Where do I go from here??

[beaton]

I have Psoriatic Arthritis. After 3 years at rheumatology I was discharged back to my gp, because I was drug intolerant,that was about two or three years ago. Since then I have only been prescribed ibuprofen. I am still in pain but not much swelling.I happened to see my old rheumatologist last November and after hearing my pain levels he suggested Duloxetine.I duly asked my gp for a prescription which he issued at 30mg.. I was sensitive to this also,I lost a whole weekend with one capsule. I have just returned from my gp,(yes that's how log I had to wait to see him.) All he could offer was a lower dose (20 mg.) of Duloxetine. I know I'm going to have problems with this and although I like my gp I feel I need better treatment. Help please.

[Hidden]

I don't quite understand the situation whereby one gets discharged from the care of a consultant due to drug intolerances. Not saying it's wrong, just that I've never quite understood the thinking behind that given that rheumies have more to offer than simply prescriptions, for example physiotherapy referrals and disease monitoring.

Have you run the whole gamut of available drugs? I realise that NICE criteria make it difficult to access biologic drugs without joint swelling or tenderness and that there are a limited number of DMARDs. Even so, might it be an idea to go back to your old rheumy or seek another one? PsA is such a strange disease, often people don't have much swelling nor do we necessarily have raised ESR or CRP. Some rheumies are definitely better at tackling it than others.

Don't mean to alarm you, but as you probably know, your joints could be getting damaged despite lack of swelling. I reckon you could do with seeking a really good specialist.

[beaton in reply to Hidden]

Hi Postle2,thanks for your reply,yes i'm aware there could be joint damage going unseen by the medical professionals. I would love to go back to the hospital but having mentioned it to my gp today,his opinion (and mine) was that rheumys only want or know how to deal with RA. I did join the local RA group,but there again I didn't fit into there idea of arthritis. In fact I found them less than sympathetic.

I have followed your advice re Cuppa and hope to get some support there.

Thanks again.

[Hidden in reply to beaton]

I know what you and your GP mean about rheumies and RA, but mine is 'PsA savvy' so such creatures do exist. Plus there are some hospitals with specialists who focus on PsA e.g. the Royal National Hospital for Rheumatic Diseases in Bath. I know of several people who have seen a specialist there called Dr Ellie somebody or other (I'll look the name up!) and consider her to be particularly good.

[beaton in reply to Hidden]

Thank you Postle2.xx

[reef in reply to Hidden]

hi postle2, how can joints get damaged without swelling and while they're working fine? do you have any evidence on this?

[Hidden in reply to reef]

reef, have you been diagnosed with PsA? My personal impression is that PsA can be a particularly 'sneaky' disease that can do damage without the process being obvious. (I do realise that for many it's full-on which is even worse.)

To back that up though, I'd recommend a book called 'Psoriatic Arthritis - The Facts' by Dafna Gladman and Vinod Chandran who are doctors from a Toronto Clinic and trailblazers in the field of PsA research.

There's one paragraph I've found which touches on this & I'll message you when and if I can find more evidence-based info.

"Joint damage my be detected clinically, when the physician examines the patients. On the other hand, joint damage may not be apparent clinically, but may be detected radiologically, when X-rays are taken. ......... clinical deformities may not be apparent when only erosions are present without any evidence of joint space narrowing."

Obviously this isn't quite the same as saying "joints getting damaged without swelling and when they're working fine", just that a doctor (and presumably the patient) may not think a joint is damaged but x-rays show otherwise.

I think that is one of Dafna and Gladman's main messages is that active disease puts joints at risk.

For me the most obvious and possibly speediest damage has occurred in joints while they were very swollen and not working fine at all. However I also have a fair bit of damage in my feet which have never been swollen. They also usually work pretty well though they hurt on and off.

I have a high pain threshold though which muddies the water and as Dafna and Gladman point out, PsA does sometimes cause less pain in affected joints than RA does so it can be hard to know what is or isn't going on. (Again, I do know that unfortunately this is not true for all and in fact PsA causes a great deal of pain for many people.)

[minnime63]

Have you tried Naproxen? It really helped me BUT, as with a lot of these meds, you must make sure you eat first! Unfortunately I have to stop taking them now because I'm starting warfarin for newly diagnosed Hughes Syndrome 😵

[beaton in reply to minnime63]

Hi Minnine63,thanks but yes tried Naproxen,sent me into another world. Hope the warfarin works for you.xx

[Hidden]

Hello

i understand your medication problem as I to have the same condition I am intolerant to DMARD medications and have been discharged from the RA Clinic, if you are unable to take the DMARD medications they will not generally prescribe -TNF medications because of cost implications.

However I do not understand why your GP or Specialist has not tried different types of NSID medications as I also have problems with many of them and basically i have to take Cox 2 inhibitors, Celebrex. This medication was prescribed after a tranch of NSID medication types. Generally you will need something that suits you. As sometimes matching medications may take some time.

The same can apply with medications and a possible Antidepressant to suppress nerve pain.

