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Rank: Advanced Member  Groups: Registered
Joined: 12/16/2009 Posts: 156
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I have been on Sulphsalavine for 4 weeks now and I am on what the rummy Nurse said would be the full dose, but from about a week ago I have had lots of pains in my hands and when i rang the nurse she though it may be a flair up but the pain is not going away and the swelling is there as well, also I know RA gives you lots of fatigue but all I seam to want to do is sleep.
did any one else have these sytoms when they first went on sulp or is it just me, I have also develped a cough but not sure if it is one that is going around or todo with the sulph.going for a blood test in an 1hr or so, but i am still confused as to how this RA is going to work out.
not sure what the rest of you feel like with it but if I am satdown I am ok but can not walk far because of the pain in my feet and Knees, any ideas anyone ?
well thanks for listening to me hope you are all feeling good with yourselfs
Talk soon
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi
If you have any sort of infection- your RA will play up. It is because RA is an immune system disease.
Your immune system is in overdrive because of the RA (like a guard dog attacking its owner) you get an infection, your body is attack mode anyway and then goes into mega overdrive and so the swelling and pain goes up.
You are on sulphazalazine and it is too early for it to have worked on you yet.
you need to be checked at the GP for any sort of infection as the Sulp. will damped down your reactions somewhat (ie lack of temperature) but with an infection you need to see the dr, explain you are on immuno surpressants and you should be seen as a priority.
we all started somewhere along the line, we all KNOW what it is like.
Once that RA is controlled you will feel so much better and the walking problems with the fatigue is something that will be addressed with better controlled disease.
It might be that the rheumatologist decides to add in another medication like MTX.
Are you on pain killers and anti- inflammatories? You should be! Speak to the GP for some advice. I would ask for some to just take day to day (co-codamol) and then some big guns for when you have a flair up- stronger co- dydramol or even a morphine based one.
If you can manage to get in and out take a bath, go for bed rest for a couple of days if you are able- just do the gentle full rotation exercises.
Much love, rest up
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Audrey
I'm sorry you're still feeling poorly, but it's early days yet, and I'm sure with time things will improve. Jenni has given you some sound advice, so I hope you're able to take it. and hopefully feel better.
Lyn
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Rank: Advanced Member Groups: Registered
Joined: 12/16/2009 Posts: 156
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Hi Jenni
Thanks for the advice I will take the rest etc and yes i am on tramadol for the pain and take amatriptolen at night I will make an appoinment at the GP but every other time i have gone to the GP she always says you are under the Hospital contact them for advice which in its self makes me mad.
I would just like to say thanks for the advice because you are all wonderful and reading your writing and answers to mine and other peoples problems does help us all a big thank you to you all. and take care
Audrey
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Audrey, I hope you`ve managed to get an appointment with your GP, and got some help. It`s all very well saying you are under the hospital, contact them, but very often the GP is your first port of call, and he/she does, after all, have the full picture of you and your health. The sulphasalazine does take a while to get into your system, up to 12 weeks, so don`t despair yet. Were you not offered a steroid injection to tide you over until the sulf kicks in? If not, it may be worth ringing your rheumy nurse and asking about one. I know I was given one at the start of my treatment when I was first diagnosed, and started on sulf. Hope you begin to feel better soon, Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 327
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Hi Audrey
So sorry you're in so much pain at the moment.
I started on Sulpha about five years ago and it did take a good three months for it to kick in. Once it did it was a great help for several years but eventually wasn't so effective so I now take MTX as well. So the answer to your question really is - give it another couple of months before you decide the sulpha isn't working.
However, your gp doesn't seem very sympathetic. Mind has emphasised that if I have problems between rheumy appointments I should go to the surgery, not wait for my next appointment with the rheumatologist.
If they haven't got back to you yet then your blood test is probably okay, but I would mention to the gp about the cough, just in case.
As for the tiredness, when I first had RA I used to get up, get washed and dressed and then be so exhausted I'd collapse on the bed and sleep for a couple of hours - and that was after 12 hours sleep at nights. Thankfully that did ease off, but sometimes, during the day, I'm suddenly overwhelmed with exhaustion and have to go and have a nap. It feels such an "old lady" thing to do and I hate it, but sometimes it's the only way to get through the rest of the day.
Let us know how you get on with your gp, won't you?
Anthea x
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Rank: Advanced Member
Groups: Registered
Joined: 1/23/2010
Posts: 100
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Hi Audrey,
I have exactly the same problem as you at the moment. I've been on sulfasalazine since 10th Feb and I've had really bad pain in my wrist, hands fingers and knee. All on my right side. I'm still taking 1 steroid a day along with naproxen but there doesn't seem to be any improvement. I'm back at work now and am shattered when I get home. I hope your problem sorts itself out once the tabs kick in just as I hope mine does too.
The nurse told me it takes up to 12 weeks. Hey ho!! life goes on
Let us know when that happens and I'll keep you updated on mine. lol
xx Chris xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Audrey
Sorry to hear you are in so much pain.
I can't add to the excellent advice you have already been given, but just want to send a cyber hug and say I hope you soon feel much better.
Love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi Audrey,
I have also been on SLZ for a while now and they do, like all the DMARDs take up to 3mths to really work.
An option is to ask for a large depo to calm the inflammation down and allow the SLZ to kick in quicker.
