new to this so please be gentle, i have had psa for around 2 years with spondyloarthritis. over the last 6 moths i have been in so much pain,always light headed and dizzy with horrid sick feeling. been told its all to do with meds but no one seems to understand and offer help.after doing lots looking at a number of helpful sights it seems that its a mine field.
does anyone else suffer with above symptoms or is it just me or maybe i am at last going mad…i have also been having strange pains in my arms over the last 3 weeks it seems that every week something else pops up to help me suffer…
Have you reported these symptoms to your rheumy? I know I'm starting with the most obvious thing, but perhaps it'd help if you could tell us a little bit more about what the doctor(s) have said.
Hi .yes told them many times I had a steroid injection to try and help but joy.they want to increase my methotrexate but I have horrid side affects with it I don’t want them to . And some times I feel that they don’t understand the pain issue .
Hi there, the pain, I'm sorry but I'd forgotton you are a UK patient. My apologies. There is a clear action plan in the UK for the treatment of PsA and if you're having an inadequate response or intolerable side effects to methotrexate at 12 weeks it is time to move on and try something else. What is usually offered is leflunomide or sulfasalazine ... unfortunately these can take 8 - 12 weeks to work as well but the sooner you are moved on to a second DMARD the closer you become to being prescribed a biologic .... I'm including here a link to the easy to follow flow chart that accompanies the NICE guidelines which shows the process to getting on a bio.
Please stay stong and ask about the alternatives to methotrexate. Sometimes the medics try to ride roughshod over us but you are perfectly entitled to say 'enough is enough' I can't function on this treatment (which sounds very much like the dizzy, lightheadedness you're describing). I've been where you are now and moved on to leflunomide where the difference was night and day.
Did you see in your welcome message I mentioned that you are not far from 'the' UK centre of excellence for the treatment of PsA (I've been there!). So please keep fighting and don't lose heart in the prospect of improvement.
Ask any questions you need to so we can help you move onwards and upwards. Kindest, Jules
Thanks for the advice jules .I have got appointment this month so will see what happens …I will say that gwh Swindon do what they can and will answer calls and book you in the next day if you are having problems .but seem lost as to what to do when you get in front of them .
Here is a link to the Royal National Hospital for Rheumatic Diseases website. If you check out their specialist PsA clinic you'll see the details of the doctors and nurse specialists involved and can check out their qualifications and experience (you'll be blown away!). I think you'd need to get your GP to re-refer you there. Always worth having your next step in mind but I hope that maybe you won't need to if your appointment moves things forward for you. Fingers crossed.
I guess I was thinking in terms of a pain management referral or perhaps imaging to get a clearer idea of what is going on. Getting both or either might require a bit of pushing on your part.
I second Jules' suggestion about the Bath hospital if you're thinking of getting a second opinion. Haven't been there myself but I understand that they take things to a new & possibly better level.
I thought that spine involvement made progression to biologics that bit easier in the UK .... or perhaps that's specifically for Ankylosing Spondylitis, worth checking out I think.
But again & again the experience of patients in the UK, and elsewhere come to that, suggests that a squeaky door gets the most oil. If it's time to get more squeaky we're right behind you!
The pain, when you have this disease, it’s not only a case of getting a diagnosis, it’s also really important for your practitioners to get a good sense of how active your disease is, and to get an accurate idea of how your treatment is working for you. Unfortunately, blood tests and even physical examination doesn’t always tell the story. Your blood work may show nothing much out of the ordinary, and yet you can be on fire with PsA inflammation. That is so with about fifty percent of us. When they twiddle your fingers and toes, they can assess whether you have joint inflammation there, but that won’t help them know that you ache all over from inflammation in your tendons.
It’s great that the hospital responds to your calls for help. Here are some suggestions for how to help the process along when you get in front of them.
Thanks seenie.
