself at the moment (waiting for methotrexate to do its stuff) so I do understand a little of what you are going through.

Glad you have found the forum though, cos you will get lots of support on here from others who really understand – and for lighthearted company, do join in on the “chit-chat” forum if you want to.

Hang in there Issy – you aren’t on your own with this.

Thinking of you.

Love Tilly xxx

issyknight

Thanks Tilly that is the idea lets start treating the Ra so I pray things settle down. Only on first week with sulazine so will try and stick with it. Just feels last 5 years treatment was a waste of time. You put your faith in these people only to see disapear. Will just have to try and get through this bad patch.

Issy

issyknight

Thats the idea Elizabeth but it feels like I'm starting all over again.
Issy

fretboard

issyknight wrote:

Hi all got a moan. For the last 5 years I have followed my rheumys advice only to get a new rheumy who has changed everything. I have been informed that they are now going to treat the RA (I thought that was what they were doing) No they have been managing the pain. I have been told the reason I keep getting flares is due to always being on the cusp of a flare. She wants me to have steroid injections as soon as I feel a flsre brgining,rather than tablets not in the real world in Bromley there is no where you can go to get steroid injection without appointment, my flare would be over by the time I saw my doc.
I have now added a new medication to go along with my metrx Sulazine which at the moment is giving me bad side effects hopefully it will settle. Thay also going to arrange for me to have mtrx injected so I dont lose dosage. At the moment I have severe lower back pain,nausea and no energy feel ***p. Any ideas how to get round this feeling will be helpful.

Issy (moany and misserable).

Sorry to hear that Issy, I am in exactly the same position and off work again. I inject Mtrx and find it reduces sickness as it does not go directly into the stomach. I have found that the steroid tablets are best for me. Spoke to my GP last week and he was a great help. Like yourself I get frustrated and give myself a hard time, spoke to a friend who has beem through a lot as well and told him how I was feeling. Think of it as a ski jump you need to get to the bottom before you experience the thrill of the jump! Cheesy I know but it worked !

carola

Issy

I know you must be feeling a bit in shock at thinking that 5 years have been wasted however once you start feeling a bit more positive you will see that at least you won't now be spending a FURTHER 5 years on the same old meds.

Regarding your Rheumy saying that you should have an injection when you feel the onset of a flare. What did the Rheumy say was the solution to actually ARRANGING AND GETTING the injection quickly? Can you call up the Rheumy Nurse and arrange to go in for injection that same day or next day? Or can arrangements be made that your GP of GP Nurse inject you that same day or next day? There must be a solution to this or else the Rheumy was giving pointless advice. Call the Rheumy department for an answer.

You are feeling really ill just now therefore try to relax and be kind to yourself and when you are feeling a wee bit stronger address the above and welcome the new meds and approach with open arms.
Good luck, Carol

frogmorton

Hi Issy

You on sulfa now too? I hope it helps you and you stop feeling so poorly very very soon. New meds can take some getting used to can't they??

I do hope things DO start to come together for you soon.

Love and hugs

Toni xx

issyknight

Carol Rheumy plan is to set up full time norse at hospital nut until that is sorted go to G.P. but only 2 docs at surgery do it and cant get appointment. Will have a telephone app with one of docs on Friday to see if anything can be done. Rheumy is worried that no one is monitering how much steroids I'm using and worried by the side effects. I just do what they tell me at first sign of flare take 5 tabs for a week then reduce over next couple of weeks. I know its not the correct way but it did work. They only have a nurse on a Wednesday at the moment

Issy

issyknight

dont they just Toni.


You on sulfa now too? I hope it helps you and you stop feeling so poorly very very soon. New meds can take some getting used to can't they??

I do hope things DO start to come together for you soon.

Love and hugs

Toni xx[/quote]

carola

Hey Issy

I sounds like the resources will be there at some point in the future then but not right now?

I know it is the last thing you feel like doing when you are feeling like cr&p just now but when you speak with the Doc try really hard to tell him/her that we need to find a solution to this NOW! It takes 5 mins to squeeze you in when you need the injection and after all, this is the advice from the Rheumy.

