Hello New to forum
Posted , 7 users are following.
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Notes on Hello New to forum
Bettebet Netta54
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HI Netta,
Welcome forum.
Sorry about you're arthritis diagnosis.
I hope this forum brings you support and comfort
lucynewas Netta54
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Okapis lucynewas
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Okapis Netta54
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Welcome! Although I'm sorry that you have the need! You are doing the right thing though coming to a discussion forum. I found a discussion forum, the late lamented PHO, invaluable in coming to terms with PsA. No one knew the disease existed so failed to appreciate the associated problems - "my auntie had bad "osteo" arthritis" Grrh...I tend to say inflammatory arthritis these days, gets a further question at least.
And yes it is the pits to work through the different DMARDS to find one that works! Each time 3 months before any improvement expected and then the drug can be tritrated upwards to achieve a better result. Alternatively you get a phone call saying stop the drug after a monthly blood test! I remember one of those in a house full of people. I think I literally howled after the phone call finished!
We are all our own personal guinea pigs. What works for one does not work for another..Its a roller coaster - a long one in most cases. So it pays to have a howl or a moan here. People understand when your nearest and dearest begin to loose the plot, the whole process is so strung out.
Which bits of you are affected currently? Its a will of the wisp disease coming and going as it pleases, giving your a flare when you least expect it! I've developed a habit of asking for a body cortisone shot for signficant events: moving house and going on an unusual holiday (Ethiopia) to keep myself moving.
I was on enbrel for 12 years and then developed inflammation in the jaw precipitating a change in biological therapy to Cimzia. So far so good.
There are lots of options but they take time alas but its important to think youre in a tunnel not a pit! There is light at the end of the tunnel (of the Drug/NHS process)
So Hi welcome to the world of PsA...a select and exclusive club!
Netta54 Okapis
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Thank you for your kind response. Good to hear about your journey, and treatments.
I've felt awful for about four years. Then last year I had a bilateral partial knee operation. Osteoarthritis had completely destroyed my knees joints, and I was walking bone on bone. Agony!
I didn't recover well from the operation. I was totally exhausted, all my toenails fell off, I was stiff and in terrible pain. For over a year I was fobbed off by docs. Eventually I insisted on being referred.
Then I became really unwell. I had a fever, weird rashes, and I was so stiff I couldn't roll over in bed. My inflammatory markers were high, but no RF. it was the lack of RF that docs kept flinging at me.
Eventually I was seen by rheumatology and diagnosed with seronegative inflammatory arthritis. Only just been diagnosed with psoriatic arthritis.
It's a horrible journey, but at least I'm being listened to now (mostly!).
Okapis Netta54
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Netta54 Okapis
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Well I think the toenail issue was a big clue! I saw three doctors, not one of them could tell me what the problem was. I was complaining of joint issues too, plus I'd been treated with scalp psoriasis about four years ago.
robert271163 Netta54
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Well you certainly not alone with the diagnoses, as you will have found out and others will say there are many medications that can be used to control our condition, sadly it can be a long road to finding the right combination for you.
As a fellow sufferer I am on Sulfasalazine and methatrexate and about to start on Cimzia on Thursday, it took 2 years to be diagnosed, its now two years later and we are still trying to find the right combination, I have good and bad days like most people with this condition.
I have other treatments like hot wax and acupuncher. You will goet there in the end it just finding what works for you.
best of Luck
Rob
Okapis robert271163
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Netta54 robert271163
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My biggest disappointment has been that I expected things to be fixed straightaway, once diagnosed. I had no idea that A) the treatment would be so awful, and B) it would take so long to find the right one!
robert271163 Netta54
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robert271163 Okapis
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Bumble17 Netta54
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I have had months on unbelievable pain my feet and ankles. I look back now, and cant believe I coped with this day in day out.
My first doctors visit was back in early May, but my appointment wth the hospital was not unitl Oct. Thankfully I was given an injection, which gave me some relief fairly quickly. I was put on Sulfasalazine, but after 3 weeks, I developed a rash, and had to stop taking them.
I have now just started a with Methotrexate,as the arthritis is in both hands. Thankfully, I only have very small patches of Psoriasis at the moment.
Netta54 Bumble17
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Hi Bumble
Sorry to hear you've had so much pain. I hope things improve soon on the methy. My rheumatologist is hold off giving me that particular drug, as I had really awful depression on the sulfasalazine. I think methy can also cause mood issues.
I take leflunomide now. I'm a bit depressed, but I think that's the illness and not the drug.
I'm wishing you a pain free Christmas 🎄
Bumble17 Netta54
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just remember that if ever you feel low, you can always reach out to someone here!
Have a good Christmas!
Okapis Netta54
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Yes watch out for depression! Its quite comon for PsA sufferers alas! There's the long slow treatment process whilst struggling with pain and having to come to terms in most cases with life/work style changes. I spent a lot of time being active - walking and skiing but found that since I could no longer keep up I began to be excluded. Big impact on my social life. Fortunately courtesy of the biologics I have recovered some of the walking - up to about 2.5 hours at a stretch.
