zero negative arthritis

krustyzidane

Hi everyone this is my first time writing on a forum. I have been diagnosed with zero negative arthritis but also been told it could be psoriatic arthritis and also had mention spondylitis.(please excuse spelling as i am terrible)
I am now on about to start my 3rd type of anti tf treatment. At the moment i am on tocilizmab and it has stopped working. Every major joint in my body is affected along with my hands and feet.
I was wondering if anyone else was going through or has gone through anything similar. I am 33yrs old and was extremely active. i used to train 5-6 times a week, played football and all kinds of sports. I have a young daughter and want to be able to enjoy doing things with her. IT feels like there is no hope. A lot of my family and friends dont understand how much it is starting to effect me. Any advice would be really appreciated.

dreamdaisy

Hello, it's nice to meet you and I hope we can help with information and support. I am older than you but I too have PsA (which is indeed a sero-negative form of inflammatory arthritis). For a number of years I was classed as an 'inflammatory arthritic' because my inflammation markers were very high but no more seemed to be amiss. Then, nine years on, my skin helpfully obliged with a bout of P on my soles and palms and my label was changed. The meds remained the same.

An auto-immune arthritis is a tricky beast to diagnose (and treat). It can take time to find out exactly what is going on, and then further time to get the balance of the meds right for you. In the meantime tiredness and pain are par for the course. What was the diagnosis for the other anti TNF treatments? Did you 'fail' with the standard DMARDs such as methotrexate and sulphasalazine? Are you taking anything else to support the tocilizumab? I too am on my third anti TNF and, although not wonderful, it's doing its best to help.

Regarding friends and family I suggest you google the Spoon Theory and There's a Gorilla in my House, they both give very clear explanations of the struggle we face on a daily basis. I have lost count of the number of times I am told 'But you look well.' So what? Looking is not the same as feeling.

I now have to go and cook but I am sure others will be along soon. I wish you well. DD

stickywicket

Hello krustyzidane. It’s good to meet you. As DD has said, inflammatory arthritis can be a difficult beast to pinpoint but, as the meds are the same whichever flavour we have, it doesn’t matter too much. How long have you had the diagnosis?

There is hope. You will always find ways of doing things with your daughter though they may not be the things you originally had planned. The point is to have fun together. I had a great time with my two sons and I now do with my grandsons. We just have to adapt and be flexible with our plans.

I hope your new anti-tnf will work for you. Have none of the other treatments helped at all?

As DD has said, do google The Spoon Theory and The Gorilla thing. They are very helpful.

DebbieT

Hi & welcome,

I have psoriatic arthritis (PsA) & Osteoarthritis (OA). I'm on 30mg a week of methotrexate (mtx) to treat the PsA & Plaque Psoriasis. I was very lucky & had a quick diagnosis as I have severe chronic psoriasis at the time & the erosion of my hip bone was classic to psoriatic arthritis. I've yet to be offered anti tnf treatments & have been fighting a constant drug resistant chest infection since the start of April, it's exhausting!!

As DD has said, getting the right med for you & at the right dose is hard & takes time but hopefully you'll get there soon.

I have a 3 year old Grandson & our 1st Grandaughter is due in November so I completely understand your desire to be able to play normally. As i can't & to make up for it we've built a park in our back garden for them. I always thought being a young Mum then Nanna would mean we'd get to do so much more with our Grandchildren but since i turned 40 my mobility has crumbled. My point is tho you are on the 'big guns' regarding ure meds & hopefully uve been put on them early enough that they'll be able to really slow down the progress of ure disease ... I have my concerns for myself on that front but my kids are all adults now so it's easier. I know it must seem like you aren't getting anywhere right now but you are, even if it's to rule out another med & start another one, hopefully tho this is the right one & you just need the correct dosage

Our lives have to become an adjustment to wot we thought it would be ... But it's still all worth it in the end. I've got 10 years on you so maybe it's a bit easier to swallow such a bitter pill?! Try to pace ureself in all things at all times, it's the hardest lesson to learn I think but the most beneficial

Stay positive if you can & post on here wen ever you need to, I've found it really useful coz the members are massively knowledgeable!!