I have lost count of the times when I have call my GP centre asking for something only to be told it is not possible and then when I press them on it hey ho presto I get what I need.

Keep asking and you will get a solution meantime look after yourself and relax.
Carol

tillytop

Hi Issy

Do give the Sulpha time - hopefully things will settle for you. I do sympathise - my RA was not really properly treated for the first couple of years - was only when I moved house and went to a new rheumy that things moved forward for me.

Have you been on the meth for a while now? What dose are you taking?

Thinking of you.

Love Tilly xxx

issyknight

been on meth for 5years was on 10 tried to increase but side effects were horrendous that why they going to try injection route.
Will try with sulpha.
Issy

tillytop wrote:

Hi Issy

tillytop

Hi Issy

Hope the injected meth works better for you and that you see some benefit from it, together with the sulpha.

Thinking of you and hoping you feel better soon.

Love Tilly xxx

barbara12

Hi Issy
I am so sorry you have had to go through all this,like you say ,you put your trust in these people and they let you down
Hopefully the new meds will start to work for you,and the horrible flares will settle down
Lots of love
Barbara xx

issyknight

barbara12 wrote:

Hi Issy
I am so sorry you have had to go through all this,like you say ,you put your trust in these people and they let you down
Hopefully the new meds will start to work for you,and the horrible flares will settle down
Lots of love
Barbara xx

Thanks Barbara just feel so defeated but will get through just cant see light at moment but know its there.

Issy

tillytop

Hi again Issy

I know how hard it is but hang on in there! Please do keep posting - we will support and encourage you as best we can.

Thinking of you.

Love Tilly xxx

clairc

You're not alone Issy. I have been ill for 20 years and just 3 weeks ago I was finally diagnosed with Palindromic Rheumatism. I feel like I have wasted half my life being ill and I kick myself for not pushing harder to get a diagnosis and treatment. I'm very angry and sad but regretting the past isn't going to help me, I need focus on the future, find the right treatment and get on with my life.

I hope things settle down for you soon (((hugs)))

Clair

carola

Thanks Barbara just feel so defeated but will get through just cant see light at moment but know its there.

Issy[/quote]


'Atta Girl Issy You know that you'll get there, just remember to relax, not overdo it and look after yourself whilst you are getting there

Carol

skezier

Hi Issy,

Sorry to see your post but they seem to all have their own ideas. Hopefully the tablets a the mtx will stop the flares and bring it under control.

You mustn't think that the last 5 years have been waisted flower, its just too hard to deal with that way. Leaving you a ((( ))) and a hope that it will all start to hep you now. Cris x

woodbon

Hi, I'm sorry you've had such a rotten time of it. Its hard to know what to say. I would think that the new rheummy is more up-to-date with the treatment, sometimes older doctors get stuck in their ways and don;t believe in the newer treatments. Its a headache for you though, sorting it all out, so I hope all goes well for you.

I'm glad you've come to the forum, so welcome!!! Lots of love Sue xxx

issyknight

Seen doc yesterday and got steroid injection which seems to be doing the trick. Got through first week of new meds adding an extra tablet Monday so hopefully side effects will settle. I was lucky with metrx as only had nausea the sulazine has been horrendous. Doctor has signed me off for 2weeks to give my body a chance to get to grips with flare and side effects.

Thanks for all your support it has helped me get through this week.

Issy

tillytop

Hi Issy

Glad you are getting some help from the steroid injection and hopefully the 2 weeks signed off will make things easier whilst you get used to the sulpha. Hopefully you will get used to it once you get up to full dose - as I say I nearly gave up but I did get used to it and it was fine after that so hopefully you can hang in there to give it a chance to work.

Good luck with the increase tomorrow - will be thinking of you. (I am supposed to be upping my mtx dose tomorrow so you will be in good company!)

Love Tilly xxx

tillytop

Hi Issy

Just to say "good luck" with your extra sulpha tablet today.

Thinking of you.

Love Tilly xxx