Hi Tilda,

They might be thinking of referring you for anti tnf. The disease is still active, and as such, you can expect extreme fatigue. My fatigue only subsided with the Humira.

Take it easy, Gina.

Wouldn't my RA have to be much more aggressive and out of control for anti-tnf to be considered Gina? Also I've only tried Sulpha and MTX so far - don't they try all DMARDs first? Guess you are saying if ESR still 36 after this long on MTX then it's not yet under control? But I can do much more than I could and am hoping it maybe will work even better at 15mgs? My GP said sometimes MTX can take 6 months to work properlly but im so impatient to start feeling less tired and get hands moving properly! TTx

Hi Tilda

I think the ESR results take longer to go down than CRP. The normal ranges vary slightly from person to person as well. I should ask your GP if he can chase up your rheumy about increasing your MTX further before you see him to give it as good a chance as possible.

My nurse says that when you have active disease your body constantly thinks it's fighting off something like flu so you're bound to be tired. I went to work for an hour today, I'm exhausted and I didn't even do any work, just chatted!

Mary

Hi Tilda, I'm sure your doctor is right. Most good doctors look at the whole picture rather than a single blood result.

Your body is probably exhausted after a severe flare and remember sometimes if you've had an infection such as a cold or flu it can leave you run down for weeks or months before your body fully recovers. When I've had a bad flare I can be laid up for weeks afterwards, in fact the worst flare was after a car crash, it took me almost 2 yr to fully recover.

I'm a little concerned you don't have your blood checked more often though, my bloods have always been checked between 4 and 8 weeks for all the DMARD's I've been on and if I forget an appointment and fail to attend they're straight on the phone asking me why. It might be an idea to check with your consultant how often you should be having blood tests.

Good luck, hope you feel better soon.
Beth x

Hello Tilda,I'm a bit surprised at your lack of blood tests,when i first went on to
MTX i had tests every week for a 2 months then fortnightly for several months.Now it's monthly and the results are put in my MTX monitoring book whenever i see the RA nurse or dr,if i'm late going for a test they are soon on the
phone or send a letter.They do a whole range of tests inc. liver & kidney function.
I'm on 25mg MTX and my ESR is 9 at the moment,so it's probably early days for you.
Take care B48 :)))
.

Thanks all for your advice and explanations - very helpful. I'm totally wiped out having been to choir tonight and worked for most of the day after early a.m blood tests.

Sorry Beth48 I should have been more clear - I have my blood tested every two weeks for liver function and white blood cells etc but just not for inflammation. It was every week for a while and the practice nurses do that but GPs say 2 weeks until it is settled and then once a month. It's practice policy not to take ESR and CRP or PV unless requested by rheumy I think because some patients get upset or assume they are over the RA if their readings are very low and come off the MTX or get distraught when feeling awful and their CRP or ESR don't match what they are feeling. I can understand this as not everyone is as curious as I am.

I haven't had an ESR reading below 30 yet but I requested one 2 weeks ago having not been tested for almost 4 months and it had gone back up to 40 and today she took one anyway and it was 36 so I guess that's moving in the right direction at least! My rheumy didn't pay much attention to the inflammatory markers either at the last consultation so they maybe don't mean that much at the end of the day and it's all about symptoms. My GP said that she generally goes by when her patients find they can do things previously unable to do such as push the hoover around or chop veg or climb stairs.

But I just feel that they are one small indicator of whether the MTX is working or not maybe - and she did say it should be taken again in 2 weeks to see if going up another tablet has made any difference so i think her curiosity has been roused slightly too? Hands and wrists really sore from holding music book up for over 2 hours tonight - must go to sleep! TTx

Hi Tilda,

I dont know if it is correct to say that RA has to be wildly out of control for anti tnf to be indicated. Certainly, as the NICE guidelines stand that is the way it is prescibed after failing on 3 meds etc...

My understanding is that getting the disease under control ASAP causes least damage. All the studies seem to point at early intervention and agressive treatment equals less joint damage in long term. As we all know the cost of anti tnf is a determining factor either said or unsaid...

I am not a doctor or an expert, but letting the disease progress, as it does rapidly, causing damage to hands, feet, etc, when biologics often work to control RA and slow progression, is obviously a cost issue to cash strapped Health Services. Am I wrong?

Gina.

I think you are right Ginal from everything that I've read or heard. But I do live on an island which is part of Scotland where the local NHS have to pay expensive air fares to get us to the big hospital where I believe anti-tnf is administered. So I think they will try everything they can before I'm offered this - but hoping I'm wrong about . No one has ever suggested that I get flown down to Aberdeen to see the rheumatologist there although I notice that people with other ailments or diseases get sent away for treatment but maybe you have to be really bad to qualify.

I've only ever been sent down twice - once with chronic eczema during my first pregnancy and another time when my middle son was sick at 3 months old. It's horrible having to stay down there away from family and friends but they do send outpatients there for the day all the time and I think anti-tnf is given in this way. Williby said something about it being different in Scotland re anti-tnf so I'm hoping she's right because I don't want to wait until I'm needing surgery for damaged joints to get appropriate medical help! I've just taken 15mgs of MTX and hoping they work really soon because things are starting to get sore again in feet, shoulders, wrists and hands. Not an all out flare but definitely flashes of pain and aching that I'm not impressed by. TTx

I know this s a Kate reply on this thread tilde, but just thinking about something I was reading on RA warrior page n facebook, and it seems if your ESR is still high, sorry but the disease is still active and as such damage being done. I would advise assertiveness on your part.

If you are on fb make friends with RA warrior and review articles on current literature from experts & tube clips from experts. Combination dmards at the very least.

Let me know what you think. I live in Ireland, where healthcare is all about affordability, so I know it's difficult it's your health and you need to arm yourself with as much information as possible, and then see what you think, and influence your treatment plan, as much as possible. It sounds godyou are notn pain, but dare I ask are u n steroids? Because you won't feel the damageubtil you come off, in m opinion.

Regards, Gina.

Thanks for this Gina. I've had another ESR taken since I wrote this and it's come down to 26 now which is the lowest it's been since the RA started and my CRP was only very slightly raised at 13 a month ago. I did try to tackle my GP about this - saying that the disease must still be active if it's still raised but he just shrugged and said that as the ESR is coming down with the raised dose of MTX and as I'm not experiencing much pain then we should assume the MTX is working well on it's own. I said about the combination of therapies and he agreed but said that was the job of the rheumy and if the MTX was working well on it's own it would be foolish to bring in another DMARD yet as additional meds should only be added if needed. He said that if I had seen the rheumy this month as planned he would probably have just left me on the MTX at 15mgs anyway. If the pain increases again and if my ESR goes high again he says he will contact the rheumy or phone him - but only if I'm flaring or in a lot of pain.

Yes I do read RA Warrior's blogs sometimes - she's so empowering isn't she? But am not on Facebook so can only make the odd comment.

It's a frustrating situation being on this island with RA - but as I'm presently applying to get onto the healthboard here I don't want to annoy my GP by pestering him as he sits on it too. I senses he thinks I'm a bit over preoccupied with the RA as things are! I'm not on any steroids or pain meds - steroids make me go a bit bipolar and NSAIDs give me severe fluid retention and I don't feel I need either just now. Thanks. Tilda xx