spsoriatic-arthritis
Posted , 3 users are following.
Does anyone have any info on this condition? I'm currently having tests done with rheumatology after years of chronic back pain and then having a flare up earlier this year which effected all my joints and fingers and toes, sporiosis and rheumatoid arthritis run in my family but iv suffered with chronic back pain for 13 years after a fussion but now think it may be related to more than just the opp, my worry is that iv just come off opioids and scared to start new meds if this is the case and was wandering what the side effects are 😊
1 like, 29 replies
lucynewas Carolineq8
Posted
Hi Caroline. First of all if you click in my name you'll find all my posts. By all means then PM me if I can help.
Okapis Carolineq8
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Its not an easy diagnosis - done by elimination mostly as it is sero-negative ie does not show up in the blood except through the normal inflammation markers CRP / ESR. These are not necessarily reliable either. Sausage digits and a history of psoriasis in the family are strong clues! About 20/30% of those with the skin disease develop the arthritis depending on whose research you look at.
Early and agressive treatment is now reccomended for those with PsA. Many of us have experienced long delays in diagnosis as the link between the Skin disease and the arthritis seems not to be well known by GPs. So early start to the treatment is sometimes not so early!
There is a hierachy of treatment depending on the severity of disease: prescription NSAIDS, painkillers of increasing strength up to tramadol and then or plus DMARDS (Disease modifying anti reheumatic drugs). Probably the most common is methotrexate, once a week, gradually increased in dose until it appears effective. You will see that there are many others as well and they may be tried together.
Once you have tried two traditional DMARDS in the UK, which either fail after time or have no effect you qualify for the new biological therapies such as etanercept (en/m?brel,) Humira, infliximab. There are quite a few with new ones appearing all the time. They are expensive but offer a good quality of life.
Try not to be scared. The monitoring of drugs given to you will be regular and support in hospitals is generally good with a good rheumatology nurse - nurse practionners or consultant nurses. There is a clear trade off between quality of life achieved with the drugs with pain and any fear you might have - very personal decision.
As you are probably beginning to realise there is quite a personal prescription voyage to be undertaken here. We are all our own personal guinea pigs requiring a lot of patience.
Its a very good idea to come to a discussion forum for support as you will probably find that you friends and family will find it difficult to keep up or remember. It made a big difference to me. I didnt feel so alone and if I needed it I could have a big wail at what was happening to me. People understood and had helpful tips or comments.
Carolineq8 Okapis
Posted
Thank you so much for replying and the info you have given is brilliant, I haven't been diagnosed yet but undergoing tests at the mo with this being a possibility, I will keep you informed with any updates but may be a while as I have to wait at least 6 weeks before my MRI, once again thank you for your time 😊
Carolineq8 Okapis
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I'm in so much pain right now in my spine, arms, legs, feet.., I can't stand up it's unbearable, tried naproxen and Lordine but having no effect other than cramping my stomach up, I'm not sure how much more I can take of this it's just relentless and each day is becoming an impossible task to do basic things.
Is it worth ringing rheumy or GP to see if I can try a different med until I get a diagnosis ?
Okapis Carolineq8
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Half the battle with pain is pyschological! Its purpose is to make you pay attention. Pain will get worse in a upward spiral unless you can find away to start the downward spiral. Look up pain pacing and mindfulness. The key is distracting yourself from the pain or stopping before the pain hits so the signals get less..probably sounds a bit bizarre from where youre at. It did to me when I saw a pain therapist for a fractured T7 Vertebra but what she taught me worked! I still use it (pain pacing) today for PsA.
Thinking of you, keep warm and phone the hospital tomorrow or ask the GP to do it.
