At last!!! blood test results

nanasue · 24. Aug 2010, 10:18

Finally got my blood test results, my ESR is 96, the second highest level I've ever had, now I know why the pain is so bad. I've left a message for rheumy nurse, Iwonder if she'll get back to me? I need a steroid injection, last time I had one my ESR was 95 so I know that's the only thing that will work. I hate it when they say they're not good for you, it's so patronising when they don't know what the pain is like, I know you shouldn't have them too often but when the pain is that bad you don't care. Obviously the MTX is not working for me so why don't they try something else, simples!!! But as most consultants think they're GOD they aren't going to listen. But hey-ho I'll keep annoying them till I get something done. Hope everyone else is having a better day than me, if not I'll try to send good vibes your way.

angie1973 · 24. Aug 2010, 10:25

It is hard to get anyone to understand just what long term chronic pain can do to a person.

I've said it before, if they could have one day in our bodies on our worst days, they wouldn't argue.

If it's the only thing that can work, sometimes that out weighs any negatives you may be told.

I hope you get some relief soon.

Ange..

dreamdaisy · 24. Aug 2010, 10:27

I have just asked you to post your results and you have! You are right, 96 is waaaay too high and proof that meth isn't controlling anything. For some of us it's a pants drug - I'm in that group, my worst booklet-recorded figures on it were CRP104 ESR 79, tho both have been higher whilst taking it. When I upped the oral steroids they fell to 19 for both, then with the first hit of humira they dropped to 5 and 1 respectively, where they have stayed ever since.

You may well need a meds review, perhaps other things could be added. What have you tried in the past? What would you like to try now? DD

dorcas · 24. Aug 2010, 10:32

Hi nansue

I do hope your rheummy nurse does phone you back soon.

and that you'll be able to get the steroid injection (IM ?) as a short term relief.

Are you due back to see the rheumatologist soon? at least then you could discuss whether he should be reviewing the combination of meds you're on and what alternatives / additions there are to Mtx.

please let us know what happens?

Iris x

nanasue · 24. Aug 2010, 10:47

Last time I saw rheumy inJuly he was very aloof, dismissive and not at all nice. When I told him Iwas in a lot of pain he just looked at me as if to say "Yeah, right", he totally dismissed me without asking any questions and told me to come back in NINE months, what a joke !!! That will be next April at the end of the winter, if I'm like this now I'll be so much worse then and he knows that. I'm not going to give up I'll keep pestering till they do something, I'm fed up with being treated like something on their shoe, this worm has turned. Thank you all for your kind replies and help, they make me feel so much better, it's nice to be in touch with people who REALLY understand. Love nanasue xx

julie47 · 24. Aug 2010, 11:25

Hi nanasue

Hope the rheumy nurse rings you back and that ou can have an appointment very soon.

Hope too that if they change or add to your meds that you soon get relief. sorry to hear you are in so much pain.

I know its hard but chin up and keep positive.

Thinking of you juliepf x

sharmaine · 24. Aug 2010, 11:55

Hi Nanasue

Sorry to hear that you've been suffering. I hope they give you something that will ease your pain. I don't think people who've never had chronic pain on a daily basis really understand how much it gets you down.

How are you feeling know?

Regards
Sharmaine

marion1952 · 24. Aug 2010, 12:31

Hi Sue

Sorry to hear that your ESR is so high - no wonder you are in pain.

I think my highest was 116 a couple of years ago, and I could barely move then..

The rheumy nurse should DEFINITELY offer you something to get that level down.. and it sounds like you need a full review of your meds anyway if the methotrex isn't working..

Hope you get sorted out soon. let us know how you get on..

Marion

dorcas · 24. Aug 2010, 12:56

Hi again nanasue

I think it is awful that you were made to feel so low by your rheummy consultant at your last appointment....and I hope that the next time you go to the hospital you will be treated with more consideration.

Do you have a helpful GP who will support you? could he perhaps contact the rheummys on your behalf? I know you are waiting for the call back from the rheummy nurse but perhaps it is the consultant you need to see; next April is a long long way off :roll: :shock:

wish I could suggest something more effective :oops:

keep in touch,

Iris x

woodbon · 24. Aug 2010, 13:41

HELLO I hope you get the injection, it sounds as if you need it! Pain is so tiring and its so hard to think properly when you're in pain, so I hope you soon get sorted out.

Lots of love Sue

bluelobster · 25. Aug 2010, 05:04

Who are these clowns!!!?

B***er the nurse. Tell them you want an appointment with the consultant. Nurses are ok when everything is tickety boo, but they won't make a decision on something like this. Find out who the secretary is and contact her/him yourself. If he dismisses you again ask to see someone else for a second opinion via your GP. Ont thing i have learnt over the years is that willingness to treat/try new treatments/opinion is very diverse from consultant to consultant. you ideally want to see someone young. Also, you need to find out what parts of rheumatology they sub-specialise in. For example, i was seeing a chap for a few months before i moved house who told me that my elbows were painful because i was carrying my bags in a wrong way!! Despite the fact i had RA. After the fact i found out his subspecialty was OA and lupus!!

So in short do your research and get a new opinion.

Be persistent as well!

nanasue · 25. Aug 2010, 05:48

Thanks bluelobster, your reply was helpful and enlightening,but how do I find out what their sub-speciality is? and do the other research? I've had to put up with this for the last 5 years but now I've had enough. After talking to other people I realise how crap they are.

dreamdaisy · 25. Aug 2010, 05:57

Try googling their names. That might bring some info to light. DD

bluelobster · 25. Aug 2010, 05:57

nanasue wrote:

Thanks bluelobster, your reply was helpful and enlightening,but how do I find out what their sub-speciality is? and do the other research? I've had to put up with this for the last 5 years but now I've had enough. After talking to other people I realise how crap they are.

Hello Hun,
.
You can start by looking at the hospital website. They normally have a consultant/clinician A to Z section which should tell you. Otherwise, try googling him/her or have a look on the GMC website or www.specialistinfo.com.

Either way they can't just leave you like this. Please make sure you are persistent though, i know you shouldn't have to be but it does make a difference. There is no point in monitoring the blood results if they aren't going to tweak your meds based on the outcome.

Michelle

lavenderlady · 25. Aug 2010, 06:23

I some times think that for chronic pain like arther they should have someone with this type of pain in with the Drs to give their point of view if they dont want to believe us then maybe someone neutral who has suffered this pain could give you support I for one would allow this , same goes for these DLA etc interviews we need someone to back us up,who knows what we are talking about becasue chronic pain can mean the difference between a great life coping with arther or a miserable life that is not copingwith it ,

At last!!! blood test results

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