?PsA ?? RhA ...but treatment!

[mirren]

First appt at rhem and i was a nervous wreck...Very good consultation, interested in my first episode of knee and hand pain in 2003 when my ESR was a bit up, and low wcc and cardiolipin ab pos. Was surprised I never saw rheum then, but saw immunology. Interested in my chest 'rash' and rosy cheeks - I told him it was just sunburn :). Had hands scanned and lots of inflammation wrists and finger knuckles (though I have more swelling and pain in base of finger knuckles)

He is leaning towards PsA (neg bloods) though I don't have psoriasis my mum had PsA (thanks mum!). Ruling out lupus again and RhA as all bilateral and speed of onset, and pericarditis in January. I had a steroid injection, hands feet and chest xray and start methotrexate in 2 weeks after vaccines.I forgot to tell him about my new neck and back pain but as he's leaning towards PsA that fits anyway.

I could have kissed him even though I know its crap the worst thing would be getting told there was nothing wrong and I was a fruit loop

If its PsA should I have neck and back and hip xray?? They are my new moans....

[hatshepsut]

So pleased that you had a good consultation. It's never good news to be diagnosed with a chronic condition, but as you say, far worse to be sent away without any treatment.

I hope the MTX helps, don't forget that it can take 12 weeks to kick in, so don't expect immediate results.

Good luck,

M xx

[Livingston]

So glad it went well for you. Not great to have a chronic disease, but soooooo much better to be listened to & believed.

Good luck with MTX.

[mirren]

Thanks guys, i think believing myself is part of it, because i am a nurse i am well aware that my imagination could have been running riot (and that the doctors might have thought it!), now i know i was/am genuinely ill, i might begin to forgive myself for being so tired, dropping things, making mistakes.

i thought i was good to my mum but i had no concept of how bad she must have felt a lot of the time - and i don't have the added pain and discomfort of the psoriasis (yet!)

[Hidden]

Hi there, so glad you had a good appointment. It leads to some interesting emotional swings doesn't it? A sense of elation after being diagnosed with a chronic disease for example! But of course that is completely understandable as being in medical limbo land is even worse.

I have PsA. I've always had trouble getting anything x-rayed and I suspect many rheumys are reluctant to order x-rays unless they serve a diagnostic purpose. However your rheumy could be different and spinal and neck involvement might just be deemed particularly important. I reckon you should get a message to him about the hip, back and neck pain. I'm sure they realise that first appointments are quite tense.

[helixhelix]

I echo that roller coaster of finally getting some form of diagnosis. Do try to look after yourself as you might find the low point hitting you when you least expect it over the next few weeks. Yes, great to know what "it" is, I'm not sure I wanted to kiss my consultant but hugging her certainly crossed my mind. However, it's also a bit of a challenge to come to terms with "it", so don't try to be superwoman - or at least not until the MTX has kicked in.

[Katheryn13]

I have PSA and my psoriasis went from clearing uo (when i first took MTX) to coming back (when i stopped taking it due to side effects) and boy, I was just getting used to it getting better! Anyway, be grateful you don't have the added skin problem to deal with. The aches and pains are bad enough. I can't remember if I had a back and neck scan, but I do get twinges there. I remember having a full body scan but that was for my bone density and since I have so many problems with me, I never know what scan is for what. sigh. I hope you get sorted with the right treatment soon enough.

[mirren in reply to Katheryn13]

By all accounts the psoriasis will come, I have just had the more unusual presentation (20% I think) of Arthritis before psoriasis. I am well aware of what that means, my mum had terrible psoriasis for years before the Arthritis, she had a lot of hospital admissions for her skin and unfortunately because she had asthma and emphysema couldn't tolerate a lot of the dmards. She was only 66 when she died, so I don't think I am getting off light, just brewing. The only consolation I have is that I am in a big city centre with great rheumatology team and I don't have any other medical problems to get in the way.

[carotopgal]

So glad that your appointment went well! Why is it that we feel that our obvious symptoms will be perceived as "all in our heads"? I'm the same way and I find it strange that we should even think that! You don't find most men thinking that way. Has society made us this way? We hurt, we have symptoms, we want to be listened to, and respected. And that is what we all deserve! I'm so glad that you had a caring consultant that actually saw you as a real person, with real problems, and he came up with real solutions/answers.