Carolineq8 Okapis
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I'm not sure when my next app is but I'm going in for faucet and sacrialic joint injections on Friday (through the pain clinic ) andbeen having these for 5 years now but this last lot didn't work, I now have to wait at least 4 weeks after these before I can have my MRI scan because the cautizone in my body will mask the readings, I'm just so exhausted with it all and find that I'm breaking down all the time and infront of my kids, the phycologiical side is definatley the hardest to Cope with and it feels like I'm loosing this battle, iv had chronic pain for 13 years now but this last year has taken its toll, I'm just trying to get through each day right now, thank you for replying sometimes i need to just sound off away from family as I feel like everything revolves around this and it must be getting everyone else down, I know I get on my own nerves with it so god knows how everyone else feels, once again thank you 😊
Okapis Carolineq8
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Yes I understand only too well! You need a place to whinge and wail at your lot! Absolutely necessary and you cant use your nearest and dearest all the time. Its too much. Thats why discussion forums like this are so invaluable.
Your condition sounds complicated! I've had facet joint injections for the T7 vertebra. Didn't work twice! But at least I was referred to a pain therapist. Where are you? What sort of hospital are you attending? big or small?
Try and think of the black pit you might be in now as a long tunnel with light at the end. Might be dark now but there is light at the end.
Are you keeping going doing everything for kids and family? Because if you are you probably need to take a break? How old are the kids?
Carolineq8 Okapis
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I'm under pain management at a great hospital for pain after lumbar fussion, I also have a cyst compressing my thoracic spinal cord, c6/7 bulging disc, and cervical degeneration with multi level bone spurs and a few more things, the test for arthritis only came about after I had a flare up earlier this year where my fingers toes and all my joints where affected especially my neck and spine but for years we've put the pain down to everything else that's going on
My kids are adults 22 & 18 and there brilliant but I bottle it up so they don't see me like this then I just break down which is happening all the time now, it's the guilt I feel for putting them through this, I'm hoping after my injections on Friday I'll have some pain relief I'm struggling to stand up for even a few minutes at the mo, thanks for listening 💖
Okapis Carolineq8
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Ouch that sounds like real basketful of grief! You have been through the mill. I do hope it wasn't an inflammatory arthritis all along causing problems? Can the cyst be got rid of or is it too close to the spinal cord?
If you feel you have come to a dead end in treatment, its worth discussing a second opinion from another hospital with your GP. Sometimes a fresh pair of eyes can see matters from a different perspective.
I hope the injections on Friday bring you some relief. Although didn't you say you had to hold off for a MRI?
Carolineq8 Okapis
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The MRI has to be at least 4 weeks after I have the injections but I'm going to call tomorrow and see if I can get in before Friday, the cyst will paralyse me if they remove it it's compressing my spinal cord and i went to London to see a top neuro surgeon who said the same, they don't seem confident with the surgery and it was caused by the lumbar fussion I had but left undetected for 9 years. I think it has been inflamitory but just put it down to everything else but it's gone to another level this year, my gp has been brilliant as soon as my joints swelled he was onto rheumatology so now it's just a waiting game I suppose 😊
Okapis Carolineq8
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Aie! Medical misfortune! Bloody cysts. I wonder why the lumbar fusion made it grow? I've had an ovarian cyst 6.5cm ( and expanding fast) and one on a finger joint but near the spine..oh dear, you really have had a rough time of it! I wonder if rheumatology has the key to the pain? When are you next seeing the rheumatogist? Maybe there might be some answers there that will address some of the pain.
At one point in the past, about 17 years ago I think, I had had so many medical problems that I was feeling somewhat oppressed - why me? GP had said to me dont go thinking youre feel better off underground. Friends and family were loosing my medical plot - couldn't remember it all so I stopped telling them except my brother a doctor. Mixed blessing though he kept telling me what the doctor should do and expect me to pass it on putting me in an impossible position! Became rather isolated but saved by a discussion forum.
Anyway I had an abdominal scan for something...and lo and behold I had gallstones - Dad, Mum and little Jonny I called them. I turned a corner and started laughing at my medical misfortunes. It was an extraordinary thing...I just accepted what was happening to me and tried to get on with life as best I could. The gallstones got me in the end - ended up with an abcess in my gallbladder - courtesy of poor adminstration in hospital...
Hope you can find a corner to turn! Thinking of you!