Take care.x

barbara12

Hello and a warm welcome from me
Sorry I cant help ..I have OA but I just wanted to add my support..I do wish you well with your treatment x

krustyzidane

Thanks for coming back so quickly. I have tried all the other medications but nothing eased the arthritis. The only medication that seemed to help was steroids but I have been on a high dose for 2 years and just want to get off them as the side effects and long term damage they are doing worried me and my body is starting to get used to them. I have also stopped taking pain killers. I was taking maximum strength tramadol just to take the edge of the pain. I would have to take twice the dose to kill the pain. A close family member who also suffers with arthritis has become addicted to pain killers and done damage to there liver. This has scared me so I have been pain killer free for 6 months which probably isn't helping.

stickywicket

Maybe you can find a happy medium with the painkillers, or paindullers as many of us call them. If you can manage without them all well and good but it's useful to have something for the really bad times. I agree that the body gets used to them so higher doses can be needed to maintain the same effect so I always reduce again asap.

I'm so sorry that pain meds damaged your cousin's liver but, with care, that shouldn't happen to you.

I agree that long term steroid use brings its own problems.

DebbieT

Have you tried switching to slow/moderate release tramadol? They tend to be kinder.

My view on pain dullers is different from ures coz I think as arthritis is a lifelong disease it's going to need lifelong treatment & part of that is treating my pain. Due to my meds I have very regular blood tests & LFT's are ran everytime so they'd pick up any changes very quickly!! I have Fibromyalgia too tho so pain is a massive part of my daily life even if I didn't have arthritis :?

x

Boomer13

Hi krustyzidane;

I have a similar story to yours. Seronegative arthritis, possibly spondylitis, or psoriatic. I also was very athletic; constantly training, strong and fit.

Mine started around the age of forty in my hands and wrists. Although, when I think back, I was having trouble recovering from exercise before that. Five years later it was all my joints and back too. It is always getting worse. I had some pretty big delays in getting on DMARDS (now on mtx and plaquenil). Still doing dose adjustments and waiting for something to work.

The past two years I was able to do a tai chi class (I can't anymore) and that was very helpful for keeping my muscles, balance, etc. and to ease stress. I'm hoping to get back to practicing it again one day.

I think as long as you have other anti-TNFa's to try you should be hopeful that one of them will work for you, alone or in combination. In the meantime, there are lots of lovely, helpful people here ready to answer questions, listen, etc.

Best wishes.

villier

Hi, just want to say hello and welcome as it is OA I have I just want to give you my support, hope to see you around..............tc..........Marie xx

dreamdaisy

Arthritis = pain, end of. Everyone differs in their tolerance levels but regular doses of pain dullers are an important bit of kit in our arsenal for managing the more debilitating aspects of the disease. The more 'effective' the pain relief the more you are taken away from the pain, not vice versa, and it always comes back. I manage on maybe four cocodamol (30/500) per day, I can increase it to six if required and then that leaves me the option of the trammies for the bad times. Yes, I could take the trammies all the time but then where would I turn on the bad days? The pain became harder to live with when I took myself off the oral steroids (for precisely the reasons you stated and it took most of 2011) but I've adjusted to it now.

A little while ago I attended a course run by AC about living with a long-term chronic condition and we did a very interesting exercise. We had to sit for thirty seconds, in silence, and concentrate on the bit that was hurting the most. We did, those thirty seconds crawled by and we all reported an increase in pain levels. We were then asked to sit for thirty seconds imagining how we would spend £10,000. The time flew past, we all reported a decrease in pain levels (because our brains were focusing on summat else) and then we were told that in fact we'd sat for forty-five seconds. Distraction works better than pain relief, but pain relief does have a part to play.

It's very easy to keep reminding oneself about what you can no longer do - we never seem to value the things we can still manage. I was rather unhappy when I bought a rollator to help me with my walking but that has re-opened activities I had stopped because I can walk further and for longer. OK, so I can't do a cross-country hike with it (well, not with this particular model) but I can get out and about again. That is a Good Thing. DD

Boomer13

Hi again;

Here is some information for you on addiction vs. dependence on pain medications. As I understand it, the effects of pain medication on the body are very different in the chronic pain sufferer vs. true addiction ie using medication for recreation/pleasure. As long as you are using your medications responsibly you needn't be afraid of becoming addicted. You may become dependent on pain relief which very different from true addiction.

http://health.howstuffworks.com/mental-health/addiction-v-dependence-on-pain-medications1.htm

There are many problems associated from denying a pain management program for yourself, from declining quality of life and time with family, to sensitizing your nervous system to feel higher levels of pain. It may be a topic you need to revisit with your doctor, or ask to be referred to a chronic pain clinic. There are really good pain management regimes available and, under the care of a good doctor, you needn't fear the addiction issue.

Anna

krustyzidane

Thanks everyone for the support and advice.