[mirren]

I think it was the wandering aspect of the pain that made me doubt myself, and the fact my GP was getting sick of the sight of me and one even shouted at me! ( I doubted myself but not enough to stop going )

I think I am going to go back to the one who shouted at me to ask for my vaccines and have a quiet word with her about how it made me feel and how much pain I was in now I have my diagnosis. Today I am having a terrible time with my neck, it feels like someone is sitting on the back of it and I cannot wait to my steroids kick in, I am really excited and looking forward to walking my poor old dog properly

[Hidden]

Hi Mirren, what positive news - daft as that sounds! I completely get the fruit bat thing and I think you should see the GP who made you feel crap about yourself and have the quiet but firm word. I did same with the ward sister who phoned me yesterday to learn what I had to say in confidence about several of her nursing staff. You are at least very fortunate in having a great rheumy team and hopefully the mtx will work brilliantly for you.

Sorry I've come late to this. I've not been around much because my gallbladder op led to an abscess forming in the main wound. Seems they rushed me through late in the day without doing enough homework - very large gallstone and GB tucked in against my liver so they should have gone for full abdominal rather than laperoscopy the surgeon later admitted to us.

So I was put back into hospital for four nights with sepsis (second this year) and had other foul infections including a giant mouth ulcer. And then after IV antibiotics all veins on strike with the cannulas so both arms covered in phlebitis. Got self discharged on Wednesday with Flucoxiccilin and Metronidazine and have now got district nurse coming daily to drain and dress the deep hole in my naval with sorbsan etc. They say it's now infection free at last so just got to heal over the next few weeks hopefully. To me it looks and feels gross but I'm very squeanish!

I will use you as my role model re because I think I have a primary immune deficiency that I've had all my life at a low level - but is now ramping up to a higher notch this year as this is my 7th lot of antibiotics. I'm also staving off a peptic ulcer (black poo and awful heartburn) so living for my omaperazole and sipping Gaviscon like it's going out of business!

I know my GP and rheumy will just roll their eyes and brush off as coincidence and make me feel foolish when I push for them to refer me to an immunologist now but I don't care - I've had enough. My GP failed to look under the dressing a few days after the op and is implying this was a hospital born thing - while apologising a lot for being remiss. I don't buy any of this as coincidence though!

So thanks for inspiring me to get back on track with pushing for answers. Best of luck with your PsA being halted in its tracks now. Xx

[mirren]

I feel able to assert myself as I have some empathy for them too, I understand why they sometimes make mistakes or don't think things through. When I have to fight a patients corner at work sometimes I ask the doctor to put themselves in the patients shoes - what would they want? And if they are making a rash decision I don't think is right I will ask them 'what if you are wrong? Shouldn't we cover all bases?' It gets them to come back to the human aspect away from the science aspect and I am going to apply it to my own care, keep reminding them I am a person with a career to protect a relationship to save, and its a good and positive thing I am being proactive in my care and not a nuisance, I could save them a lot of work down the line!

Absolutely ask to see an immunologist, they will be very interested. If the immunologist is in a different trust, ask to see your records before - you want to know all your baseline results any previous clues like pretreatment low wcc, esrs, cardiolipin ab, viral titres, you may not have been told slightly abnormal results as they didn't seem relevant at the time, and they may not go over in a hurried referral letter. The sooner patients are allowed to carry their own records the better, I really believe it would!d help doctors, a knowledgeable patient can cut their work. The doctor I saw on Friday was a little disconcerted I was a specialist nurse who understood everything he said, but it really helped him that I knew my history inside out, why he was asking about the sun and my eyes etc, the consultation was efficient

I wish I lived nearer you I would come with you and help pull it all together and not let anyone make you feel bad about trying to improve your quality of life.

If I were you, any sign of resistance, just ask him to stop for a second, and say something like:

look at me, and what I have been through these past few months and years. If there is any way to improve my health I want to find it, and if you were me you would too'

Keep me informed!! Xxx

[lainee]

Hi so pleased you had a consultant you could talk to and who listened to you. I understand totally the elation you feel when you start to get things moving and start on proper treatment. Sounds as if you were thoroughly looked after on first visit so hopefully this will be a very good indication of how your treatment will be from here on in. Sorry though that you have to live with one of the conditions xxx