Waiting for the blood test

Well here I am after three days on an experimental two week dose of 20mg of Prednisolone.

The difference in how I fel this morning compared with how I felt a few days ago is astonishing!

I had named Prednisolone 'Dreadnisolone' as I really was dreading having to take it but when the crunch came, I welcomed the opportunity to see if it would ease my pain and confirm - one way or the other - whether I had PMR.

I can't say I am 100% but it has only been three days and in that short time my pains have gone and I just feel slightly achy.

My blood tests were normal but I presume that the positive results with steroids confirm the initial diagnosis of PMR?

If not PMR . . What?

Hello Tilly (I'm assuming that is you posting as \"Guest\" and what a relief it must be for you to be pain-free, even if you are still a little achey. Yes, Prednisolone really does can give amazing, almost instantaneous relief but still has to be treated with respect so do take it easy for the next few days whilst your body adjusts. Best wishes and do hope everything looks up for you now.

Yes I really hope this does the trick for you I as I have said have had no side effects from steroids ( so far ) Some people seem to get instaneous relief but with others it seems to take about a week I do think as soon as we are able to function normally we all try and play catch up !! But I think you have to say I have an illness ( even though everyone tells you how well you look !!) and part of the treatment is rest If your blood results are so out of sync you probably need a Rheumatologist like I did There do seem to be lots of illnesses that have steroids as the treatment and my Dr said there are lots of people on 5mg for life for various illnesses I hope your solution has been found Best wishes

Hi Tilly,

Isn't it wonderful to wake up in the morning and feel so much better :D Your symptoms, blood results and response to Prednisolone are almost identical to mine! I started on 15mg and felt about 80% better almost immediately after starting the steroids. I took 15mgs for 3 months and dropped to 12.5mgs on the 1st January. Going well so far, feeling pretty good. I drop to 10mgs on the 1st February. I've been one of the lucky ones as I've had very few side effects from Prednisolone. No weight gain (in fact I've lost weight!) I sleep OK as well. Bit of a rounder face (but its smoothed a few wrinkles out so that's a positive). I hope this gives you some encouragement - and I agree with Mrs O, don't do too much now you feel better or the aches do sneak back sometimes! Good luck and take care.

Lizzie Ellen

Hello friends,

This morning's visit to the GP went well. I have another prescription for Prednisolone and she suggested I move form 20mg to 15mg per day. If I am unhappy with that I can move myself back up to 20 but the aim is to cut down. All good news.

I have the paperwork to make an appointment with a Rheumatologist at one of two hospitals. I will find out what the waiting list is at each.

Today is the first day I have taken the lower dose but apart from feeling cold - and the heating is going full belt! - I am OK - long may it last.

Hope you are all managing to keep warm.

Tilly

Hello Tilly and so glad your body is responding to the steroids and that you are already reducing AND you have that all important referral - I can just sense how much happier you are now after your earlier postings.

As you are one of what seems to be an increasing number of people posting who don't have raised markers with your blood tests, you haven't got that reassurance to guide you down to each lower dose, so the best advice is just to try and take it easy for the few days following the reduction to give your body a chance to 'catch up'.

Hope your referral appointment comes through soon but meanwhile take care of yourself.

MrsO

Hello Mrs O,

I am a lot happier as I am not in so much pain and my doctor is taking me seriously.

I asked her for my bood test results again as I don't think I was taking things in properly on my first visit. My ESR was 5 and CRP 1.5.

They seem very low to me and certainly not indicative of PMR if only blood tests are considered. I count myself lucky that my GP didn't just dismiss me.

Thank you for your advice about cutting down. I shall see how I get on with 15mg although I see that this is the standard starter dose for PMR so I should be OK with this - she says hopefully!

Working long hours isn't ideal and life would be so much better if I didn't work. Before Christmas, I thought about resigning but am glad I didn't as I think I will manage - taking the steroids I vowed never to take! LOL.

Hope you are managing too.

It is interesting that this cold weather seems to be affecting so many of us.

Roll on the spring!

Tilly

Hi to all and Happy Easter.

