Has anyone else been told that they're "not sick enough"?

[emandedmum]

Firstly, thank you to all who replied to my last question, your feedback was very, very helpful.

I met with my consultant last week and she was the one that suggested Biologics could be the next step. However, having examined my joints and listened to my gripes she has decided that at the moment I'm not "sick enough" to warrant trying them.

In a way I'm quite pleased I'm not THAT poorly (in her eyes) but now I'm stuck where I am. Again.

At the moment my diagnosis is Acute Inflammatory Poly-Arthritis but she is going to try and re-diagnose me in an attempt to fit my sore joints (wrong ones for RA but right one for psoriatic arthritis) so that the criteria goes down from 3 sore joints to 2 sore joints and then maybe I can try Biologics...? My CCP test is negative but I don't have any other symptoms of psoriatic arthritis so I'm not sure what this means for me now. In the meantime I'm to try an increase to 15mg MTX to see if I can tolerate it and see an improvement in my symptoms.

Back to see my RA Nurse in June for follow up so they might have a few more answers then...or I might have a few more sore joints.

[Hidden]

Yes I think I'm in quite a similar boat probably. I'm definitely not sick enough while I'm on MTX to qualify for Biologics. But MTX and other stuff is making sick so its a vicious circle!

I've tried Sulpha but I had a severe reaction to it so can't take it again and tried Hydroxy too but it appeared to do nothing but make me more nauseous.

I have a "working diagnosis of RA" because the relevant joints were affected most but I have a negative anti CCP too. I have no psoriasis but my skin has always been affected by chronic eczema and I wouldn't be surprised if this turned out to be PsA. I think my GP and consultant half expect it to as well.

Although when I spoke to someone on the NRAS helpline she explained that 40% of people with RA have a negative anti-CCP so that may well not be as relevant as which of your joints are affected. It may well be different in your area but I think many consultants are very reluctant to diagnose PsA unless you have psoriasis - even the tiniest patch or yellow, pitted nails, but as I really don't want this to be PsA I'm relieved even if I never meet the RA DAS criteria for Biologics. Good luck with the 15mg MTX. Just a suggestion but you may find taking it by injection helps your IA and helps you avoid the side effects too. I was told by a consultant that 15mg injectable MTX = 25mg oral in effectiveness. Tilda x

[emandedmum in reply to Hidden]

She inspected me everywhere for the slightest sign of PsA, behind my ears, in my hair, nails and so on, I mentioned I do suffer extremely sore, dry patches on my hands but she said that wasn't Psoriosis. The joints that are sore at the moment are my feet and shoulders which they discount for RA but not for PsA apparently - I've not heard mention of this before so was confused! I have been on injections for years now, have recently dropped down from 20mg injection to 10mg as nausea so, so terrible. The 10mg is not controlling RA well enough so will try 15mg and see how I get on. Tried every other dmard without success, I wish just MTX wouldn't make us feel so rubbishy x

[Hidden in reply to emandedmum]

Hello there,

the DAS score (used to assess how bad RA is / eligibility for Biologics for RA patients) does not take account of the feet despite the fact that RA very often affects the feet. If you can find an article on the DAS score it will probably be accompanied by a digram of the joints it does take into account. I always think it looks very ridiculous - outline of a figure with enormous hands so that all the little hand & finger joints can be counted, but the feet, although they are shown, are not similarly enlarged.

I'm not sure about shoulders but I thought they were included in DAS if swollen or tender. And they certainly do seem to be affected by RA.

Incidentally my diagnosis of RA is wobbly too & my Consultant has hinted that he will use his clinical judgement to decide if I need Biologics, not criteria linked specifically to RA. But I suppose that would mean he'd need to pin a different diagnosis on me in order to get approval & funding ..... xx

[Hidden in reply to emandedmum]

I am so much the same as you. Some of my worst pre diagnosis pain has been in my shoulders and feet too off an on. I don't think they mean you can't have RA in your shoulders or feet - they mean these aren't counted with the DAS for RA whereas they are for PsA. I have a love hate with MTX. It works for me very well but I just feel terrible on it for much of the time. I'm now in 15mg but I think its probably too low for me too and the stiffness and pain will slowly return. 17.5 was good for the joints but no way I could stick the dose. I still feel sick in the lower dose now and have the usual big itchy blister but not as sick and the blister is smaller!! Good luck on 15mg! X

[Hidden]

Really sorry to hear this

Was you told your DAS score?

