What will today bring I wonder....

[Tinat3]

Well, im back to the hospital today for my next appointment. Having had to stop the ssz abruptly due to a severe reaction of sun sensitivity, I am hoping that they will give me a different one to try. I have kept a diary of my symptoms and have logged absolutely everything that I struggle with. Having felt that I wasn't really taken seriously at my last appointment, I have decided that this is my next course of action. Not only will my consultant have to read my log, I will be confident in knowing that I have not forgotten to tell him everything that I feel is relevant when I am being rushed out if the door.

Part of Me feels that this is because although I have the classic symptoms of RA - joint pain, swelling, stiffness, my bloods when taken do not show up any raised makers therefore I can't be that bad in his opinion. Having then been diagnosed with PsA on my second appointment, this is now in dispute after

I received a letter in the post a week later quoting "unlikely diagnosis of Psoriatic Arthritis". So, maybe it's just all in my head and im not really experiencing all of this pain and swelling!

Part of me feels like just giving up, attempt to go back to work and get on with my life but realistically I know that I need the help of the professionals even if it is just to get pain relief rather than answers.

As you can probably surmise, I am feeling very negative atm and yes, feeling a little sorry for myself. I am going to have a bath, pick myself up as I know that there are far worse people with this crappy condition. I have total respect for you all xxx

[farm123]

Hope you get a good appointment. Try and have a few 'bullet points' you consider key to your issues as they possibly will only skim read a diary. Farm

[Hidden]

I've been where you are many times over the past 4 years. I did get diagnosed with RA and my rheumy is standing by it because, luckily for me my inflammatory markers are usually high or raised. However it is judged to be non-erosive and I'm very drug intolerant. The first reaction I had was exactly the same as yours to SSZ. I was put on it by my GP who felt that with a low positive rheumatoid factor and a high ESR and bilateral pain in knees and wrists I should take something serious why I waited to see the rheumy (four months from referral). He didn't warn me that I might get side effects and I'd always tried to avoid drugs until then - so three weeks my fingers were getting fracture pain and I couldn't bend them so he doubled the dose. Immediately my ears and neck became stiff with great swellings and I felt even more unwell. I assumed this was the RA! I was away a few days later and had an extreme reaction to sunlight which meant my entire body responded with a purple itchy rash - even the soles of my feet! He took me straight off it when he saw me and then suggested I re-introduce it once the rash had gone down. I thought about this and said "no thanks!".

Then I had a steroid injection which masked the polyarthritis very well for about 2 months - by which time my first rheumy appointment had been and gone with "observation, watch and wait and see you in four months time". Then it was a diagnosis of seronegative RA with Methotrexate with Hydroxichlorquine. Finally I failed to tolerate either of these and came off 9 months ago. Now I'm just ill and only have a couple of slightly swollen joints and a small fiber neuropathy - but my rheumy at last acknowledges that this is part of my RA. GPs don't though - they just say it's bad luck and tell me lots of their patients have been this ill over the winter. But have they also been diagnosed with RA, tried and failed 3 DMARDs, had the flu and pneumovac injections

I still don't feel taken seriously - now by my GPs who refuse to acknowledge that my present pneumonia and the unwellness I've had all winter is part of my RA/ multi-system autoimmune disorder and just keep plying me with symptom treaters, antidepressants, antibiotics and such like. I'm with you all the way - it's such hard work but you must hang in there and pester and cajole for all you are worth!

Good luck. Tx

[nomoreheels]

Well I would hope it will bring an understanding that something indeed is happening what you're experiencing isn't imaginary. I've had a recent eureka moment with my Rheumy, something I know has been going on for the past 2 years & it's something I'd like to question of you..... do you have any parts of you not examined as part of the DAS 28 that are particularly troublesome..... feet, ankles, back, neck, hips? If I explain, I've had real trouble with my feet yet despite bringing this up at each appointment my Rheumy wouldn't examine them as they're not included in the DAS 28 examination. At my last appointment she did & was shocked at the inflammation & deterioration caused by them not being examined & therefore treated sooner. My inflammation levels don't show this, probably another reason she didn't feel it necessary to check them, yet the damage is plain to see. Now she's trying to prevent further damage, I've had an increase in MTX & referral to Podietry but to some degree it's sticking plaster treatment.