Carolineq8 Okapis
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Ye you've been through it as well, not nice! Ye there's days I just don't know if I can do it but my family keep me going, same as you tho I dont tell them the half it's just boring to everyone, when I talk about it it feels like it's someone else's life not mine.
Not sure when my next app with rheumy is im still waiting for a scan date so I'm sure it will follow that, going in on Friday tho for injections so hoping for some relief, thanks again you've pulled me through a few dark days 😊
Okapis Carolineq8
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Carolineq8 Okapis
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💝
Carolineq8 Okapis
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I got a letter today from my rheumy and it basically says that I'm being tested for HLAB27 and that I may have inflammation in my spine and joints and that there are some types of arthritis that can cause this i.e. ankylosing spondylitis and that if I where to be diagnosed with some form of arthritis that this would take time and hard work for symptoms to improve, I'm still waiting for MRI but iv read up on this and apparently even these can still come back negative even if you have it.
Okapis Carolineq8
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Yes but there are effective treatments to halt the progresssion of the disease Caroline...yes it does take time but it does mean there is light at the end of the tunnel. I wonder how long you've had it?
Okapis
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Carolineq8 Okapis
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Brilliant, thank you, oh and I guess a long time when I think back to the back stiffness and the snapping pain I had years ago but just put it down to the opp 😊
Carolineq8
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I'm at my gps tomorrow do you think it's worth asking for a different anti infamitory because nothing's working for me at the mo and my mood is so low, not sleeping either, thank you
Okapis Carolineq8
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Which ones have you tried? If you've only been on one yes its definetly worth moving to another. I worked my way through most of them - Arthrotec, Celebrex, Lodine ( gave me brocho spasm) and Naxproxen until my kidnies said Oi! time to stop. Are you on both NSAIDS and painkillers cant remember - if not you probably should be. But I feel sure you've tried them all. Tried butrans patches? I just looked back you've tried both naxproxen and lodine so you have a couple of others to try - worth a go.
I've never been prescribed it but so some PsA sufferers are prescribed it and benefit from amytryptaline (spelling?) at a low dose for relaxation. Suggest you discuss with your GP to help you sleep and maybe an antidepression drug such a citalopam?. In fact how about suggesting your GP ring the Rheumatologist to discuss pain relief given the slowness of the NHS process? Depression is a common problem amongst those that suffer from inflammatory arthritis I'm afraid.
Not surprising really, it knocks the stuffing out of you in more ways than one. Taking an anti -depressant should perhaps be considered as a crutch to use to help you through a period of time during further investagation?
Thinking of you - ugh and Christmas looms with all the extra effort that involves! Sorry I enduring a flare at the moment grrrrrh thats a growl. In fact trying growling as a therapeutic activity...I do it and end up laughing at myself!
Okapis
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Carolineq8 Okapis
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Ah I'm sorry to hear your not good today, I hope it dosnt last to long 💖
Iv been on a few opioids but they don't agree with me and iv just spent 7 weeks coming
Off the last lot I was on for 2 years, it was hell and don't want to go through that again, I lost so much weight and really began to feel unwell, the NSAIS iv had lodine naproxen and ibuprofen and they all mess my stomach up and I take omprazole, for pain I'm taking co dydramol, gabapentin and diazepam for muscle spasms but have a cupboard full and just seem to rake through them wandering what to take next, I will see what my doc says tomorrow but I think it's time for a change however amatripaline dosnt agree with me either, thank you for your help, sending hugs to you and hope your feeling better real soon 💞
Okapis Carolineq8
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My skin has rejected Butrans patches as well as Butec so wondering where next myself?
Carolineq8 Okapis
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Ah really well lets hope something new is round the corner for us, I hope your ok and managing to get through this bad spell 💖
Okapis Carolineq8
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Carolineq8 Okapis
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Ah that's brilliant 😊
Carolineq8 Okapis
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So just been to docs and he's gave me venlafaxine 37.5 MG x 1 per day, any thoughts anyone
Okapis Carolineq8
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Carolineq8 Okapis
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He said a neuro doc had suggested them for a patient and it was something used years ago for depression but not so much now, so we'll see 😊