Advice for Wednesday please

sulkycat

Me again.

I am at hospital on Wednesday, to see the RA nurse but with access through them on the day to my consultant. I have RA and OA in most joints.

I have tried meths tablets, injections, hydroxychloroquine, sulfasalazine. All bad reactions in varying degrees.
Steroids didn't do anything except make me bloat up like a flippin' balloon!

Pain killer wise, have tried codeine variations, anti inflammatories, diclofenac, amitrip, all sorts. Am currently on Tramadol and paras, nothing else for the pain or for the disease.

Since stopping the MTX and sulfa the pain has built up - I assume that despite the side effects they were doing something to dampen down the pain a bit.
Today my left hand in particular is terrible, worst it's been - swollen, red marks on knuckles, shocking pain. My knees are bad, my neck, ankles.

What can I do to make them realise exactly how much pain I am in? Is there anything specific I can ask for or suggest? They are excellent staff and very approachable. I am pretty down in the dumps with the pain and continuing to-ing and fro-ing, even though I know it's a matter of trial and error.

Thanks in advance.

tjt6768

sorry to hear that things are so bad sulky.. Only thing I can suggest is be honest with them..
Write everything down, do a pain map etc..
I wish you the very best of luck with your appointment. I'll tag along for pocket duties as long as someone reminds me nearer the time.

dorcas

Hi sulkycat

It's so difficult to get the right balance of meds, especially when you are sensitive and react to many of them. :roll: but it sounds as though you are really suffering...and need your rheummys to consider what's next in the battle against arther.

None of us can recommend meds ... only speak of our own experience in the hope it helps. You've not mentioned whether your rheummy has considered / discussed with you anti- tnf or biologic therapy?

Many of us here on the forum are on one or tother of these drugs following unresponsive outcomes on DMARDS ...such as you've mentioned above. It might be worth you discussing whether anti-tnf/ biologic therapy might be an option for you? I've posted this link which I hope might be helpful:
http://www.healthtalkonline.org/disability/Rheumatoid_Arthritis/Topic/2219/

Other than that I'd suggest you take note of the joints that are currently affected by arthritis, whether there's swelling/ redness... and the level of pain you're experiencing ; other aspects such as whether your sleep is being disturbed by painful joints can help your rheummy in assessing your condition/ making comparison with previous notes he's made. I've found that even making a List (of the above symptoms) helps focus the mind prior to appointments!

It's good to read that you have a helpful rheummy team ... so it should make it easier to tell them how tough you're finding living with arther .

Good luck for Wednesday!

Iris xx

CJHunter

Hi Sulkycat, I feel for you I realy do. All i can say is I Dorcas has given you some sound advice there I would seriously look into that and be honest.

Good luck for wed. Are you asking us to come along for Pocket Duties??

If you are count me in, i will bring summat to warm our cockles.xx

Colin1

Hi Sulky its a long road we tread, i went through all the same problems, its not for me to recomend a med but i would enquire about the anti TNF drugs, i hope it all goes well best let us know how you get on. Its difficult when your in so much pain, I know hospital staff are good but i dont think they realise how difficult it is to cope with long term pain such as you have.
Take care
Colin

frogmorton

Hi Sulky

my only advice is to write your list....

location of pain and level out of 10 and then how long stiffness for , how it affects you (what you can't do/lack of sleep etc).

and don't go alone....if at all possible.

Helps you remember everything said and they can support you by saying how bad things are.

Good luck to you..will be thinking of you on Wednesday

Love

Toni xxx

sulkycat

Thank you all.

My hands are agony, had my bloods done this morning and my nurse commented on how bad they looked.
Will see what they say tomorrow.

Would cross my fingers if I could!

tjt6768

hi Sulky.. I'm sure a few of us will tag along with you for support.
I really hope you have a decent appointment tomorrow and they get you sorted out soon best wishes mi dear..
Please let us know how you get on...
Don't forget to write things down, hand it to them and ask them to read through it as when you try and remember everything it's easy to forget things..

dreamdaisy

Hello sulkycat, I hope today goes well for you and that someone can suggest something that will actually HELP - now that's a novel idea, isn't it? I am thinking of you and please let us know how it goes. Take care. DD

dibdab

Hi Sulkycat,

Hope all goes coming in your pocket for moral support.
Deb

valval

well am in pocket with you just incase you need suport val

barbara12

Hi
just to add my support for today,and I do hope you have a good appointment, and help of course.
You take care xx

frogmorton

I am right here with you Sulky

my fingers (Lb of pork sausages they may be ) are firmly corssed for you.

Love

Toni xx

sulkycat

Thanks all - hope it wasn't too dusty in that pocket!

They were very good at hospital, I wasn't rushed and was able to have a proper discussion (even though it was absolutely chocablock).

Because there isn't much left I can try they have started me on Leflunomide, very slow low dosage (one alternate days for a month before trying one a day). Also possibility of Gold injections.

They think the ME is a factor in me not being able to handle the other drugs and to the pain being so severe - they are concerned that if I start biologics I will be ill again with the accompanying DMARD.

I asked if I had been a bit of a wuss and not given the Sulfa a proper chance but she adamant that a reaction that strong shouldn't be messed with (so that was a bit of a relief).
So here we go again - will see how things go. Would be interested in anyone else's experiences with Leflunomide.

Thank you for caring xx

dreamdaisy

Well, that sounds a good appointment, at least you weren't rushed and had time with them to go over everything. It makes life harder if there are meds that you are denied for other reasons, I had a leflunomide a few years ago and there are some on here for whom it is working well, so let's hope you are included in that number, yes? I wish you well with it and I sincerely hope it helps. Now it's time for a cuppa and a good rest, yes? DD

tjt6768

That sounds like a very positive appointment. I'm really pleased that they took time to listen.
Hope the new meds help, I've not had them so can't help on that score.

Best of luck though

CJHunter

Glad your appointment was positive and not rushed.
Hope you get on ok with these ones and at least you know you were right to come off the sulpha.

All the best.

frogmorton

Hi there

l bet you feel better now that's done and dusted

I think you did well there and am so glad they took their time and listened to you. l haven't tried leflunomide, myself, but a lass at the swimming pool l go to swears by it.

I like the idea of building up very slowly. Gives you a fighting chance l think.

Love

Toni xxx