Generally if I was to suggest that you go back to your GP and ask for an appointment with a Pain Clinic and they will give you coping skills for your pain. Again understand I am not a GP so you need to discus this with your Practice. So do not worry that will just upset you more. I am generally in control of both medications and condition although I am chronically disabled now.

BOB

[beaton in reply to Hidden]

Thanks for your reply Bob,I shall take onboard all you have said. Hope life is being kind to you now.xx

[Hidden in reply to beaton]

Hello Beaton

Nice to see you around, life is an interesting employment at this time for us both

Keep Well

BOBx

[beaton in reply to Hidden]

xx

[Hidden]

Hi, You have not mentioned the drugs that you could not tolerate, I ask because I could not tolerate Sulphazaline, interfered with my IBS-d, MTX, put my liver levels too high, and Leflunomide I am able to take, but I was still put on the anti-tif drug Etnercept, (Enbrel). I have been told that there are other ant-tnf if I fail or find it not working as good on Etnercept. this is all since I first started treatment in 2010.

I wonder if you should re-visit the consultants even though you have decided against it. They may have changed since you were there last or there thinking. My thinking it would be worth a try as I can well imagine what you are feeling like at the moment, and I always feel thankful that I have been able to find the right drugs for me to take that incredible all consuming pain away. Otherwise I think I would have chopped off my foot, no exacteration (spelling?), here as it's how I felt at the time.

[beaton in reply to Hidden]

Thanks Georje, a most encouraging reply.

It was not me but my consultant who discharged me ,he had prescribed sulphasalazine and methotrexate, sulphasalazine spaced mr out and Methotrexate caused liver problems. I saw him at a NRAS meeting in November and he recognised me (problem patient.) and recommended Duloxetine,which I have found out is an antidepressant used for nerve damage,not likely to help with pain then. I think I am going to have to see someone as the though of another twenty years of pain and possible damage is unthinkable. Thank you for your recommendations it will give me something to work with.xx

[Hidden in reply to beaton]

Another thing that my team did was to allocate certain marks for where I had active markers, it came to 29 when they did this which was another reason I was put on tnf. With PsA they do marker count your feet, toes, and ankles, along with hands, knees, neck and back, as I believe they don't include feet with RA count, from what I have read on here.

Good Luck and do let us know how you get on. xx

[beaton in reply to Hidden]

Thank you.x

[Hidden]

Hi Beaton. I'm so sorry you are still struggling to get the treatment you need. I just don't understand how a rheumatologist could put someone off their list simply because of lack of swelling and drug intolerances? I'm sure this breaches some NHS guidelines because you have a diagnosis of a rheumatic disease and there are still many treatments you haven't yet tried it seems. It seems like a great admission of failure from the rheumy to my mind?

I know that every time I try and fail to tolerate another drug I get very depressed and blame myself for this even though I know rationally that I can't help it. Only today I've had to concede defeat with Asprin, my GP's latest plan to try and help me with the burning nerve pain and stiffness simultaneously.

So now even Asprin bites the dust for me. I'm still taking Duloxetine - moved down a dose yesterday at GPs instructions to see if it's working or not. I think it does help me a bit in various with the nerve pain a bit and improves my mood. I have no real problems with it apart from the jaw clenching. I wish my rheumy would try me on more immune suppressing drugs because apparently my lumbar puncture of a few weeks ago has shown that I have high levels of immunoglobulin - which are evidence that my neuropathy is immune mediated I was told. But the consultants are still more focussed on treating the symptoms rather than trying to slow down the disease process and this bothers me a lot.

I didn't think swelling counted for as much with PsA I admit. It seems to me as if they are applying the RA criteria for you when it suits them - but the PsA criteria are being ignored despite a diagnosis of this related disease. I don't think you should stay on Duloxetine if it isn't helping. It's trial and error for many of us with pain relief as you know but these are strong drugs and you need to feel reassured that they are worth putting up with the side effects for. There are others from this family but don't be fobbed off if you think they are a red herring for you. Tx

[beaton in reply to Hidden]

Hi Twitchy, I have been following your progress or should that be lack of progress and I am sorry you are still struggling.

I don't think I shall take the Duloxetine,I can't afford to lose another weekend. I have been trying to find out about other meds. which might help so that I could suggest them to my gp,he needs all the help he can get and although I know Duloxetine helps with peripheral nerve problems, I can't see how it can help with Arthritis of any kind.

I am considering asking for another referral to Rheumatology even if I only get information it might be of use.

I must admit that my hospital seems to think there is only one kind of Arthritis,RA,and although I know these people suffer so badly,it doesn't take my pain away. I think it's time to go in all guns blazing. xxx

[Hidden]

I know people with very severe PsA and mild RA (including myself here) so this idea that occasionally seems to prevail, that PsA is somehow a less serious disease, is obviously nonsense. It does seem however that it's harder for rheumy's to diagnose and treat perhaps? - so you should perhaps look for a specialist who has a good reputation with Spondyloarthritis?

Yes it's time for all guns blazing for you - I couldn't agree more. Good luck!

Txxxx

[beaton in reply to Hidden]

xx