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BarbieGirl
#1 Posted : Friday, August 05, 2011 8:21:11 PM Quote
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Hi again, forgot to say that on my visit in July, I was told that the RA is well controlled. I did mention that it didnt feel that way, but he assured me that its the fibromyalgia. He gave me a depo injection into right hip as I have been in so much pain that moving even in bed was unbearable. This did nothing at all, and I felt really depressed as not being able to sleep doesnt exactly help. Anyway, my DAS was 4.66 HAQ 2.63 (no idea what this even is, much less what it means) ESR 27. I decided to try going onto pred for a few days to see if there was any difference, as he said there was no point as its the fibro.
I took 30mg two days, 20mg two days, 15mg yesterday and can walk much better, get downstairs with less pain, and generally feel better. I have an appt with the rheumy nurse in September, do I tell her what I did or not???? I know they are bad for me, but I needed to know if they would help, and surely they wouldnt help for fibro or osteo? I intend coming off them now, as I know that after three weeks you have to go more slowly. Well, sorry to be a misery yet again, but I really feel that no one listens and they dont seem to "get it" or the fact that I do a very mobile job. Sorry yet againSad
BARBARA
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smith-j
#2 Posted : Friday, August 05, 2011 8:50:02 PM Quote
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Barbara

Will you PLEASE stop saying sorry. This is the place to moan and ask questions. We have all done our fair share of it and I am sure you have listened and offered advice to other people so now it is your turn.

I don't know a great deal about steroids. I have had several depot injections and been presecribed pred on one occasion. I do know that continually injecting steroids into a joint can cause more problems than you originally had. I also know that you can become dependent on pred and yes you do have to wean yourself off slowly.

Your DAS score is when they look at all the joints in your body and then come up with some mathematical calculation which tells them how bad your RA is. Again this can not always tell the true picture. On the day that you have this done some of your joints may be better than on other days. I always think about my worst day when I am answering their questions so they get an overall picture of what I am like not just for that day.

I don't think that you should beat yourself up about taking the pred, especially if it worked. However, you do need to fess up to the Rheumy Nurse in September. The reason I say this is that you should tell her how desperate you are and how much pain you are in. They need to investigate why you are in pain thoroughly and not palm you off with "oh its fibro". I am a case in point where my ESR is low but I have a lot of joint damage. I think you need to be firm with your RA nurse and tell her you are not coping and get a plan together how you are going to get this under better control. In the meantime, is your pain medication up to date and is it strong enough to keep you going until September? If not then visit your GP in the meantime and again explain how you are not coping. It is very easy to slip into depression when we are in pain and therefore your GP needs to be on the ball to sort this out.

Barbara I think you need to borrow Jenni's red boots and start stamping when you see your RA nurse to get this sorted out. Lecture over.BigGrin

Jackie
xx
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BarbieGirl
#3 Posted : Friday, August 05, 2011 9:00:34 PM Quote
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Thank you Jackie, I will tell Laura in September. Its just so difficult to explain things, they just smile and say, yes well, the disease is well controlled. When I say I still have too much pain the consultant examines me and then says its the fibro. He has refused me anymo0re pain meds (I am on tramadol 400mg per day and paracetemol x 4) I also take pregabalin for the fibro.
I will make a gp appt, although usually they refuse to to anything as "its up to the consultant"
Will try harder!!!!
BARBARA
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amandalewin
#4 Posted : Friday, August 05, 2011 11:05:07 PM Quote
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Do steroids not help Fibro??

If not, and you feel strongly it is the RA and NOT the Fibro as the rheumy has told you, then I would seek another opinion!

You need to know which disease is causing the problems and treat accordingly...

By the way- the hip steroid which didn't work- did you have it via ultra sound? I have had my two this way and they have been awesome. If they cannot be directed then they are stabbing a blind spot and thus it may not help as much.........this is why it may not have helped....

Amanda
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BarbieGirl
#5 Posted : Saturday, August 06, 2011 6:21:28 PM Quote
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Amanda, hi, hope you are doing well, I know your knees and hips have been giving problems.
He didnt do the injection via ultra sound, just the usual way, although he took ages to do it, and I was on the bed this time, usually they just give it to you standing up. As far as I know steroids dont help fibro, my sister has been diagnosed with this too, and they have told her its pregabalin and pain meds for treatment.
Take care, love to all the family x xSmile
BARBARA
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jeanb
#6 Posted : Sunday, August 07, 2011 8:03:52 AM Quote
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Just want to send my love, Barb. Hope you can get some help from the GP on Monday. When I have a problem, my GP rings the consultant and they sort it out between them. If you get fobbed off with this nonsense again, suggest they speak to the consultant. I just don't get why these bods can't TALK to each other. Tell them you just can't carry on like this. It's plain bonkers. Take care.
xxxx
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