Anyone out there with Psoriatic Arthritis?: I have been... - NRAS

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Anyone out there with Psoriatic Arthritis?

caroline777 profile image
14 Replies

I have been waiting to change from Enbrel to Abatacept and have had a barrage of blood test which showed that I have the HLAB27 antbody which is indicative of Psoriatic Arthritis. This usually, but not always follows Psoriasis which I do not have! However,sometimes it works the other way round. Has anybody else got any experience of this. This may also explain why the Enbrel was not particularly successful but Abatacept can be better in these cases - who knows, wait and see eh?

Caroline

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Beth58 profile image
Beth58

Hi Caroline, that gene is linked to Ankylosing Spondylitis do you have that?? Some of the AS support groups I'm involved with a lot of members are on Enbrel though some had bad reactions to it others sing it's praises. I think Abatacept is recommended as a second line drug, in other word only used after Enbrel has not had a satisfactory outcome. So fingers crossed this one works for you.

Good luck

Beth xx

caroline777 profile image
caroline777

Thanks Beth. Yes I have it in my neck and have had for several years. The inflammatory arthritis started about 2 years ago and I had been diagnosed with seronegative arthritis. ESR remains high but that's about it. Am hoping the Abatacept will be better than the Enbrel!

Caroline

x

Hi Caroline,

While Ive not been told i Have this, nor am I sure if Ive been tested for it, I have lately become quite badly covered in patches off Psoriasis , I plan on mentioning it at my next rheumy appointment however its not due till April.

My doctor knows how bad its been however he hasent offered any tests etc, now I know the name off the test youve had done I may ask my GP next time I see him, Enbrel also failed for me to!?

caroline777 profile image
caroline777

Oh, that's interesting. My rheumy also told me that there is an alternative to Methotrexate that we can try which PsA responds well to but sadly I have forgotten the name of it! Not helpful I know! I will let you know when the approval comes through for the abatacept and how I get on.

Hi Caroline - when I was undiagnosed I looked into PA - having grown up with chronic eczema I know several dermatologists and was aware of this form of Inflammatory Arthritis. I gather that some people don't get Psoriasis with it - especially not in the early stages but crinkled/ indented nails are common with pinking around the cuticles?

A good place to go for more contact with PA sufferers is the Living With Arthritis forum on Arthritis Care. There are at least 4 or 5 regular contributors with PA and they will be able to tell you what drugs have worked for them and which ones have failed? Tilda x

caroline777 profile image
caroline777

Thanks Tilda - that's really helpful - will have a look. My nails are indented - i had put it down to drugs. big toe nails have also lifting a bit from the nail bed which i thought was a fungal infection!! Will have a look at the website you mention.

Caroline

xx

Hi Caroline,

I have Psoriatic Arthritis and RA. It's a bummer. Started in my spine, with Spinal Stenosis and degenerating discs and vertebrae. Have had 8 spine surgeries, consisting of removing the top of the vertebrae and the discs, and fusions with my own bone fragments taken from the pelvic bone, then supported with titanium rods and screws, and in the neck, added plate and screws.

That began In 1985. I have always felt if I could have had the drugs that are available now, maybe I could have contiued to work to retirement age, maybe I could still drive, oh so many maybe's.

So, hopefully, something will work well, the whole secret is patience. It takes time for these drugs, the dmards and biologics, to get into the bone itself and then begin to make changes.

As history, I had Psoriasis since I was a baby, though wasn't diagnosed until I was 10. Along the way I was warned that I could developed the arthritis. Prevention for that would have been to keep the skin Psoriasis in check. They just didn't have the drugs then.

I have been on Enbrel and Humira biologics, and now Simponi. Have had that for the last 15 montths and I do think it has made the best difference.

Have also had both knees replaced 5 yrs ago, and 3 hand surgeries. Right now I'm dealing with a very painful and virtually useless rt wrist.. Have an appointment Feb 10, to see an Ortho Hand Surgeon, to see what, if anything, can be done.

