Am I going mad?

[Caza]

Since I've had this awful disease, I've never so much as had a sniffle. I've looked after my family through swine flu,heavy colds,many sickness bugs & this awful cough that seems to of been around for ever this winter. Am I right in thinking that my immune system is in overdrive & is stopping me from getting these nasty bugs or am I just putting 2 n 2 together & getting 500!!! I guess I'm worried that the meds I've been given are not strong enough. I only take hydroxy,the thought of taking stronger meds scare me but worried that damage is being done to my joints by not taking the right meds. I think this might come across as rambling,you might well decide yep she's mad!!

[Hidden]

You're not mad! Well, you might be of course but there's absolutely no sign of madness in this post! You are not the first person to comment on their apparent immunity to colds etc. on here - there was quite a discussion about it a while back. I think your arithmetic is fine too - it is reasonable to assume that an overactive immune system will have some advantages.

I too feel I can't win sometimes - I don't get colds and wounds still heal quickly usually .... so I end up thinking that perhaps the meds aren't slowing my immune system down. But recently I had annoyingly persistent mouth ulcers and a cut on my thumb just wouldn't heal & I assumed it was the unpleasant trade off for meds kicking in.

I was worried about what was happening to the joints in my hands and feet & a bit of persistence paid off - I did get x-rays. (But a month later am still waiting for the results.) I do think there is a problems with imaging & RA, I just can't understand why Rheumys don't ask for more x-rays, scans etc. I think your concern about joint damage is absolutely 100% justified seeing as you have a disease that attacks joints and I think you should work on your Rheumy to explain more or reassure you or get some images done. But of course lots of people do not get significant joint damage so hopefully he or she will be able to put your mind at rest.

Concerns about the drugs are legitimate too - again, exactly the sort of thing your Rheumy should be addressing.

Luce x

[Caza]

Thanks for your reply Luce, I have had X-rays & scans a yr ago,they showed slight damage to my fingers & toes. They are beginning to change shape.

I guess it makes it more difficult for the consultant because my blood tests are inconclusive.

I did ask him,when I saw him last,in march, if my lack of colds etc had anything to do with the disease,& he laughed & said no I was just very healthy & must be doing something right. I just don't buy it. so thought I'd ask the experts. The good folk on here seem to know far more & don't make you feel stupid. X

[Hidden in reply to Caza]

Just wondering what you mean by inconclusive blood tests ...... (just being nosey!)

[Caza in reply to Hidden]

Ok third time lucky,trouble with the Internet. Lost both long replies, so your lucky day,much shorter version!

The symptoms & scans show RA but the blood tests were inconclusive, I'm not sure what that means,he did quote facts n figures to me but I didn't have a clue what he was talking about. He is treating me for RA & has told my GP that is what I have & indeed the hydroxy is working & has taken away most of the symptoms. My worry is my fingers & toes are changing shape & with the lack of colds etc... I'm thinking the immune system could still be in overdrive & wonder if the meds are strong enough. Thinking long term,am I doing enough to get the treatment I need. You wish you hadn't asked now!!! X

[Hidden in reply to Caza]

Thing is lots of us on here have sero-negative RA.

There are 2 or 3 things that suggest sero-positive RA if they are in the blood: Rheumatoid Factor and something called anti-ccp plus ANA I think. Even those don't lead to a conclusive diagnosis on their own though because healthy people can have them too.

But if you don't have them but have other symptoms they call it sero-negative RA.

One other thing that shows up in blood tests is inflammation measured by ESR or CRP. It has nothing to do with sero-pos or sero-neg but does back up a general RA diagnosis. Some people have high levels & some don't. I think inflammation is a good measure of how controlled your disease is or isn't.

I had high inflammation when I was diagnosed but no RF or anti-ccp or ANA so my diagnosis is sero-negative. The reason I'm banging on about all this (which you probably know already) is because 'inconclusive' suggests your Rheumy is in the dark which might be worrying for you and this isn't necessarily so. You might just be sero-neg.