I am sorry you're in so much pain, I so hope it is relieved very soon.
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hi Audrey,
I'm echoing all the words of good advice already written but just to add - I'm on sulphasalazine too and it did take time for me,
You must never feel guilty about having a rest, this is what your body is telling you is needed, aim to pace yourself through the day and remember, what's not done, not done.....and never mind, - i know its much easier said than done... but its the way we need to be xx
Hope you've got some good support systems in place, i used to leave leaflets around for my hubby, ......just strategically placed...... it is such a difficult condition for others to truly comprehend especially at first - and i remember going thorugh so many emotions - its enough to make you feel exhausted,
I had a lot of sore throats and also a sore mouth and tongue at first - it is a strong drug to take and I didnt want to take it at first BUT I'm glad i did, as it has worked well for me in the long run. When im run down it always seems to be my throat that plays up first.... I'm still not sure if this is the meds or the RA.....
Like others have said with regular review there are possibility of additions to meds if needed,
i am now able to cut down from max SLZ dose (very, very slowly) at times and now feel much more in control of things nowadays,
I really hope things progress well for you and you are able to get some relief,
Please stay in touch and let us know how you are xxxxx
Take care, Love Liz xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi Audrey I've had RA for 3 yrs- it was amost about a year before i was diagnosed and I remember Xmas 2007 I hit rock bottom with the pain and not being able to move much. I'm also on sulf-it took about a month to start seeing any difference and 3 months before any noticeable improvements. It's annoying that it takes so long but once it kicked in I started to get my life back - I was so much better. It was a gradual improvement but apart from stiff knees which I ve learned to live with I was almost back to normal- well as normal as you can be with RA! The rheumy gave me a steroid jab til the sulf started working. Take heart- it does get better- it might not seem like it at the moment.I remember many tearful times when I thought my life was over- but bit by bit was able to do most things again. I felt so good everytime there was a little improvement, which really gives you a boost psychologically. I'm very impatient but have had to learn to slow down which isn't a bad thing really. Taking things a bit at a time has been hard  . I'm also very independent so it was hard to accept or ask for help. I still can't get the hang of pacing myself and when I feel good I just carry on at my usual pace and pay for it the next day. I still get the occasional flares but usually quite mild and I get over them quickly. I always used to think that once the meds kicked in that would be the end of the pain and stiffness- I guess I was expecting a miracle cure! I'm still working ,too, 4 days a week, although being a teacher isn't the best job to have with RA! Fatigue was a problem for a while- goes with RA. It might be that you are slightly anaemic due to RA. I spoke to my gp about it. He sent me for blood tests which showed that my folic acid levels were low so he put me on a supplement which has really helped. I was also on diclofenac and paracetamol but was gradually weaned off them til I only needed them occasionally. I have tramodol if I need anything stronger. I've had 2 good years on it, but unfortunately it's now less effective so I'm having to go onto methotrexate- that's the way it goes for some people. Being newly diagnosed is a difficult and confusing time . There's so much help and advice here on the forum and you can be sure that whatever your concerns, there's always someone who can help or just add a bit of tlc when we need it. Sorry to rabbit on so much  I hope things settle down for you. please try to rest and look after yourself. Love Maria x
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Rank: Advanced Member Groups: Registered
Joined: 12/16/2009 Posts: 156
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Hi Everyone
thanks for all your info went to Dr and while I sat in her room and she rang the hospital for advice on what she had got to give me she said I have a chest infection so she has given me some antibiotics so lets hope they work the blood tests had not come back so the nurse is going to ring me monday if there is a problem. the cough is attached to the chest infection she hopes but if it is still there when my anti biotics have run out I have got to let the rummy nurse know and we are going to work from there.
the rummy nurse is watching me very closly because I was on MTX and it caused me to have a Liver problem so that is out she says.
I am feeling a little better to day still lots of Pain but i am learning to live with this I do hope as you are all telling me it will be a bit better.
my husband is very good to me he makes sure i am fed etc he is not happy about house work but i try and do some and then rest and keep doing it in stages, but he is still not sure how to deal with it he says his life has been turned upside down as well and some of his needs i can not meet but i keep saying it will get better,
I will keep you all posted on how I get on and how I feel
Thanks for your help everyone hope you feel great
Take care
Audrey.
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi Audrey
good to hear that they are all working to help you- let's hope it is a chest infecton and nothing else.
My hubby still isn't able to deal with me having RA- he will get dinner and do some housework but otherwise not much else- like today i was off work all day due to a bad flare- he as home at 2 but left me upstairs on my own didn't even see if i wanted a drink- hadn't had a cupa sice breakfast time. Ah well......
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Rank: Advanced Member Groups: Registered
Joined: 12/16/2009 Posts: 156
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Hi Maria hope you feel a little better today thanks for your post it helps to know you are not alone on these things. just to let everyone know I have only 2 more Antibiotics to take but the cough and the chest is no better nor is the pain spoke to the rummy Nurse this morning going to give me an other couple of days and if the weasing on my chest gets any worse we will have to review the Sulph tablets.  will keep you in touch with what happens.  hope you all well  Audrey
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Sorry to hear that things aren't improving Audrey. I know sulpha can be extremely effective for some people but it didn't suit me at all. It could just be a stubborn infection but glad the rheummy nurse is listening to you. Please get in touch with them if your don't feel any better.
Julie
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