I haven't posted much in the last few weeks as it has been all I could do to keep up with a heavy workload before collapsing into my bed!

However, I have been trying to keep up with all the posts and living your experiences with you. What a great bunch you are with all the support and advice you give.

Yesterday, I saw a consultant for the first time. He was lovely and spent about forty minutes with me. Despite my blood tests being normal, he confirmed the diagnosis of PMR and told me what to do if I got one-sided headaches.

I was told to look out for swelling, particularly on hands and feet as sometimes PMR is a precurser to RA.

We discussed reducing Prednisolone and he was surprised at my knowledge of side effects and the process of reduction. I told him about this site. He was most impressed that there was such amazing support available.

He said that he was going to leave the whole thing to me to do as I felt able with the proviso to get down to the lowest dose as quicky as possible with as little discomfort as possible.

So, as of this morning, I have reduced from 15mg to 10mg. If that doesn't work, I will try alternate days of 10mg and 15mg. As I don't have to work for four days, it is an ideal time to experiment.

Tilly

Hello Tills nice to hear from you again Glad you had a successful visit to the Consultant it is always nice if someone listens to you and doesent just treat everyone the same When I have been on 15mg I have always gone to 12.5 next I went from 12.5 to 10mg last Monday and Im not feeling 100% but hoping that if I give it a bit longer I will be I felt great on 12.5 not an ache or pain in sight !! I havent seen a Rheumatologist with my second bout but I am going to talk to my Dr about the very slow reduction programme that Lizzie Ellen was given as then I am hoping my body wont notice the steroids are being taken away !! I did get to 4mg in December but ended up on 15mg again by January and that was so disppointing as that didnt happen at all to me with my first bout of PMR I do wonder if I might end up on 5mg forever as I know some people are I hope your reduction prog goes well and a Happy Easter to all ( It has at least stopped raining and the sun is out !!)

Hi Tills,

I second Mrs G's comments, welcome back and you seem to have struck lucky with your Consultant. Mine is lovely although she gives all her patients so much attention that we all take a good book with us as she always overruns. I don't think I could have done a drop from 15mgs to 10mgs - really hope it goes OK for you, keep us posted. I went from 15mgs to 12.5mgs (tough for me) a month later 12.5mgs to 11mgs (less tough) and another month later 11mgs to 10mgs (a doddle, never felt better). I'm now creeping down at 1mg every 7 weeks, I feel like the tortoise of the pack :lol: And by the way Mrs G - its absolutely throwing it down with rain here (Basingstoke) are you on a sun drenched beach in the Bahamas? If so I'm on my way :!: Enjoy your 4 days off Tills and I hope your reduction goes well for you.

Lizzie Ellen

Hi Mrs G,

Thank you for responding.

I did try - unsuccessfully - to get some 2.5mg Prednisolone to stage the reduction but 5mg arrived! The admin ay my GP surgery is hopeless.

Already, I am feeling a bit achy and have a pain in my left thigh so I may have to move to an alternate 10/15mg dose.

In three months, I have put on 20lbs which is most distressing.

Does the weight just go as the steroids reduce?

The consultant said to exercise but I really don't feel like it. Working takes it out of me and the thought of coming home, shopping, cooking, cleaning and then exercising fills me with dread!

Tilly

Hi Tills! (and everyone else)

Happy Easter from a very snowy northern Italy! Back to winter temps, -9C this morning up the mountain and more than a foot of new snow! That's nearly half a metre in the last week - what was that about summer time on the clocks?

Somehow I've missed this thread altogether or I'm sure I'd have had something to say! Tills - you are almost identical to me, my bloods were absolutely normal, it was just stiffness that lasted all day if I stopped moving although it was worst in the morning and I couldn't keep moving cos everything hurt so much! On the other hand - my GPs were more helpful than the consultant once I found a description of what I was like called PMR.