Work was easier and with some help from the occupational health department in the form of voice recognition software - Dragon Naturally Speaking Professional, I managed even though I did eventually drop a day as I was getting too tired with 5 days.Finally though Atrial Fibrillation put paid to my working days...though thats better too now.
Dont be shy in asking for pharmaceutical help if you do find yourself crying and feeling helpless. Think of it as a pyschological crutch that you wont always need!
Netta54 Okapis
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Thank you for kind response.
Yes, I'm feeling pretty much excluded at the moment, but I think I've pretty much sent myself to Coventry! It's almost easier not to interact with folks, other than on a very superficial level. I live in a village, and am often being asked to social functions. Once a party animal, I now find myself knackered at the thought!
I've always been a big walker, and wild camper. It's frustrating I can't do that easily these days. I do walk my beautiful collie daily, and on a good day I am out walking with him the whole day! Though I do have to stop frequently. I find after a long walkabout I am smashed for a week!
I suppose the worst part is that other folks just don't understand that level of fatigue. Ho hum, I'm sure it will get better. It's early days for me yet in terms of treatment.
robert271163 Netta54
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This condition has turned my life upside down, I had to stop working as I was a chef, I could not stand for long periods because of my knees and feet and couldnt hold things properly especially hot stuff from the ovens. Doing preparation was also really painful to do due to be repetative.
My social life was severly affected as I am a Biker so i can now rarely ride my motorbike i used to ride 7 days a week now im lucky to ride once a month, and even then i can not ride any distance im lucky to manage 20 miles where as we used to go out for a days riding and do 200/300 miles.
So being depressed i guess because of getting used to the limitations of what we can do now and looking back to what we used to do, its also hard with having social media seeing all your mates out doing what you would love to do but not being able to even think about it.
we are all here because of the same reason so we are not suffering alone as BT once said its good to talk
hope your feeling better your not alone in this
Okapis Netta54
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No people dont understand the fatigue from pain! I'm glad you have a dog! I have a Rhodesian Ridgeback who keeps me walking...just had her 2nd b'day. Very good for both mental and physical health I reckon
Suggest you go to social functions even if its only for a short while and SIT! Ask for a chair or take a folding stool with you. You dont need to talk much...
AND learn about pain pacing - very important in order to cope. Means that you dont overdo it. So walking for a whole day is asking for trouble at the moment...off to find you a pain pacing web site- be back
Okapis Netta54
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OK one from the Scot's NHS
http://www.moodjuice.scot.nhs.uk/chronicpain.asp
From Arthritis Research UK -self management for long term pain
http://www.arthritisresearchuk.org/arthritis-information/arthritis-and-daily-life/pain-and-arthritis/pain-report/specific-treatments-and-therapies-for-longterm-pain/self-management.aspx.
Hope these get through moderation. Think site is set to prevent hyperlinks. These are respectable links however.
Pain pacing taught to me by a pain therapist after a T7 fracture was invaluable. Saved my bacon!
Okapis
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Okapis robert271163
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Ugh Robert that was a big and no doubt painful change in both social and work life...A chef very difficult and biking too! Oooo. I was luckier in not doing something quite so physically demanding. What are you doing now workwise? I'm fortunately now retired...
robert271163 Okapis
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Okapis robert271163
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I'm so sorry...I've been lucky in comparision... thinking of you..
Netta54 robert271163
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Thank you Robert
I love bikes! My brother was a biker until he got sick with heart issues. I used to ride on the back.
I'm just feeling particularly sorry for myself today. I get so annoyed with myself sometimes. I often have Basil Fawlty moments. The other day I fell over in mud (for the umpteenth time!). I picked up a stick and thrashed the daylight out of a bush! It scared the natives but I sure felt better!
I'm sorry you too are suffering.
Wishing you a peaceful, pain free Christmas.
Netta54 Okapis
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Bless your socks! Yeah, I'm not too good at pacing myself. When I get a day of respite I take off like a rocket! I walked 8 miles the other week, and was in absolute agony! It was worth it though. I'm a terrific nature fan and I so enjoyed walking along the river.
Netta54 robert271163
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Hi Robert
I'm not working either. I used to work in a high stress invironment in social care. The stress nearly killed me. I was glad when I was made redundant. However, there is a sense of loss at no longer feeling useful. Our identity comes in part from the work we do doesn't it?
I'm glad that you have a supportive wife. It takes time to get used to such dramatic changes in ones life. I'm still at the furious stage! But I'm grateful for good friends, my slightly wayward son, and a dog called Shep.
I've just got back from a walk through fields to local pub. I can't drink anymore, but I had nice lunch. People always talk to you when you have a dog. Shep is particularly handsome, with his one blue, and one brown eye!