this is going to sound really silly what tests and how do they know if its is PMR or something else?
Ive been inso much pain the last few days since my steroids have been reduced from 40mg to 30mg and in the morning when i get up i can hardly walk with out hanging onto something for about one hour.
Steph
thats a big drop in one go of the pred. There are no tests to say yes or no to PMR but if you have a raised CRP blood that shows inflammation so that and the steroids working are usually enough to diagnose along with your history of course. I would ring your GP (if he/she is the one prescribing the pred) and go back up to 40mg for a while then come down slower. The walking probs and even getting out of bed are classic signs and the hour holding on waiting for it to subside is also.
Gentle hugs
Take care
Sue
Steph, you need the advice of a rheumatologist.
There are no tests for PMR. It is diagnosed by your symptoms and how well you respond to steroids. At the dose you are on now the pain should have been knocked back well. Blood tests are not reliable and are often negative anyway. If you don't have PMR then what's causing this pain? Only a specialist can say.
But what ever this is, you can't come off steroids quickly. When you go abroad you need a good supply of pred with you.
Pats
hi Pats
he knows where im going the pain has got worse since going from 40 to 30 then next week 20 then 10 then 5 then 5 every other day then none . so when i go i will be on 10 then while im there go down to 5mg, he hasnt even said about PMR sorry if i sound negative about him but he dosnt seam bothered my eye doc seams more careing. ive got my nurse on wed for blood test so im going to talk to her .
Steph
Steph, I have read both your recent answers.
If you've been on pred for more than a few weeks then the reductions below 20mg could be dangerous. They are too great.
See your GP and tell him what's happening. When you go abroad, you need a good supply of steroids with you.
As I've said before, you need a good rheumy to diagnose whats wrong.
The adrenal glands are some of the major glands of the body. If yours have gone to sleep because of the steroids, a large drop in steroids could be very dangerous. You will have nothing to keep your body going.
Pats
Steph
Go to pmr-gca-northeast.org.uk and under Useful Medical Information read the BSR Guidelines on the Diagnosis and Treatment of GCA and PMR. If you had a biopsy it sounds like they suspected GCA not PMR (but it could be both). The biopsy can be negative and you can still have GCA and that is not something to be treated lightly.
biopsy came back neg as i been on steroids fo a month before so they were expecting a neg result.
thanks
steph
Hi Steph,
I did think that you had been on steroids for longer than one month, but I still think that a more gradual withdrawal is advisable to avoid side effects. The first time I was on prednisolone my GP said he thought I did not have PMR and said he wanted me off them quickly. I came down from 30mg to 3 mg in 7 weeks. When I saw the specialist he said that I did have PMR and he thought I would have a relapse. He was right, soon after that I had a complete flare with splitting headache thrown in. I was rushed to the nearest A&E and they put me on 30mg again. That was 10 months ago.
I hope your GP will advise you to reduce more slowly and really keep an eye on you before you go away.
Pats
been on steroids so nearly three months . .started on 20mg for 3 weeks then 40mg but since last going down to 30mg on tue i start 20a.
Steph
Hi Steph,
no wonder I thought you had been on steroids longer. Then you almost certainly have to reduce the doses more gradually. To drop from 20 to 10mg is a massive drop.
As far as I can gather, your doctors still don't really know what's wrong with you and until they do your steroids should not be reduced at all, just in case you do have PMR/GCA.
I hope the GP you will see next can help.
I have felt better myself the last 2 days as I increased my dose from 7mg to 8mg and the pain and tiredness has almost gone.
Pats. How are you today? Hope you're a little better.
I slept on sofa last night and i was okish getting up and a bit more mobile than the last two mornings, the sofa is firm where the bed is bit softer? I have the first lot of 20mg tomorrow so lets see what happens. I look as if im going to have twins
Steph,
I think you do need good support from your bed when you're in pain, so very glad you are sleeping better.
Try to take it as easy as you can with this very large drop. I've told you how I feel about it, but I hope I'm wrong and you will be OK.
Don't worry about the weight, it will all come off eventually. Good luck.
