Predisinone not working

[Jamie345]

I have just been on to my rheumy nurse and told her that I still feel really ill in fact from day one that predisinone gave me no relief at all I got down to 12/12 and I put myself back up to 15m as I was just getting worse by the minute! I told my gastro doctor treating me for Autommuine hepatitis on my appointment this Monday 9 th July and told how ill I feel no quality of life at all, and getting very depressed she says I still have inflammation so for says she is contacting my rheumy(same hospital) to see me quickly , and told me to call, what I'm asking my friends on this forum is there any other medication that can help me other than predisinone? Would one of them be METHOTREAXTE! Just as I've noticed lots are on this, they say my case is complicated ?

[PMRpro Ambassador]

Sorry but I find your post rather confusing. Do you mean pred NEVER provided any pain relief or that having reduced you now have pain again?

[DorsetLady PMRGCAuk volunteer]

Hi,

If you are saying Pred never helped then three things -

a. not started at high enough dose for you,

b. not PMR or

c. you are trying to carry on life as normal so not giving Pred a chance.

I would guess from your other post that it's not c. , but you must remember that Pred only works on the inflammation factor, not the underlying PMR, so you need to take account of that.

Options a. & b. need to be addressed by Rheumy dept, and saying "your case is complicated" is a cop out!

If it is PMR then you need enough Pred to get things under control firstly, MTX is only used to reduce the amount of Pred required, but even then it does seem a bit hit and miss!

Sorry you feel so down at the moment, but perfectly understandable. I think you do need to tell your family and your GP how bad you feel, and ask someone to do something about it.

[HeronNS]

Jamie, I looked back at some of your earlier posts and I get the impression that you were diagnosed with GCA/PMR about eight months ago. I trust you had a good response to the early high doses, not the side effects of course, but relief of the symptoms of pain and your jaw pain in particular? If you did well at the beginning I can only suggest that the reason pred isn't working now is due to a combination of factors: your current dose is too low and you tapered to this dose too quickly. Eight months is not very long to be tapering from a high GCA dose to the relatively low level you are at now. Better to have taken it more slowly and avoided the pred withdrawal symptoms and the possibility of the disease flaring up again. Avoiding those problems generally means your total steroid intake will be lower than if you had rushed the taper and got to a place where the inflammation was building up again. I didn't read all your posts, was wondering whether you were using a slow taper plan or just following doctor's orders, which unfortunately are often too optimistic.

[PMRpro Ambassador]

And I agree with DL and HeronNS

[Jamie345]

I was following his orders with the tapering I think I expected to get better when I was in single figures I really am confused and feel so ill most of the time, sleep is affected and I feel I have a temperature some nights, I am still waiting for the rheumy nurse to call with some kind of help, thank you all so much.

[PMRpro Ambassador in reply to Jamie345]

Yes - but when your symptoms returned, you should have been told to stop reducing. You are never reducing relelntlessly to zero, you are looking for the lowest dose that manages the symptoms. Pred doesn't "cure" anything - the underlying disease process continues in the background until it burns out and goes into remission. It does sound as if your doctor isn't as well up on GCA as he might be.

[Telian]

I agree with all that's been said so far and can't understand why, if you felt ill from day one, that it's been allowed to continue. As DL suggests ask your family to support you, they will have more energy than you to speak to your doctors when you're feeling so ill. I hope you get an answer sooner rather than later.

Best wishes.

[Jamie345]

I did not even think about my daughters being allowed to discuss my illness, they have said to me many times upto date the rheumy nurse called me and said my rheumy wants more blood test I'll go through to hospital tomorrow to get done and she said the doctor will then look to find out why the predisinone is not doing its job, and hopefully put me on something that will help me, I think I presumed that tapering down into single figures was what was needed to get me into a more comfortable position, but I also am now not happy with my rheumy as each time I told him I still felt so ill, I feel neglected so if this does not improve I will change doctors

[HeronNS in reply to Jamie345]

Jamie, do you mind if I ask you to clarify a few things for us? According to your earlier posts your initial diagnosis was for PMR and GCA and you were put on 40 mg prednisone.

I know you've always felt wretched even with prednisone but I was wondering if the actual symptoms of PMR/GCA were relieved by the pred?

And was your feeling ill all the time a response to the pred, or possibly the fact that you never had a high enough dose to clear out all the inflammation?

I noted, however, that you were feeling better at 15 mg, and had a flareup when you tried to reduce lower.

[Jamie345]

I had a few days where I felt good enough to go out to attempt my two flights of stairs but it was never an all day feeling I accepted that and I thought this is how it works! But never once or one whole day have i felt nothing always there tremors inside hip knee shoulders always one thing there but relieved if only had 1 of these I think I'm a slow learner of this illness plus extremely ignorant and I've always had such trust in the doctors(old school) they told me I still had inflammation and my liver specialist is the one who has contacted my rheumy to see me that I should not be feeling like I do.as far as I can I'm trying to explain hope this is a bit clearer. Thank you

[Jenniyr]

Pred hasn't worked for me and I am going to see a rheumatologist this week. We are all different. It's possible I have been misdiagnosed or have an unidentified extra problem. Pred is clearly brilliant for many people, but not all. Just keep asking. Good luck. CBDoil has helped me feel more myself.

[piglette in reply to Jenniyr]

If pred does not work for you it is probably because you do not have PMR. Do other painkillers work?

[Jenniyr in reply to piglette]

Didn't try them as Doc just put up steroids and I was told nothing else works. However, last week a lovely rheumatologist told me the problem is that I need two new hips as soon as possible. Am waiting for a Tramadol prescription, which hopefully will relieve the pain.

[piglette in reply to Jenniyr]

I hope the Tramadol works, it is pretty good but gives me awful constipation. I hope you can sort out the hip replacements. Let us know how it goes. I did find my hip pain was totally different to the PMR.

[Jenniyr in reply to piglette]

Thanks.

[PMRpro Ambassador in reply to Jenniyr]

Funny how some GPs (and rheumies) can't see beyond the PMR diagnosis on their bit of paper! There are several people on the forums who have had similar experiences that turned out to be either a need for new hips or avascular necrosis.