Advice for Wednesday please
sulkycat
Member Posts: 71
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.
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.
0
Comments
-
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.
Me-Tony
Ra-1996 -2013 RIP...
Cleo - 1996 to 2011. RIP0 -
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 xx0 -
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.xxClare xx0 -
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
ColinWHEN GOD GIVES YOU LEMONS MAKE LEMONADE0 -
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 xxx0 -
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!0 -
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..
Me-Tony
Ra-1996 -2013 RIP...
Cleo - 1996 to 2011. RIP0 -
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. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
-
Hi Sulkycat,
Hope all goes coming in your pocket for moral support.
Deb0 -
well am in pocket with you just incase you need suport valval0
-
Hi
just to add my support for today,and I do hope you have a good appointment, and help of course.
You take care xxLove
Barbara0 -
I am right here with you Sulky
my fingers (Lb of pork sausages they may be ) are firmly corssed for you.
Love
Toni xx0 -
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 xx0 -
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? DDHave you got the despatches? No, I always walk like this. Eddie Braben0
-
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 thoughMe-Tony
Ra-1996 -2013 RIP...
Cleo - 1996 to 2011. RIP0 -
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.Clare xx0 -
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 xxx0
Categories
- All Categories
- 21 Welcome
- 18 How to use your online community
- 3 Help, Guidelines and Get in Touch
- 11.7K Our Community
- 9.3K Living with arthritis
- 139 Hints and Tips
- 219 Work and financial support
- 750 Chat to our Helpline Team
- 6 Want to Get Involved?
- 393 Young people's community
- 11 Parents of Children with Arthritis
- 38 My Triumphs
- 122 Let's Move
- 29 Sports and Hobbies
- 19 Food and Diet
- 357 Chit chat
- 242 Coronavirus (COVID-19)
- 30 Community Feedback and ideas