Because its your DAS score that rules the nice guidelines for the biologic drugs. And unfortunately your rheumatologist has no say on changing the rules if your DAS score isn't high enough

Really hope you can get somewhere with your next appointment xx

Take care

[emandedmum in reply to Hidden]

I wasn't asked about my DAS score or told what it was if she did it without my knowledge! I shall mention it to the Nurse in June and see what she says...Consultant didn't seem to be convinced that she could alter diagnosis but hoped I felt worse next time I'm seen! I don't really want that so hoping 15mg MTX works for now and doesn't make me feel too sick. x

[Hidden]

Yes ask your DAS score its an Important part off your illness to know and monitor it and really your consultant should tell you it and get you involved with your care etc, good luck for June x

[Hidden]

I've never been told mine either - I think it only becomes relevant when biologics are on the cards but I assume being told you aren't sick enough to qualify is the sane as being told your DAS is too low. X

[Hidden]

The scoring if you have PsA is 29 and above whereas I believe for RA the DAS is score is 5 and above. When your consultant looked in your head and behind your ears it was not for PsA but Psoriasis. Pitting of the nails is a sign for PsA.

[Hidden]

emandemum .. sounds like your consultant in their way is trying to help, I PASSED two das scores but rather than try assign a disease title able to fit eligiblity,, currrently inflammatory arthritis and fibro mylagia( im sero negative) she is eying up new and inegible diagnosis such as connective tissue disrder ie lupus?? and this is now after three years!!, confidence???!!! i am not happy told Gp,, see what she comes up with june3rd if any thing!!

[oldtimer]

I'm not "sick" enough either - my ESR and CRP are controlled on steroids, I'm sero-negative for RA factor and CCP negative.

I'm now on the "last chance" azothiaprine, having been on every other DMARD, I've had severe allergic reactions to most of them, or have been unable to tolerate them, which sounds really wimpish. (BUt having enormous ulcers in the mouth and being sick every day is as bad as the pain and swollen joints.)

But I've just had another bad flare and am currently tailing down the steroids gradually with a struggle again.

It seems that I'm stuck with being treated with steroids basically! And developing more and more OA as a result of the damage to the joints.

I suppose the only option would be to refuse to take the steroids and suffer for months, but I really can't face that.

[CLANCASTER]

This is really depressing reading. I too am not considered bad enough for further treatment than MTX until I fail on other dmards. Projectile vomiting and explosive diarrhoea on hydroxy apparently do not count as a fail. I have been diagnosed as psoriasis arthritis with normal esr and crp...I have no idea of my das score. maybe ask the consultant or nurse how they would feel if it were them in pain with constant fatigue and trying to lead a normal life?

[Hidden in reply to CLANCASTER]

With PsA they don't use DAS score is called by another name you have to hit 29 or above for that. However they score you against where you are hurting, next time you see the consultant or nurse make sure you list everywhere the pain is on your body and if it appears on both sides then let them know. They should then score at each point of your body that is hurting, then add the scores up. 29 and above will mean you are at the target for ant-tnf's but you have had to fail on three dmards.

Like you I could not stomach Sulphazine, when I took it alongside MTX, so this was one that I failed on then I went on to MTX with Leflunomide, after several months on this and the bloods came not good, taken off all medication for a while, then returned with Leflunomide, I was then put forward for ant-tnf. Which I now take alongside Lefl still.

I hope this helps you a bit, you can pm me if you would like any further help or experience with PsA, that I have had so far.

[cathie]

I'm not impressed by DAS. Its very subjective and you need to be clear what they're measuring. How can you measure pain?

[cathie]

I'm not impressed by DAS. Its very subjective and you need to be clear what they're measuring. How can you measure pain?