I encourage you to just take the meds as your Rheumatologist advises, give them atleast 2-3 months to work. Some people respond to some of them, some to others. I'm pleased with Simponi, along with Methotrexate and Arava, and Neurontin and tramadol, and Vicodine to keep the pain under control. And Rest. Pacing yourself, alternating activities with rest.

Wish you well, Caroline. Loret Xx

in reply to

as an addendum, My sister, 9 yrs younger, has Psoriatic arthritis, and her arthritis preceded the actual Psoriatic plaques by 4 yrs. She does very well with Remicade.

caroline777 profile image
caroline777

Thanks Loret - you really have been through the mill. i hope the drugs reduce any further damage for you. I do get very tired and have recently found a job closer to home following three months off work where I was travelling some 600 miles and then could hardly get out of the car! I have done (more or less) everything i have been told with the drugs which are pretty well tried and tested in a lot of cases but hope that the next lot will hit the mark.

I wish you well with your appointments and hope they can come up with something that will at the very least help the pain.

Caroline xx

in reply to caroline777

Caroline, I believe the drug, alternative for MTX, is Leflunomide (Arava) Many of us are taking both, some even plus a biologic. I do feel like I'm playing with a bunch of chemicals, but the choices are just not there! Good luck, keep in touch. Loret XX

LavendarLady profile image
LavendarLady

Hi there, my hairdresser has psoriatic arthritis and is on Humira injections and morphine patches. She is also on a couple of other drugs which seem to keep her functioning quite well and enables her to do her job,

LavendarLadyx

juliep66 profile image
juliep66

Both my husband and myself have ths condition which tends to impress the doctors ! Although i have had no actual patches of the skin complaint I had biopseys which confermed my condition, my hubby is on mtx and i am on embrel both are working well for us, I was on morphine and other treatments but after 3 months on injections things have settled down. Both our nail beds lift but we look after them so not to get infected its an on going problem. The embrel injection's leave bad reaction site but as you go on get better, anything is better than the pain al the time. We are happy to suport others with the condition x

caroline777 profile image
caroline777

Hi Julie

I'm now on methotrexate injections which are said to be 30% more effective that tablets and Cyclosporin. I recently had steroid injections into my hips and shoulders which eases things for about a month - 6 weeks. Still no sign of any raised patches of skin but nails are getting more indents now. Oh yes and my rheumy says I also have fibromyalgia Lol!! Good eh!! My rheumy is very interested in me, you are right, I think it is a slight deviation from the norm but that about sums it up for me!! Anyway, can't complains as I am working at the moment and still managing reasonably well. nice to have your support.

Caroline

xxx

darryn profile image
darryn

hi people i have psoriasis with psoriatic arthritis. been on most meds stated above been ill with this disease since about age 26 im almost 52 now, tried enbrel ect best so far is stelara but in australia to get injections you must be more than 70% covered in psoriasis. or you dont get access to it through medicare, and dr cant state embrel didnt work or your cut off and cannot have access another enmbrel type drug through medicare, the drs got cunning state enmbrel wasn't working well enough so they can try another, i have pain in feet, Achilles tendons, left hip, left shoulder, and behind shoulder in rear joint, lower back middle back, neck leading pain out too both shoulders, hands. thats the worst pain spots have many others, i am in a flue like state all the time, stelara helps with skin and pain, skin is not fully cleared up. but most leg and arm dead skin is gone, no more bleeding or skin coming off. back still has some, head still bit itchy but to what i was like ill take it. my legs have big freckle patches where skin was bad, like from sun damage. im taking mobic and arabloc, gp took me off tramadole and panadiene forte put me on morphine patches started at 20mg up 5s till im on 30 now, helps back about half, feet ect still bad. im at drowsy stage at 30mg. which i dont like. stelara is great some relief when your so bad is massive, i get to sleep more now, many years i was getting 2-4 hours sleep between pain and scratching you cant sleep. pain was so bad i could not even roll over in bed. i have a very high pain tolerance. ive noticed i have more severe pain in joints left side, left foot, shoulder, hip are more painful than right side. anyone else get that?

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