Making a list & checking it twice !!!

I just thought I'd run this past you, I had every imaginable blood test run last week the usual monthly liver, FBC ESR CRP etc plus a good few extra, as I had been feeling quite overwhelmed with tiredness.

Well, ring ring, your bloods are back, Well? All perfect ESR 11!!!!! (Crp?) Apparently means 'I AM NORMAL' :)

So I am making a list for my RA Consultant who I am seeing next Monday afternoon. Am I cured? In remission? what? I want to know as I have heard the Humira can just stop working. I know she won't give me any guarantees. I want to ask about what my DAS score was? I want to know was my RA very agressive ? (I know it was very sudden & harsh) and why she suggested the Humira so early? Mainly I want to know what was it that got me this expensive treatment.

If anyone else wants to suggest questions I could ask, let me know. I always go through the list at the end of my visit.

In the afternoon I am going to see ortho consult who specialises in feet surgery, according to RA Consultant, he is young and is well up on the best approaches to feet / ankle surgery and he is interested in the patient (her words - must be some of her fellow collegues are not interested in the patient!) Oh please let him be able to rebalance my ankle fix my bunion & straighten my toes!

Hav'nt we all got very good at asserting ourselves? The nodding dog (bitch) is a thing of the past! Woo Hoo!!!

xxx Gina.

15 Replies

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  • Hi Gina, I just think your RA is very well controlled at the moment, it is always one of the big questions. Am I in remission or just well controlled by the drugs!

    Not many have a remission so like I say I think it's well controlled, and in my opinion they made the right choice putting you onto Humira when they did. Imagine how you would be if they still hadn't put you on it! I dread to think do you?

    Hope the surgeon can get you sorted they really are very good with RA patients and problems.

    Take care and good luck

    Mandy xx

  • Well I could'nt walk down to my gate after three months! so things were getting very bad very fast! They called it Palandromic RA first, but turned into fullblown RA in no time.

    At the time I did'nt realise that it (inflammation) could damage joints so fast, have become very educated reading others blogs here. As you say just controlled, but would like to get off the plaquinil now. Hav'nt seen consultant for 6 months, I think she will be pleased I have lost weight, she said extra weight was'nt helping my back, and I have less pain in my back now.

    xxx

  • That's exactly how mine was Gina, it came on so fast i didn't what had hit me. At one time it was just hopping from one joint to another before my very eyes I just couldn't keep up.

    Was much to late for me though didn't get any proper treatment for many years and by then the damage had already been done, the inflammation had serious hold over my body and I was helpless, and with a new born too.

    Like I always say things have changed dramatically now and your proof of that, I wouldn't wish anybody to have a life like mine.

    They may start to take you off the plaquinil or reduce your mtx gradually as that's how they do it in a gradual process and see how you are.

    Good luck Gina

    Mandy xx

  • Thats so great! I'm so jealous, but in the nicest possible way :)

    Looking forward to hear how tomorrow goes and the answers you'll have.

    I think that the remission you are experiencing is called 'induced remission', can't remember where I read that term but it makes sense I think.

    I'm so lokking forward to feeling like that again and tell myself not if but when, I will, I will, I will...

    I have my appointment with consultant also tomorrow, last month he said if there was no improvement this month (there isn't) then a biologic would be the next step.

    It's a bit sad that I'm so excited about tomorrow, I've been in limbo waiting for something to happen....

    Good luck :) x

  • Hi Wiliby,

    My apts are next Monday 13th. I hope your visit is sucessful and you get a chance to start a biologic it has taken a long time for me to feel better & I think it is the hUmira, I am still quite tired and really don't feel up to working even job sharing, but maybe I would feel like that without RA! I was taking pred for a long time with the humira & mtx & plaquinil, but am off steroids since xmas, the weight just melted off ( Not really) had to stop eating so much chocolate too!

    Best of luck, tmaro dying to hear what happens, hope you have a list of questions ready.

    xxx Gina.

  • I'm so sorry you feel this way, Gina, but I think this typifies RA treatment when THEY decide that they've done enough. I had an absolute gut full of my consultant saying that it was the best that they were giving me, only to email my first husband who lives in Seattle, and they get shed loads of different drugs there for RA.

