Confused now!!

keith1971

Hi all,

Just got back from my 2nd appointment with my new rheumatologist to discuss my xrays & blood tests results.

I'm not sure exactly what the technical term for these things are but he said my inflammation level was 13 & that the tests also showed some rheumatoid level (not sure what) of 22, the normal being around 15. Xrays also showed some degeneration in my big toe of all places.

He seemed pretty pleased with everything & said right now he'd class me as a mild case but couldn't say how long I'd stay this way & things may be different 12 months down the line.

It's the rheumatoid thing that's thrown me the most, not sure why.

:roll:

keith1971

Hey,

I guess I should've asked for a copy of the results so I could try & understand them a bit better (meaning Google them & then panic!).

With regards to the rheumatoid thingy he said it didn't really matter as the treatments/drugs for PsA & RA are exactly the same. It's just all really confusing to me trying to understand what I'm afflicted with!



Big toe was a surprise as it's my ankle that causes me more pain at the moment.....but hey, better my big toe than my knee or my hip, right?

I have another blood test & appointment with him in the middle of next month, so we'll see if anything's changed.

As for the sulfa, nothing at all to report right now. I up my dose to two tabs a day tomorrow, then 3 the following week & finally four. My fingers are crossed that it works well for me & I can avoid meth for as long as possible.

xx

barbara12

Hi Keith
Sorry I cant help, all I know is in the past I have had raised levels of something or other pointing to RA, but the consultants say OA, they get your head spinning sometimes.
I hope it all goes well for you
Good Luck
Barbara x

dreamdaisy

If you have a positive RF then that would indicate RA rather than PA (I think PA does not show a positive RF) but you have some form on inflammatory arthritis, so that is at least understood. It does matter which joints are affected: all joints are important and useful and problems with a big toe joint can lead to trouble with walking. You, however, are in the very early stages of this malarkey so no need to panic yet. I can understand your concerns about meth but it is a very effective treatment in terms of relieving symptoms and slowing joint damage: surely that should be the uppermost thought in your mind. Don't end up like me if you can possibly avoid it. DD

keith1971

DD,

I was only making light of the situation re: the toe joke -- obviously I'd rather it hadn't affected ANYTHING!

I asked him if I had rheumatoid arthritis & he said with the other factors involved he'd still class me as having PA. I wish I'd have pushed him a little more on that now as I'm wondering what it all means.

We discussed the meth again today & basically he told me to try and not worry too much about what may or may not happen in the future & that these days there are so many different drugs & drug combinations that the prognosis is a lot better than it would've been in the early 90's when he first started as a rheumatologist. Sulfa will be my first step on the drug ladder & depending on how things go with it, meth will no doubt be next. He also mentioned Leflunomide (I looked it up & the lymphoma thing doesn't sound very pleasant.)

Btw, he also said I didn't need the flu jab as sulfa doesn't seem to affect the immune system as much as meth & the others.

Lynn -

I should have received a letter with all the info from the initial consultation, he said it's "probably in the post"!

:roll:

When I decide to go back on the NHS he said it's pretty easy to go & see him in his NHS practice which is at St Mary's Hospital in Paddington - just need a referral from my GP.

All in all things could be worse but I'm a little hung up on numbers & what they mean & what's happening inside my body that I can't see or fully control but I guess that's the nature of this disease & in time it won't be so all consuming of my thoughts.

x

frogmorton

Hi keith

I reckon you have come a long way in a short time!!

Wow! the sulfa is going a-ok so far no problems and you actually have physical evidence that things are not quite right.. Good news that he considers you to 'be a mild case'!! That is good news I am sure.

Well done you

Love

Toni xx

tillytop

Afternoon Keith.

It IS confusing and I do understand what you mean about being “hung up on the numbers”. My understanding is that one can have a positive rheumatoid factor and not have RA – equally you can have RA without a positive rheumatoid factor so I think I am right in saying that the rheumatoid factor is really just an indicator to be taken into consideration alongside other symptoms.

Re the blood test results, I was given a very useful info sheet by the rheumatology dept, explaining what the blood tests are for and the normal ranges for each. Inflammation is measured using ESR and/OR CRP and my info sheet tells me that the normal range for ESR varies depending on what sort of test is used and that the normal range for CRP is 0 – 8. So the number the consultant gave you will most likely be either ESR or CRP. My info also states that the CRP shows changes quicker than the ESR. The changes in these numbers show how inflammation levels are and give an indication of how the medication is working ie, the aim of the medication is to get the inflammation levels into the normal range.

