Advice please Das score and moving on?

[sparker]

Hi I am at my wits end. I was diagnosed in 2009 and I have tried various meds such as Methatrixate and hydrochloride and am currently on sulphasalazine.

In my opinion it is not working and I am constantly in pain and suffer from chronic fatigue. My GP recently brough my consultant appointment forward and I saw a locum who was fab! She really listened and did my DAS. She then said that I needed to move on to a different type of treatment called humera. She did loads of tests and said that I would need to see my consultant in 1 month time and start treatment.

I waited patiently and was eventually sent an appointment for 2 months time.. Saw him (my usual consultant) this week and now he said that I did no need new treatment as I have not got inflamation, I may have sensitive joints???

I am in constant pain. I can't plan a week ahead as I can wake up and not be able to get out of be some days! I am on antidepressants and to be honest just feel like giving up. I have a wonderful husband and a beautiful daughter who wants her old mummy back...

I was reviewd by the job centre and even though the person who reviewd me put in the report that in his,opinion I would not be fit for work for at 2-3 years I was put in a can work with support group!! The only positive was the lady I saw at the job centre was really nice and does not want to see me again for 6 months. She in fact said that I should appeal?? I have not got the energy.

Sorry to be so moany but I am not sure what to do next. Any advice would be really appreciated.

Steph

[Hidden]

As so often it's probably impossible for you to put all the detail of your story in a blog so lots of questions come to mind. First, I can't work out how they suddenly tell you that you have no inflammation. Have you had any blood tests recently which would confirm or contradict that or was the rheumy just deciding that from seeing your joints? If your ESR or CRP are high then obviously you do have inflammation. Also, I know from reading here that plenty of people are considered to have inflammatory arthritis even though inflammation does not show up as hight ESR or CRP or even as hot & swollen joints.

Seems your rheumy is basically saying that the sufla is working because of lack of inflammation. But what makes him so sure about that specific thing? He could be right, but as you are in pain you'd want to be doubly sure before accepting his view.

Sensitive joints? That's a new one. All I can think is that you need to challenge this. Do you have a sympathetic and helpful gp who you can take all this to? With the pain you are experiencing then either your RA is not under control & the consultant is wrong or it is under control but something else is wrong. If there is such a thing as 'sensitive joint's' then that in itself sounds like a real health problem that needs to be taken seriously.

It's so terribly hard to challenge these things when energy is in short supply but I can't see what choice you've got. Your gp, a rheumy nurse, the rheumy himself - I thinnk you are going to have to get back to one of these and explain that you need further help. It is your right.

[sparker]

Hi you are so right, he had bloods from 2 months ago and said they,we're fine ( took some more) he looked at the X-ray taken 2 months before and said they were fine, he also did an ultrasound on the day and said that despite my hand being swollen there was no inflammation?

I have constant pain in my hands, stiffness in my feet, knees, hips and pain in both of my shoulders. I struggle most days with exhaustion. I really just feel like giving up. I probably would have if it wasn't for my husband who is fab and my daughter.

Even though I am on antidepressants I still feel low and cry, I suppose I feel,that my consultant just doesn't care and would prefer it if I would just shut up.

Thank you so much for your comments it does help,to,get another perspective, I can talk to mu husband but sometimes I just don't want to burden him. Thanks again.

Steph

[sparkymac in reply to sparker]

My wife complained a few years ago to her oncologist about chronic fatigue. he sent her for tests and the results showed she had lupus. All part of the same set of deseases as RA. Offered her MTX but as she has very deep veins and blood tests are a nightmare she declined. Has lived with it for years. When it flares up, we just cope, but her's isnt as bad as you seem to be. But if your doc isnt too knowledgeable or sympathetic, you need a 2nd opinion. Never heard of sensitive joints. Guess its a fall back name for 'not sure what it is'. Good luck though. Hope you get the answer you want.

[Hidden]

Poor you Steph. I think the only thing you can do is go back to your GP and tell him or her how you are feeling and ask how a locum can tell you one thing and then your consultant contradict this analysis completely. It's good that the x-rays are fine but that doesn't solve the pain or the swelling in your hands so I think you need to ask your GP to refer you for a second opinion and an explanation to go with it. Strangely I've been told in the past that it's not important that my ESR and CRP (inflammatory markers) are high - it's how much pain and visible inflammation I have that count. Sometimes they seem to make it up as they go along? I really hope you can get some help soon as it sounds to me as if either the Sulpha is not enough or you might have other forms of arthritis going on there perhaps. Don't worry about moaning - pain is exhausting we all know that. Tilda xx

[helixhelix]

This all sourds quite stressful, so feel for you. If you're in England the the guidelines are quite strict about being put onto things like Humira, as this is a biologic drug and only given if you have a DAS score above 5.2 on two separate occasions at least 6 weeks apart. And it does sound as if the consultant did look at you properly if he/she did bloods and ultrasound etc. So I'm also thinking along the lines of Tilda as to whether you have another form of arthritis (you can have more than one sadly!) or fibromyalgia. But you do need and deserve a better explanation than "sensitive joints" which is just a rubbish answer! In your position, I'd go back to GP and ask for another opinion.. Don't be put off by fears of being seen to be many, it's your body after all so you know it better than anyone else! Good luck, Polly

[sparker]

Hi Thank you so much for your kind words. Feeling a lot better now I at least know that I am not mad! I wish that the consultants thought a bit more about how their words make us feel and not just the medications!

I am definitely going to go,and see my GP, I am lucky she is great and ask for a second opinion.

Again thank you again you help has made me feel loads better.

Steph x

[nottsexsportfanatic]

I feel I'm still pretty new to all this as diagnosed within 2 weeks of onset and that was less than a year ago. But it seems we have a constant battle to prove that we are not 'ok' or "normal" now. At my last appointment was nurse gave me a das score of over 5 and said she thought I needed to add sulfasalazine to my 25mg sub cut mtx. But then this consultant (not mine) came in and said he disagreed with her. Felt she was just heavy handed when examining me.

I found myself unable to walk yesterday due to severity of pain in my hip/groin yesterday and so I rang help line. As I'm due to have ultrasound of my joints on 28 to decide if I can start salsa too, they won't let me take anything else short term to help me out over Xmas. It just seems such a battlefield that we constantly find ourselves in.

Hope u get some answers that work for u soon.

Hope everyone manages some pain relief over this festive period so we can enter the new year in fighting spirit.

Cyber hugs

Tina