Thanks Anne

I would certainly identify with the drug controlled remission. I have been in remission for a couple of years but have recently had to reduce methotrexate due to raised ALT. I am now experiencing symptoms similar to when I was first diagnosed so have increased the methotrexate again.
Sometimes when you are symptom free you can convince yourself this disease has gone away but it always seems to be lurking in the background.


Sue

hi Anne,

wonder how many people are in complete remission? i am reading into this that they are not on any medication?

i am in clinical remission, which to me is being under control with my meds .. i am presuming that is the same as drug controlled remission, it's just always called clinical remission by my Consultant.

interesting to hear if anyone here is in complete remission then,

that sounds like a wonderful miracle, i. e. gone completely without any help if i am reading this right.

Suzanne

This topic interests me, especially today just after having seen my new and young Rheumatologist.

He was asking me whether I would consider adding in extra drugs to my Hydroxychloroquine regime

to "get me back to feeling as I did 18 years ago before the R.A ever started."

Apart, that is, he said from any tendon or ligament damage that has occurred over the years.

I wondered just how many drugs I would have to take to get any results and how many side effects I could stand

and how would I feel maybe having to be Tea Total as I understand you have to be on some of the drugs.

(I like a glass of red wine or two in the evening and tell myself it is medicinal as their are properties in it that are naturally good

at dampening down the immune system as well as my rather over anxious brain!)

I had not had a Rheumatology appointment for 14 months and I have had no blood tests for getting on for at least 18 months.

I had to almost insist on hand and foot X rays as I had not had these done for about 2 years. They are to check that no

bone erosions are occurring.

The blood tests every 6 months and the X rays every year were standard with my old Rheumatologist to keep an eye on the

disease process.

I understand about the triple therapy for new patients with the goal of halting the disease and a remission occurring as he

explained to me, but I also know this therapy needs to be started within the first few weeks after diagnosis so where does

that leave the older cases of R.A?

To be honest I am feeling a bit worried about what kind of monitoring I will now get.

To see my old Rheumatologist would cost me £200 without bloodwork as he now does a Private clinic.

I would like to know what advice he would give as far as blood testing, X rays etc.

Best wishes,

Fiona

hi Kathleen,

sorry to hear about the Humira not working so well,

can you feel it's not working as it was, as CRP of 4 is by no means high is it .. and mine has been there lots of time's and i am OK, was told not to look at the numbers but by the way i feel.

i have always had montly bloods done, and when i was on Hydroxy i didn't have to have extra eye tests, i got the chart ( name escape's me ) and when i had my yearly eye test the Optician said problems normally occur early if they're going too. i have been off Hydroxy 6 months now, my Rheumy appointment is next Monday.

Suzanne x

Hi Kathleen and Suzanne,

Thank you both for the replies to my post.

I still really wish that my Rheumatologist had done blood tests yesterday.

He did give me the R.A Nurse Helpline number at the Hospital, so maybe I will

get her advice.

When I asked for blood testing he just shook his head.

I wish he had explained why not!

14 months ago I asked for X rays and blood testing and he just said no!

Today I could kick myself for not saying "Exactly why are you not doing the tests I regularly

had before regarding blood tests?"

The thing is he seems to be a very nice man, just not realizing that patients need explanations

for decisions or they worry!

I understand that Hydroxy is considered to be one of the "gentler" treatments for R.A but those

blood tests do at least give a picture of disease activity and how your body is coping with treatment.

With my next appointment being a year away that is a long time to wait.

I have always been seen every 4-6 months by the old Consultant too.

Maybe the Department is overwhelmed with patients.

It was great to know you read my post because sometimes the site seems a lot quieter than

a couple of years ago and that's a shame. Are the others on the Facebook site or something?

Let me know where they post- it must be somewhere because some people were really prolific

if I remember correctly- Blogs and everything!

Best wishes to both of you.

Fiona

There's another forum specific to RA on the Health Unlocked site. You can find the link to it on the NRAS site.

I have tried both that forum and this and my experience is that the advice on this forum is better and the people less 'flakey.' I have deleted my Health Unlocked account because I got flamed over a suggestion I made.

So this site is quieter but more reliable. People here tend to say something when they have something to say whereas on the HU site it's a social free for all which means 50%+ of posts are rubbish. It's too hard sorting the wheat from the chaff

hi Fiona,

a lot of the old regulars have left the forum, some have made a brief return and not posted since.

we are a much smaller ship than when i joined,

i have posted before i think we would have more Members if Health Unlocked wasn't there .. it wasn't an option for me when i first joined.

i like a closed forum and will stick with this one, but it is a shame so many don't post or have left now.

Suzanne x