I always ask for copies of my blood results from the GP so I can keep a track of what’s happening, although I have to say that the blood results don’t always reflect how I am feeling.

I do hope that the sulpha helps you Keith but, if not, there are lots of other options out there. I’ve taken most of them over the years, either on their own or in combination and although they all have the potential for nasty side effects, not everybody gets them and you won’t know how a particular drug will affect you until you try it. It’s really a case of weighing up the potential benefits against the potential side effects. Me, I’d rather grasp every opportunity to be as well as I can be NOW, rather than denying myself that opportunity on the basis of fear of something which may or may not happen in the future.

Really good luck with it all.

Love Tilly xxx

keith1971

Toni -- of course (currently) being described as a 'mild case' is fantastic news given the alternatives, I'm just hoping it stays that way!

Tilly -- you obviously know your stuff! I will chat to my GP about the numbers & what's normal etc. next week when I see him. I'll also ask about that leaflet you mentioned.

You actually echo exactly what the rheumatologist said -- i.e. the numbers are only part of the picture, my actual symptoms being more what they judge things on but obviously consistently lower numbers are better than consistently high regarding joint damage etc.

And I agree with trying to be as well as you can NOW but at the same time, if I can avoid taking the more toxic drugs until I need to, all the better.

The thing I hate is uncertainty & not knowing what's round the corner. I'm a pragmatist by nature but unfortunately this disease seems to have an unpredictable mind of it's own & is prone to doing whatever it damn well pleases!

tillytop

Hello again Keith.

If you have an email address, I will happily scan in the blood test info and email it to you. Just send me a personal message with the email address if you think this would help cos it's probably not something the GP would have.

Know what you mean about wanting to avoid the drugs unless you have to but you do need to be aware that the trick with inflammatory arthritis is to manage it so that the joints do not become damaged through continued inflammation. My understanding is that the old approach was to be to do as you say and to use drugs sparingly as needed but it is now recognised that much of the joint damage in RA happens in the first few years, which is why the usual approach now is to "hit it hard" in the early stages. When I was first prescribe meth, I was scared half to death when I read in a book (which I now know was out of date) that methotrexate was only used in severe cases, whereas actually these days it is pretty much a mainstay of treatment, certainly for RA.

You are so right about the unpredictability of arthritis and, for me, that has been one of the hardest things. I am almost 16 years down the RA road now but, in the early days I was desperate for the docs to be able to tell me what was going to happen, how I was going to be etc etc. Unfortunately that just isn't possible, hard though that is to accept.

I know you are confused about it all at the moment but, if you haven't already, it might be worth you having a look at the information leaflets available on this site and on http://www.arthritisresearchuk.org/. Both sites have lots of reliable, up to date information about different types of arthritis and about the various drugs.

Tillyxxx

Starburst

You're not the only one who gets hung up on numbers and various other things. I still find it really confusing, especially as I've noticed different hospitals have different normal ranges! My rheumy told me that most types of inflammatory arthritis are treated similarly, so I suppose the exact 'label' doesn't matter as long as the treatment is right.

traluvie

Hi..

Sorry to hear about your diagnosis.. it is very daunting at first , i was diagnosed with mild inflamatory arthritis and OA about 6 weeks ago, My physio and GP said it was RA when i asked... am due to see rheumy end of month so will get a clearer picture then as my results were sent through post.. I feel like asking my rheumy is this how i am going to be now forever, unfortunately like the others have said no-one knows how arthur is going to affect them, we are all different..
Best advice i can give is take one day at a time..
Any questions you want to ask fire away ... even if you think it sounds stupid,,, we all been there and will help as best as we can...

keith1971

Tilly, have sent you a PM

I guess you're correct Starburst! As long as the drugs have the required effect I'll be happy!



It's hard not to get hung up on numbers etc. as we're all just clinging to the things that give us hope & some comfort. As well as affecting us physically, it seems mentally we're put through the ringer too.

:roll:

xx

keith1971

Thanks Tracy,

I actually did ask my rheumatologist today if I keep on the meds would I stay like this for good (i.e. not get any worse) but of course he couldn't comment on the future only the here & now!

x