Hi, Newbie

silverfoxxxx

Hi,

I've had ongoing back and left knee problems since I was 18, had several years of steroids with varying degrees of success, now at the age of 40, 'sero negative arthritis' was on my last hospital letter, after having the worst flare up forcing me to push for answers. Currently both knees, lower back and even sore hands out of nowhere.


Absolutely messed with general life, work life and mentally challenging, last year I was running 5k 3 times a week, fit for life and extremely happy, this year I struggle to walk to the bathroom in the morning without a good set of stretches, amazing how mentally that has been crippling me, more so than the pain.

Was prescribed Sulfasalazine 4 weeks ago and have been working up in dosage, seemed to be going ok, had stomach issues to start but those settled, swelling in knees seemed better controlled but not gone by any means. Then in the 4th week and at my full target dosage it just all went wrong, kidney pains, stomach upset, back spasmed and could hardly walk / move around, something I can only explain as night terrors started and after waking in a cold sweat over the weekend thinking I had literally slit my wrists in the bath I cried uncontrollably for a few hours and decided the tablets may not be working as I'd hoped....

Back to square one it seems, and to top it off the Rhuemy dept is closed until 5th September due to shortages and the bank holiday!!!!


I honestly have never felt so low, I came across this forum and have been reading some great stories of people managing their arthritis and hope I can get to this stage in the not to distant future.

[Deleted User]

Hello Silverfoxxxx and welcome to the forum from myself and the Moderating Team. Any problems you have using the forums please do not hesitate to contact us via personal message.

Having read your post I am most concerned about the symptoms you are displaying. Night terrors are not known to be common side-effects of sulfasalazine:

https://bnf.nice.org.uk/drug/sulfasalazine.html

I would advise you taking some medical advice if you haven’t already. I see your Rheumatology Dept is closed until the 5th September. If you do not have a telephone number to contact the Department for advice, you can try your own GP, pharmacist or even a quick call to 111.

Hopefully you have already taken advice and if you have and all is under control now. It’s understandable that you are feeling very low feeling ‘back to square one’.

You have definitely come to the right place to get support with your arthritis this community is very knowledgeable and will help in any way they can.

I look forward to seeing you post in future.

Best wishes

Ellen

silverfoxxxx

Hi,

Thanks, managed to get to see my gp today who made contact with a rheumatologist, was told it is a possible side effect and to not take it again, I have an appointment the beginning of October and will be reassessed and look at alternatives.

stickywicket

What a lot to contend with! No wonder you're feeling so low. Just as you thought you were getting somewhere too.

Just because you had got to the full dose of sulf doesn't mean to say it was now working at it's best. It sounds as if it was starting to but they usually reckon up to 12 weeks before things really improve.

I don't think nightmares are a recognised side-effect of sulf. I wonder if you are also taking pain relief as night terrors can occur with opioids.

If you are having your blood tests as prescribed, any potential kidney problem would be picked up immediately. (To be honest, I don't know what kidney pain would feel like.)

The closed department is, sadly, all too common. Like Mod Ellen, I think your best bet might be to ask your GP's advice. He / she might have access to your blood reports and so know if the sulf was causing anything untoward.

This is a rubbish disease and it does, at times, wreak havoc with our lives. But, if you have an inflammatory form of arthritis, you really do need a DMARD such as sulf so I hope this aspect can be resolved asap.

You know, we all manage brilliantly at times and hopelessly at other times. You'll battle back. Things will improve. You just need to get stabilised, if not on sulf then on some other DMARD. Meanwhile, we do understand on here so feel free to tell it like it is. We're listening.

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. It's good that you have seen a doctor, sulph can do odd things to people especially if they mix it with OTC products such as indigestion tablets or herbal remedies. We have to be very careful with such things.

I am 22 years in, I began back in 1997 when I was 37 but wasn't accurately diagnosed until 2006 when my skin helpfully obliged with a bout of pustular psoriasis on my palms and soles, suddenly I had psoriatic arthritis (PsA) but the label changed nothing in terms of treatment. OA was diagnosed in 2011 so life has its moments. I stopped taking sulph some time ago as it was doing nothing, whereas a friend of mine with PsA is beautifully controlled on six tablets per day and has been for years. C'est la vie. DD

turtle

silverfoxxxx wrote:

Hi,

I've had ongoing back and left knee problems since I was 18, had several years of steroids with varying degrees of success, now at the age of 40, 'sero negative arthritis' was on my last hospital letter, after having the worst flare up forcing me to push for answers. Currently both knees, lower back and even sore hands out of nowhere.