Pats
Hi pats yes i agree with you , i think being on 4mg then i think its after 5 weks of him reducing i will be on none im concerned about my mobily etc thats why i want to see my gp. Due you think i should ask to be changed to a different hospital for the remey doc i dont feel his listing to me i.e cos biopys was neg its aa if he is not bothered , dont know if i said the mri is only of my head and he thinks that will be clear so i sad to him wot bout the rest of my body because there is soe thing wrong, he said lets see wot happens with little or no steroid . Theres no follow up appointment he said they will contact me after mri .hey pat im not as concerned about the weight ive got used to it and im manageing to control it , i dont the bit of weight under my ribs down to belly button that bit lok like imhaving tween lol .
Steph
p.s you have been such a support to me
Hi Steph,
Make an appointment to see you GP as soon as the results of the scan come back? If you are finding it difficult to explain to your doctors how you feel then can a member of your family go with you for support.
If the doctors who have tested you do not think you have PMR or TA then you need to be told what they think is wrong with you.
You are being taken off the steroids too quickly. I'm sure of that. After being on them for 3 months they should be reduced more slowly.
How are you today?
Pats
Hi Pats
Ive been awake since 04.30 im worn out my sister took me out and i love shopping but i said i carnt walk any more and we came home , we did stop and have lunch to to give a rest half way round shopping , im going to ask the nurse tommorrow if i can stay on aleast 20mg until i come back from my holiday do you think that would make sence , am i out of order wanting to change remuey doc to another hospital?.
how are you today?
steph
Steph,
I don't think you are out of order about anything regarding your care after you became ill. After almost 3 months of illness you still do not know what is wrong with you.
Thank heavens that you sister is with you on your appointments.
Talk to the nurse tomorrow, but she will not have the power to refer you to any new doctor, But saying that, she will be able to tell your GP how you feel and, therefore, will be a witness on your behalf as to how confused and let down you feel.
I wish that I could be of more help.
I am sure that I am not on my own when I say that the planned reductions for your steroids are too much in too little time.
Pats.
Hi Pats you have been a great help, there is one thing in my family i forgot to mention to them my brother was diagnosed two years ago with MS , im going to tell my nurse this morning, just to give them another option, now and again i get shaky hand and some times my hands will lock and pain full , do you get this , ive now got little ulcers come up on my lip and toung sorry thats splent wrong i think, i feel like ive got dementia lol keep forgetting things ( thats my age i expect) .
How are you are you feeling any better ?
steph
Steph,
The problems with your hands, yes I have had similar symptoms, shaky hands, fingers locking and also numbness which I still have on and off. My hands are also much weaker than they used to be. I honestly don't know whether these effects are caused by the prednisolone or the PMR.
Tell the nurse and your GP about the mouth ulcers - this is almost certainly due to the pred which weakens our immune system, and you can also mention your brothers MS, but try not to worry about that.
It's well known that steroids can effect the brain, so don't think you are going off your trolly. I feel the same sometimes, especially when I'm tired out.
I'm feeling reasonabley well at the moment, but feel I should get out and walk more because I seem to have very little stamina now.
Pats
spoke to nurse this morn and im going back to see doc this afternoon about staying 20mg untill i come back from my hol and im also going to say i want to change hospitals , i dont see how an MRI on my head is going to say what is wrong with the rest of my body.
My sister takes me for a walk most days but i carnt go far with out being worn out so we come home .im glad youfeel a bit better today ,do fine the cold and wet weather dosnt help.
Steph
Steph,
so glad you're seeing your doc. Hope it goes OK.
Pleased to hear you go for a walk even though it wears you out a bit. You will keep fitter than just sitting around at home.
No Steph, the colder, wetter weather is no good for any of us. I get more achy and I think most folks do with rheumatic illnesses. I take a couple of ibuprofen once a day and it does help. My rheumy says that's OK.
Pats
Hi Pats
G/P said i can stay on 20mg untill i come back from hol, he was surprised the hos doc has reduced steroids by 10mg a week he said the same as you that its to much to quick, i told him i want to change hospitals and he if fine with that told me to go and see him when i get back from holiday. At least he listened to me so on that side i feel a bit better. ill get some ibuprofen to take on holiday .
Steph
Hi Steph,
progress at last! Thank heavens. I hope you have a lovely rest. You really deserve it.
All the best, Pats.
Hi pats
yer feel better soneone is listing to me at last. He said i could stoll have TA ive gotalotof PMR symptems andsould be treated as so not left .
Steph
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