My bloods ls always normal and inflammation is never a problem .but I hurt from head to toe daily and life just seems to be a struggle . .its hard to explain to family how it feels as you can’t see what’s going on . I am very grateful for all advice and to know I am not alone
You’re welcome, TP. I guess you are in the 50% of us that have inflammation without its showing up on a blood test. Me too. Many a doc’s been thrown off the scent by that one. Sounds like you have The Fatigue as well, which, personally, I found harder to cope with than the pain.
How about introducing yourself and telling your PsA story on the New Members’ Check In? Click on DISCUSSION in the green band above, and scroll down until you see New Members’ Check In. (It’s about ninth or tenth section down.) Click on the title, look for the +ADD button, and away you go. There’s some good reading there too!
Just realised I've been making assumptions .... saw 'spondyloarthritis' and thought 'spine'. But of course it is the 'family name' for several diseases including PsA with or without spinal involvement.
It's just not a term you hear that often. Is your back involved ....? Please put me out of my misery!
I do apologise for causing confusion. The trouble is that some of these terms look & sound similar but mean different things.
I assumed you had inflammatory arthritis in your spine. Do you by any chance have a letter from your rheumy that lists exactly what they've diagnosed? It's the spelling of the spine one I'm wondering about. Just being nosy really, although that could make the picture clearer.
Something that has not been mentioned is water, plain old water. Are you drinking lots of it, at least 2 litres a day, every day? It seems too simple to be important but when you're taking Methotrexate it is vital to drink extra water and it can make a hell of a difference. It might well help a lot with the dizziness and queasiness.
The other thing is keeping moving. Are you able to do some exercise at all? Nothing extreme is required, a daily stroll and some gentle stretching can help with joint pain.
I guess I'm thinking that if you do these things and the pain and dizziness etc. stay just as bad then you'll know it is really time for your rheumy to come up with a different approach.
Morning sybil.just found my diagnosis it’s as follows .psoriatic arthropathy with spondyloarthritis psoriasis. Yes do drink lots of water and have very active job it’s seems okay when I work but as soon as I stop even for 5 min it just smacks me with pain. Weekend is always a pain as like to take it easy but that is not the rite thing to do as it causes pain .sigh . I know that in life plenty of people suffer more than I do and have more to cope with . It’s not a woe is me I just would like some relief from pain . . But hey the sun is out and we are still breathing life is not all bad .
Morning, the pain. Stiffening up and pain when you stop moving is the classic PsA inflammatory response so I know you say you have no inflammation ... maybe no markers in your bloods (nor me!) ..... but the evidence is indicating otherwise. I was wondering whether you might find the book we mention in book reviews helpful, it's only a few pounds and available in paperback and on Kindle - Psoriatic Arthritis the facts by Drs Gladman & Chandran.
On the exercise front, I have found that going to hydrotherapy has kept me moving well and helped restore range of movement in some of my worst affected joints. I cannot under emphasise how good waters feels even if all you do is bob about. Check out your local independent physiotherapists as many hire a local pool and run sessions with 2 - 4 people so you get a personalised exercise plan and expert care in the pool. Quicker taking matters into your own hands than asking/waiting to see if anyone in the NHS proposes it ;)
Morning jules . Yes do a swim twice a week and mainly just a bob around and it helps until I get out . I can’t understand how the methotrexate isn’t helping with any pain and others find it does . Thanks for book advice .
Unfortunately not everyone responds to methotrexate or, indeed, the other treatments. Simply 'one size' does not fit all PsA!! That is why NICE publish a clear treatment pathway so that patients get escalated through to find an effective medication for them.
Mtx was rubbish for me but leflunomide was great for a while and now I'm on a biologic things are really much, much better apart from where my problem is damage. For me, though, it even took a second biologic to get improvement.
There will be something that will give you more pain relief and disease control than you're currently getting but it sounds to me, if I may be so bold as to say it, that you need to be pushing your docs to move your treatment along. Take a look in Cuppa House, a while back I posted an article on how to be a pushy patient.
Not wanting to scare you, the pain, but if you're not getting proactivity from your docs you can't afford to sit back and do nothing yourself to push treatment forward because uncontrolled PsA will be doing its irreversible worst in your body. And what I hear from you now is that things are already pretty bad.