Psoriatic arthritis

[Ozzy]

Just back from the hospital and now been told instead of sero neg ra I now have pa. So no more Humira for me. Now on ciclosporin twice a day. Dmard number 5. I dont know why the change as nothing new has happened apart from more and more joints are getting painful but the only skin problem is a red patch from where I had a steroid injection 3 weeks ago. My bloods as normal are fine ESR 11 and CRP 2 anyway I guess I will have to wait and see if it helps with the pain in my knees, hips and fingers, I would really love a good night sleep.I putting that on my christmas list. Thanks, its helps to have somebody to discuss these things with.

[Hidden]

Hi Ozzy. It's a strange old business this rheumatology isn't it? I know my consultant advised me to keep an open mind when he gave me a "working diagnosis of RA". Did no one explain how they had reached this new conclusion then? I hope the Cuclosporin works well for you anyhow. Tilda x

[Ozzy]

No I just had an appointment in the post to see the ra nurse for some new treatment, when I arrived she asked if I had been given a prescription etc. I said all I new was when I saw the NEW ra doctor he wanted xrays and blood tests done to check my meds. Apparently he is throughtly going through the histories of the longer term people so that he can access us better. Not a bad thing I guess, but it would be nice to of had some warning and maybe a leaflet about pa.

[Kathyfitz12 in reply to Ozzy]

It is an excellent idea for the new doctor to review original diagnosis. I was lucky enough to have medical insurance when I was first diagnosed & I went to a Professor at a large London hospital & went through tests that lasted hours. On receiving his report my RA Consultant was able to prescribe treatment right away without putting me through all the trials on different meds that a lot of patients have to endure.....OK the first treatment made me sick - but 2nd try & all was sorted, and have pottered along on MTX for years. Good Luck Ozzy I hope your new doctor continues with his intention of invesigating the long term RA patients on his list.

[earthwitch]

Was humira working? I don't understand why you have been taken off it as it is a perfectly appropriate drug to use for PsA.

[Hidden]

You really concern me as I have PsA and I know it's moving around the body, and I am on weekly injections. Were you not given any idea as to the reason for coming off, apart from like Earthwitch asks, was it working? I would be extremely worried if this happened to me without a full explanation, as no doubt you are.

[Kathyfitz12 in reply to Hidden]

If ianyone is told to come off a drug that they think is helping them they should question this. In UK we are still too reticent in questioning doctors. In USA my doctor would always explain what I was taking -how it worked and if he thought it should be changed he would discuss it with me. I guess the difference is that over there the Doctors have TIME with their patients, I am appalled at how quickly UK Doctors rush you in & out of appointments... it seems as long as they give you a prescription you should be satisfied.

[watson3]

I was given a diagnosis of sero negative RA. 8months down the line told my symptoms more like Psa. Still on methotrexate 20 by injection, also now started. Lefluomide 20mgs.

I would be appalled if my drugs were stopped without a valid reason for stopping them.

Can you not make arrangement to discuss your drugs again with your RA nurse.

Good luck.

Carole

[Ozzy]

I have tried mxt, lefluomide, sulfalasazine and hydro and mxt by injection all failed for one reason or another so then put on humira. For the first 12 months it felt that my life had returnedbto normal, then last Christmas I caught a bug of some kind and it slowly stopped working so well. If your das score goes up or you are not showing enough improvement then you are taken off it. I knew that this was going be a possibility as my fingers are so swollen, but I did not expect to be taken off biologics altogether. I don't think my nurse thinks it will be long before I am trying to get them again, but nice says that you have to fail two dr ads first. The first four were for ra now they think psa so back to square one

[Hidden in reply to Ozzy]

That's daft that is! Not you - them! If you've got psa now you had it back then when you failed mtx, lufluemide etc. but they thought you had ra, that's all! Sure this isn't someone's latest money saving wheeze?

Honest, they can't do this to you. Their logic is up the spout. Your body and your disease whatever it is has filed to respond to the 4 dmards! So you qualify still dfor the biologics.

[earthwitch in reply to Ozzy]

DAS scores are most definitely NOT the appropriate way of monitoring PsA, so its no wonder they didn't show anything proper. There is a different system for monitoing PsA. I think you need to kick up a bit of a stink. If you felt humira was working, then make them reassess you for it from the PsA criteria, and monitor you from the PsA criteria - NOT stop it because you don't meet the RA criteria. That is total madness. You might want to get PALS involved in this. They can be really great to sort out stupid stuff like that.