I just wanted to back up the comment about many doctors taking response to steroids as partially diagnostic. My GP in the northeast of England said they were taught that a quick positive response to a moderate dose of steroids in an unclear case was reasonable confirmation that PMR was a likely answer. Short courses of steroids at 20mg or so are used a lot for asthmatics when they have a severe exacerbation and they don't self destruct when it is repeated so trying it out once for a couple of weeks to see how you react is unlikely to do great damage! If there is little or no response in a week then the diagnosis of PMR needs to be reconsidered and investigsted further anyway.

Another point: I started on 15mg and am now down to 7mg after 8 months. About a month ago I changed over to Alternate Day Therapy so actually take 14mg on every second day. I'd tried to go below 7mg but found myself challenged too much by the cold winter (well below freezing for weeks, and I ski, though only if it's sunny). I enquired about ADT (which I had read about in the literature for other things) via MrsK who kindly asked her consultant (who I think is involved with the support group in the NE). He said he recommends trying it for patients once they are down to 10mg per day. The concept is based on the fact that the anti-inflammatory effect lasts for much longer (about 36-48 hours) than the steroids remain in the body (a few hours). Some patients with PMR find the anti-inflammatory effect doesn't last long enough though and feel they need daily doses.

If you can get on to ADT quickly the effect on the adrenals and the side-effects are lessened. I've now been trying it for just over a month. At first I found I had joint pain during the second afternoon and was quite stiff in the morning when the next dose was due. Over the month this has improved considerably and I've just decided to try to go down to 13.5mg/2 days, mainly because I was a bit stiff in the evening but felt much better in the morning the second day - almost as if my own body's production of cortisol was beginning to kick in again. The ADT means the reduction can be in 1/2mg steps per 2 days without mucking about too much with tablets. I did get down from my starter dose of 15 to 10 very easily but it was below that I had problems and there has been quite a bit written about that here: the lower the dose the bigger a percentage a 1mg reduction becomes and the body notices! Since the tablets come enteric coated as 5mg and 2.5mg you can use the 1mg non-enteric coated ones at a low dose together with the enteric coated ones to make the full dose which helps with the stomach problems. The more gradually you reduce - i.e. not more than 2.5mg at a time to start with - the more likely it is that your body will not react to the reduction by the PMR symptoms returning. Below 10mg the recommendation is not to go down by more than 1mg at a time with at least a few weeks between.

After my experience so far, I'd really recommend you go and talk to your nice GP about ADT - she must have come across it for other things. But I'd also emphasis - slowly, slowly, catchee monkey. The steroids make living your life possible - they don't cure the PMR. Someone early in the thread said that most people on this forum h

Hello Eileen

Can you tell me what regime you used to move from daily steroids to alternate day please?

I started out on 15 mg last August and have now stepped down to 9mg, where I have been stuck for nearly two months as my ESR readings are just rising again since moving very slowly (over 6 weeks) from 10 - 9 mg. Controlling the \"cape of pain\" around my shoulders, arms and neck is difficult and only made tolerable by co-codamine through the day and dihydrocodeine at night time. No pain or stiffness as such in the hips thank goodness. My best time each day is until around 2.00 pm, and then things deteriorate, so I am wondering if ADT would work for me. I have a supportive doctor who is willing to let me go my own pace, but she had not heard of ADT for PMR.

Happy Easter and a good springtime!

Jayeeh (Janet)

Hello Eileen

Can you tell me what regime you used to move from daily steroids to alternate day please?

I started out on 15 mg last August and have now stepped down to 9mg, where I have been stuck for nearly two months as my ESR readings are just rising again since moving very slowly (over 6 weeks) from 10 - 9 mg. Controlling the \"cape of pain\" around my shoulders, arms and neck is difficult and only made tolerable by co-codamine through the day and dihydrocodeine at night time. No pain or stiffness as such in the hips thank goodness. My best time each day is until around 2.00 pm, and then things deteriorate, so I am wondering if ADT would work for me. I have a supportive doctor who is willing to let me go my own pace, but she had not heard of ADT for PMR.

Happy Easter and a good springtime!

Jayeeh (Janet)

Hi again Eileen

The previous message should have read cocodamol not cocodamine :!:

Janet