  • I think that there is such a thing as" adverse prognostic factors" when it comes to diagnosing aggressive RA. Crudely I think its being RA positive, Scoring high on DAS, Having specific antibodies, plus having a high ESR and CRP level. Its not an exact science from what I can tell and also open to how the patient feels they are. In orther words the consultant takes that into account when deciding how aggressive our disease type is. Presumably those of us who get offered Anti tnf are in this category? The benefits of Anti tnf/biologics have to outweigh the risks of the drugs. Also I just read an article that to some extent they can predict what biologics we may fail on by whether or not we produce antibodies to the Anti tnf we take. People who develop antibodies( I think) are more likely to have change drug.

  • nras had an excellent booklet on biologics which they sent me a week ago can recommend it!! most people in there site humira as reducinng fatigue it a well written factual document very medical ideal for my consultant meeting end of june noe been brought forward even due to minor and more major meldowns so im off to the toy poodle section of the hospital end of june. I work in the pit bull./ rotweiller. mongrel section!!

  • Hi Just to confirm what Ali has said the first thing Humira did to me was to counteract the tiredness, it was lifechanging after the 2nd injection, pain didn't reduce that far but the pain patches work on that.

    Good luck everybody with your appointments.

    xTx

  • My My Gina how you have grown! In the bestest possible way :-) I am so glad you're bloods are normal. Mine were too last month, and I suggested remission, My cons said err you still have RA. i know I do because some days it reminds me!!! The fatigue still lingers. I will be very very interested to hear the answers to your questions.

    Good luck

    take care

    Julie xxxx

  • There is no cure I'm afraid - so either well controlled or remission although my understanding of remission is no symptoms and having energy.

    Having said that well controlled seems like a good place to be in - as in, hopefully no further joint damage:-) The joints that we have damage in will continue to be problematic and surgery is often the remedy for this. According to my rheumy, fatigue largely remains intractable - ie it continues even when other things are well controlled this is because of the systemic effects of an auto-immune disease - how it affects the rest of your body.

    Having your feet sorted out surgically will greatly relieve your foot pain, so good luck with that.

    A large part of acceptance is just that - accepting that there is no cure and therefore life will be altered by the disease. People diagnosed in the past 4-5 years have the a far greater chance of avoiding joint damage / extensive joint damage because of the greater range of treatments available.

    Glad to hear that you're reaping the benefits of being assertive and feeling more in control:-)

    Will be thinking of you on Monday and sending strength:-)

    Cece x

  • All the best for Monday Gina. Really glad for you that the RA is controlled and, apart from the fatigue, you feel so much improved. As Cece says there is no cure but being well controlled is the next best option.

    I can't get my head round remission (induced or otherwise!), the RA doesn't ever go and is only slowed down by the drugs. I like to think 'well controlled' is adequate and I can live happily with that!

    Hope you get a result with the ankle and foot (although surgery means coming off the Humira ... big consideration!) Do ask about it :)

    Let us know how you get on.

    Lyn x

  • Hi Lyn,

    I CAN LIVE WITH 'WELL CONTROLLED' oops capitals! I am glad though from all the insight on here, that I am not living in cloud coocoo? land and know that meds can stop working, and I am not cured. I think I would think I was now, if not for all the great blogs, questions, and lovely comments by all the fellow sufferers on here. Knowledge is power!

    TTFN.

    XXX

  • Hi GIna

    Just a thought to muddy the water further - I have had 3 auto-immune diseases. Each one caused by rogue and naughty antibodies. The thing I wonder about is why both auto immune conditions eventually waned.. ITP ( when you develop an atibody that destroys your own blood platelets burned out after 8 years and for Crohns colitis after several years. Pehaps I am living in cloud cookoo land but I still have faith my body may stop producing RA autoreactive antibodies. ?

    I am glad you are feeling better. its always nice to make hay while the shine shines. Maybe it will shine on you for a long long time.

    Fiona

    xx

  • Thanks Fiona,

    Thats a nice name Fiona any Irish connections? I am making many haystacks at the moment? Hopefully, your body will mend itself - its all in the power of the mind! Lol! I have U/A Thyroid, don't know if it would have burnt itself out by now, they whizzed me onto meds years ago no choice! now throid controlled by thyroxine... x In nature I'd be well dead without operations, giving birth (with difficulty) & all the meds - makes you think - no wonder average life expectancy was 35 in the middle ages!

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