[Ozzy]

The nurse agreed I think as she has made me an appointment early in six weeks rather than end of April which is what I was given. And yes at the end of the day money matters. Although I still work full time but with my husband so I go in when I can and just work late, as I was not showing enough response to humira it was taken away. She thinks and will add her support to me being put onto rituxmab when I go back unless ciclosporin works. I do not blame my new doctor as I feel that he cares, but I feel that his hands are tied by the hospital and nice guidelines.

[Hidden]

Good to hear this Ozzy, sounds promising. Re the last bit it was their interpretation of the nice guidelines I was questioning. Seeing as it is so common for diagnosis to change I don't believe the nice guidelines say that you have to go back to the beginning with the 2 dmards business just because they think you have a different sort of inflammatory arthritis.

Hope you go on well with the ciclosporin but that the nurses good sense carries the day if it turns out you do need rituxmab.

[Hidden]

I Hope ciclosporin works for you it is potent drug and regular montoring is a must, I am at little concerned about your change in on 3rd dmard and not had the chance if any injectables( biologics) my hospital is cost driven hope it isnt the case for your hospital

[Ozzy in reply to Hidden]

I think mostly all hospitals are now driven by cost, but my local hospitals have been in the news for the losses they are making! As for biologics, when everything else is not working, you try so hard to get them, then at your 6 monthly checkups you pray that they are working enough so that you can keep them. I think the whole system is one big nightmare which none of us needs. Hopefully your 3rd drug will work fine, I think that I am a bit of a problem case as I am sero negative with nothing ever showing in my bloods just fat fingers and a lot of pain, so its taking a long while for diagnosis.

[fastball]

i had blood tests years ago and was told it's not RA. Was left on steroids nothing else, then was told it was Polymyalagia A. Went to see GP as tablets were'nt helping and in a lot of pain. Had a new referral to see a different consultant and she started again,upping my steroid tablets which i wanted to come off as they gave me cushions.Swelling up all over body and round my neck making it hard for me to breath.They then decided that i had Psoriatic arthritis and i went on mtx, staring with a low dose. Now on 20mg a week no steroids. I also have crohns and it can start a flare up. Also have a calcified disc which is bulging and touching the nerves in my spinal space and have steroid injection for this.This alone can put me in a wheel chair and not be able to walk, i can not walk far now and use an electric scooter to do shopping. I haven't heard of most of these tablets you all talk about. Read all the blogs daily, find it all overwhelming. thanx everyone .

[Hidden]

It is overwhelming for all of us and it makes me realise once again how lucky I've been with Methotrexate and Hydroxy keeping my RA so much at bay that apart from some morning stiffness and swollen hands I hardly believe I have this disease any more. However today I was in a shop in the small town where I live buying some gloves. The proprietor and got talking and it turned out that her husband has very bad Psoriasis all over. He has been taking MTX for this for years but then it started taking a toll on his liver (and he was only drinking very occasionally). She said that he had to have a liver biopsy and it was felt by his consultant that he needed biologic drugs now because of the risk to his liver. But our local NHS decided that they were not prepared to foot the bill in this instance so he is still suffering from terrible Psoriasis and still on MTX despite his liver problems. She told me she worries terribly about hm because he really struggles with this disease. This brought home to me how lucky I am because I don't doubt that even if I needed them my local health board might well refuse to pay for them too. It was hard enough persuading my GPs to let me switch to injectable MTX! Tilda x

[Victoria-NRAS Partner Moderator NRAS]

Hi Ozzy

If you're not sure about this diagnosis of PsA perhaps it would be worth getting in touch with one of the PsA charities to talk things through and see what they make of your symptoms and this change in diagnosis?

Here are a couple of links for you:

papaa.org/tiki-custom_home.php

psoriasis-association.org.uk/

Kind regards

Victoria

(NRAS Helpline)

[Ozzy in reply to Victoria-NRAS]

Thanks I have a look at the second one, I noticed that the treatment they list is the same so far as I have for RA right down to the Humira which I have just stopped, so maybe it does not matter to much if its RA or PsA as the treatment looks the same so far. As to my diagnosis I looked at the casper points list and I dont have any psoriasis and never does anyone in my family, but I do have a Negative rheumatoid factor and one damaged knuckle at the top of my finger which as this was the finger which I hurt a long time ago, I thought it was just RA spreading through my finger. But the new drugs I am on at the monment cover both and if they fail the nurse would like me to be put on rituxmab which I have seen lots of comments made about on here. So I am now thinking that I am keeping my options open and maybe oneday they will be able to stop whatever I have from spreading further.