Rather than giving your Rheumy a long list of problems I would do as Farm suggests & bullet point your issues, far better for your Rheumy to work from & you can elaborate as & when he questions you.

I hope it's a more productive appointment & you leave with more answers than questions. Let us know how it went won't you?

[Tinat3]

Well, i have to say after much scepticism; i met first time with the rheumy nurse and felt that i have got further today than i had in two appointments with my consultant.

She was lovely. Took the time to listen to me, i gave her my list which was bulleted

( thanks for that advice Farm123 and nomoreheels) which she read and asked questions about. She did give me a thorough examination all over which i did not receive from my consultant last appt, he only looked at my ankles as i had said that they were still swollen. Going back to your question Farm123, i feel that this was beneficial to my Das and i observed her taking notes although unsure what my score was. She informed me that i had a urine infection and that they would be sending my sample off to the hospital lab. Dont really understand why i could not have had a prescription today but will be contacted by my GP in a few days.

I have now been given 10mg mtx as a starting point and she explained the booklet very carefully to me. I am to continue with the steroids and Naproxen.

She was quite concerned that I have not had chickenpox and has ordered an extra blood test to double check even though my Mum who came with me is still adament that i have not had these. If this is the case, i will require some immunisations against this but will need to stop taking the mtx in between the two courses. She was also concerned about the fact that i am a special needs teaching assistant and germs and illness are part of the course when working with children.

Guess i will just have to worry about that when i am able to return to work.

Blood pressure was high again today 152/121 and this just seems to be since i have started having the symptoms of PsA last year. Before this my blood pressure is usually quite low.

i definately feel more positive today than i did after my last appointment and just hope that i am able to tolerate the mtx with no serious side effects.

Twitchytoes, im so sorry for what you are experiencing, it sounds terrible and i hope that you receive the care, understanding and most of all medication that will sort you out.

Thanks to all for your advice and best wishes x

[nomoreheels in reply to Tinat3]

It's reassuring when you have a positive appointment be it with your Rheumy or your nurse isn't it? It was me you mentioned about your feet ankles, etc not that it matters a jot but pleased he did a fully examination even though it won't count toward your DAS 28 score it's good that it's been noted that you have activity there.

The reason you didn't come away with your meds is probably because your Practice has signed a shared care agreement with your Rheumy department, this means that any blood testing & your repeats scripts will be done & collected from your Practice, your GP's will be aware of any changes in results & changes in medication.

With working with children it's most important that you're protected against any of the childhood diseases & it's possible you had chickenpox without even knowing it hence the need to check, this link explains why nhs.uk/Conditions/vaccinati....

I hope you react well to MTX, it's been the med that's helped me the most. It probably says in the leaflet your nurse gave you but it doesn't harm to mention that you won't react straight away, it'll be a slow build up but you should notice subtle differences the nearer toward to the magic 12 weeks you get. Any problems or uncertancies just pop on here, we should be able to reassure you or give our experiences. It's not as scary as it may appear when you start, everything has to be covered in any pamphlet or instruction leaflet & it's not a given you'll have any side effects but most are easily sorted if you do.

Good luck! x

[Azabat]

Another case of a doctor needing slapping. Desperately. I'm so glad you've been keeping a log, I think I need to start doing the same. Otherwise I tend to forget the really crappy days if I happen to be having a better one. This isn't in your imagination, it's in your body and it's rotten to not be heard. You are the expert in your own symptoms, and your care team needs to respect that. Enjoy your bath, and take a hug with you. xx

-Bat

[Hidden]

Here I am chiming in again that log is so important for you to look at even a year or two from now. Everyone should have one that includes level of physical activity including

all household chores and work and anytime you are moving about.. be honest about it..

if you sat like a lump on a log like all of us do some days - just report it on your diary...

Include pain levels on that pain scale.. maybe you felt pain like crazy when you were doing regular household chores but felt okay at work while you were sitting down at the computer. You may have to specify that one so the doctor knows..

Include any pain relieving strategies that you tried like Tens machine, pain pen, back rollers, exercise, meditation, pain relievers, menthol rubs or massage with oils, stretches, distraction, whatever you tried to lessen the pain.. and the pain number after..

It will help you and the doctor - you can write very short sentences or detailed and long.

The doctor doesn't have super long so highlight phrases or numbers that you want the doctor to see at a glance. Graph the numbers for pain if possible.

Have your list of 3 most important things to cover on your appointment .