Luce x

[Caza in reply to Hidden]

Thanks Luce, I have copies of the results of the tons of blood tests I've had,I'll get them out & see if I can make any sense of them. I've learnt a bit about sero-negitive on here but never really understood what it meant. My consultant wanted me to have a blood test when in a flare but that's easier said than done,maybe that would sure up more markers. X

[Dotty7]

I always assume that my immune system knocks out the germs before they get a grip, especially as if my daughter gets a cold I get horribly tired and often some joints will ache. It makes sense to me.

Dotty xx

[Caza]

I'll look out for that,I do get really really tired & my joints are worse at that time, I put that down to being part n parcel of this disease. Food for thought,I'll look out for that but does that mean that the meds are not doing there job? x

[Hidden in reply to Caza]

PS it may be part and parcel of this disease but that's what we take DMARDs for - to try and modify the disease enough to avoid damage. Active RA or drugs - it depends how you want to feel in ten years time really. Personally I think RA is more scary than MTX or others but I've just conducted my own personal experiment to prove this to my rather sceptical and wimpish brain!

[Hidden]

You are absolutely not going mad and I often wonder exactly the same thing. I did ask my GP about a year ago - why I never get bugs even when I'm lying next to my husband who is full to the gunnels with some lurgie or mopping up after boys with heavy colds (they leave their used paper hankies everywhere!). He said same thing as you rheumy - no it's just good luck etc. I don't buy this at all. When I moved up a dose of MTX last summer I suddenly caught a sick bug and two heavy colds all back to back but my RA seemed to go totally quiet at last. I told the rheumy this and he did agree it was a delicate balance. My GP insists that if I have lots of infected cuts and bugs it can't be because of my reduced immunity because it's not showing in my white or red blood cells. I'm no believer in coincidence really so I think the fact that so many of us experience this on here must mean there's something to it - it just makes so much sense re a hyperactive immune system doesn't it?

Not sure what to advise with Hydroxy versus something a bit more hard core but as one who recently went through a major drug panic I can tell you that a whole month off was enough to let me know that I need the MTX injections and won't be messing about again for a long time now. My X-rays were clear but my hands still don't fully clench and my knuckles are swollen without fail every morning so I've decided that it's best not to wait around until something makes itself visible to a radiologist - by then it will be too late to do anything about and my hands are a large part of my life. Tilda x

[Caza in reply to Hidden]

Thanks for replying Tilda,have had trouble with the Internet today. Pleased your back on track with your meds. At least you now know you most defiantly need them. X

[Hidden]

your not mad.. super immune sytem in over drive causes auto immune dieases like RA

[Caza]

Testing

[mille]

Hi, I agree that it has to do with an over active immune system as i haven't had a cold since i got r/a 12 years ago. I think if your joints are starting to get sore then it's time you got something other than hydroycholooquine as it is quite a mild drug. I have been on it for almst 7 years but i have a load of other drugs i now take. x

[Caza]

Hi Mille,thanks for the reply. I have taken other meds NSAIDs but I was sick,that I stopped taking them,although they really helped with the pain. I'm just a bit worried about my hands & feet changing shape & concerned that maybe I'm not doing enough about it. But I no I'm nowhere near as bad as many folk on here so maybe I should just wait n see. X

[mille]

Hi Caza,

Don't wait until you have joint damage before you take something else. If you are noticing changes then i think you should ask about something else, there are many new drugs or mtx by injection seems to avoid the sickness etc with most people, especially if you take folic acid with it. It's not worth getting deformed joints if you don't have to.

Take care x

[Caza]

Thanks Mille I think your right,I have an appointment next October, I'll ask more questions then. It's just in the waiting room I see many people way worse than me so I feel like I'm wasting the consultants time,so I go in & say ' I'm fine'. I need to think about the future I guess, I'm 58 so still have a good few yrs in me yet!! X