Absolutely messed with general life, work life and mentally challenging, last year I was running 5k 3 times a week, fit for life and extremely happy, this year I struggle to walk to the bathroom in the morning without a good set of stretches, amazing how mentally that has been crippling me, more so than the pain.

Was prescribed Sulfasalazine 4 weeks ago and have been working up in dosage, seemed to be going ok, had stomach issues to start but those settled, swelling in knees seemed better controlled but not gone by any means. Then in the 4th week and at my full target dosage it just all went wrong, kidney pains, stomach upset, back spasmed and could hardly walk / move around, something I can only explain as night terrors started and after waking in a cold sweat over the weekend thinking I had literally slit my wrists in the bath I cried uncontrollably for a few hours and decided the tablets may not be working as I'd hoped....

Back to square one it seems, and to top it off the Rhuemy dept is closed until 5th September due to shortages and the bank holiday!!!!


I honestly have never felt so low, I came across this forum and have been reading some great stories of people managing their arthritis and hope I can get to this stage in the not to distant future.

Silverfox, I found it most interesting that you found the mental/emotional pain worse than the physical. I have had periods of not being able to walk (shattered sacrum and pelvis, crushed vertebrae), and I know how it feels to be immobilized by pain.

I am sorry you have suffered so much. This illness takes so much away from us. I will be thinking of you and everyone else here.

silverfoxxxx

turtle wrote:

silverfoxxxx wrote:

Hi,

I've had ongoing back and left knee problems since I was 18, had several years of steroids with varying degrees of success, now at the age of 40, 'sero negative arthritis' was on my last hospital letter, after having the worst flare up forcing me to push for answers. Currently both knees, lower back and even sore hands out of nowhere.


Absolutely messed with general life, work life and mentally challenging, last year I was running 5k 3 times a week, fit for life and extremely happy, this year I struggle to walk to the bathroom in the morning without a good set of stretches, amazing how mentally that has been crippling me, more so than the pain.

Was prescribed Sulfasalazine 4 weeks ago and have been working up in dosage, seemed to be going ok, had stomach issues to start but those settled, swelling in knees seemed better controlled but not gone by any means. Then in the 4th week and at my full target dosage it just all went wrong, kidney pains, stomach upset, back spasmed and could hardly walk / move around, something I can only explain as night terrors started and after waking in a cold sweat over the weekend thinking I had literally slit my wrists in the bath I cried uncontrollably for a few hours and decided the tablets may not be working as I'd hoped....

Back to square one it seems, and to top it off the Rhuemy dept is closed until 5th September due to shortages and the bank holiday!!!!


I honestly have never felt so low, I came across this forum and have been reading some great stories of people managing their arthritis and hope I can get to this stage in the not to distant future.

Silverfox, I found it most interesting that you found the mental/emotional pain worse than the physical. I have had periods of not being able to walk (shattered sacrum and pelvis, crushed vertebrae), and I know how it feels to be immobilized by pain.

I am sorry you have suffered so much. This illness takes so much away from us. I will be thinking of you and everyone else here.

Hi,

Thanks, I think it’s mainly the polarising difference 12 months can make, and how mentally challenging that was to come to terms with, maybe if it had been a decreasing of movement over a longer period then mentally I would have been more prepared. Don’t get me wrong some days the pain is just awful and the amount of comments I have had at work saying I look ‘grumpy’ when it’s just me trying to walk as best I can without wincing to much.

It’ll be what it will be and hopefully I can get it under control, guess my days of running are over though, just getting better at it in my old age too. 😔

stickywicket

silverfoxxxx wrote:

the amount of comments I have had at work saying I look ‘grumpy’ when it’s just me trying to walk as best I can without wincing to much.

That triggered a memory, silverfoxxx. When I was in my early twenties and with no decent medication for my RA, one of my then fiancee's pet names for me was 'Miseryguts' :shock: I was never miserable. I am actually one of life's incurable optimists but, like you say, pain can tell a different story.

I got my own back by marrying him and that was 50 years ago.