Tearful Day today

Sending you virtual hugs amycakes

I do not understand why they do these big drops of 5mgs.......... but I have my 'L' plates up with regards to PMR and have a lot to learn...... surely if people have difficulties would be better to keep them on the higher dose for longer before dropping to a lower one?

Dear Amycakes - so sorry you are having a \"low\" day and here's a big hug :hug: albeit virtual.

As far as the increased pain is concerned, it may just be steroid withdrawal pain as opposed to any real increase in inflammation. If so, this can take up to a week or so to resolve. If after that time the pain is as bad or worse then it does point to it being PMR pain and you may need to go back to 25mg for a bit longer. If you are someone whose ESR and CRP blood test markers were raised at the outset then having those tests repeated would show whether or not increased inflammation is the culprit.

At times of reduction, especially at the higher doses, many of us have found that in order for a smooth ride we have to \"clear our diaries\" so to speak, in other words rest and give ourselves some tlc whilst the body adjusts to the new dose.

Are you able to take little walks? If so, that can really lift the spirits as the exercise releases those \"feel good\" endorphins which should make you feel better in yourself.

By the way, you're definitely not \"a pain\" - remember we have all been in the same position as you find yourself in at the moment and we so understand exactly how you are feeling - just so wish we could put it right! Hope tomorrow is a better day for you Amycakes. :goodluck:

Thank you fiftiesgirl &Mrs O, for your virtual hugs, much appreciated.Feel better already !

I think you are right maybe we drop too soon, I think I'll take a 5mg to bring me back up to 25 today, then tomorrow try 20mg & see how it goes, its a rollercoaster ride every time we drop it seems.

Thank you again for your prompt replies, really feel I have got some friends on this site.

My husband gave me a real hug & as he had P.M.R.some years ago, knows exactly how I feel.He has aches now on times,but copes with co-codamol

Heres hoping things brighten up tomorrow.

Amycakes.

Hi Amycakes,

so sorry you're having a bad day. We all have them and we come on here for a moan from time to time, so never be afraid of doing the same. I agree with fiftiesgirl, in that I cannot understand these big drops. I've never reduced by more than 1mg at a time, and now am coming down half at a time. I'm also on L plates with this thing, only diagnosed last October, but the slowly but surely method has worked for me so far. Hope I'm not tempting fate!! If you don't improve in a few days time, maybe consider going back up a bit and reduce more slowly next time.

Here's hoping tomorrow is a much better day for you,

very best wishes,

Molly. :choc:

Amycakes - sorry to hear you aren't feeling too good but as has already been said - we don't mind you having a whinge! We've all been there!

And the other thing has also already been said - these overnight drops of 5mg at a time are so unfair on your body. There is a choice of ways to deal with that. Change from 25 to 22.5mg: you can either tell your GP you want some 2.5mg pills (enteric coated version only) or, if you are on ordinary white 5mg tablets, go to the chemist and buy a pill cutter. It's not accurate to 0.01 but its near enough - half a 5mg tablet gives you 2.5mg for 2 days! Alternatively, you can take the old dose one day, the new one the next. If that is still too much, take the new dose for one day, the old dose for the next 2, then take the new one again. Do this for 2 weeks, then try every other day. Many people can manage 5mg at a time - but most of them haven't been on the higher doses for more than a couple of weeks and then it is easier. Most doctors have only dealt with tapers where the patient has been on a high dose for a week or so and when they come across us they assume it's the same rules. No, it isn't!

Later on, you really need to make sure the drop is smaller - the drop should be about 10% of the old dose and at 25mg that is 2.5mg at a time. At 15mg it is 1.5mg at a time and from 10mg just 1mg at a time. Most people hit a brick wall at some point - it might be at 10mg down to 9mg or it might be at 5mg or even 3mg. Or none of them, or all of them! Everyone is different - by try telling the average doctor that!

It isn't necessarily that the 2 weeks was too soon - more the drop was too steep and the boat has been rocked. Go back up to 25mg for a couple of days, if you feel better, wait another day or two and then try a day at 22.5mg and alternate old/new for the next week. If that feels OK, try more 22.5mg days. Then wait 2 or 3 weeks to make sure you feel stable before trying the next drop. If your doctor argues - point out to him it is your body and you feel ill. The success of the drops can only be judged by how well you respond. Don't say - oh I can't drop the dose, it makes me feel ill. Rather, make the slope you are proceeding downwards on as gentle as possible - use the wheelchair ramp, not the steps!

If I remember rightly Fifitiesgirl got in much the same state when she was dropped 5mgs at a time - and when she has followed a much slower taper she has been doing well. There are plenty of us. It is a shame that when you were doing well the drop on dose has made you feel decidedly off - it's discouraging to say the least. It makes you feel you will never be well again - which is not the case, patience is the name of the game here, and in a year's time you'll be looking back and thinking how much better you feel. Truly!

Virtual hugs as the best I can do! :hug:

EileenH

Thanks Mollycoo, I think you are right , perhaps we do drop too much, my doc says 5mg every 2weeks, Up to now it has been ok,I think I shall have to ask for some 1mg steroids & try dropping by 1 or 2.

A bad day, but trying to be positive, maybe the steroids have made me a bit depressed.

Thanks for your concern, hope you are having a good day.

Cheers Amycakes.

Hi Eileen, Just seen your message, & your suggestion sounds good to me, I will try the 25 then 20 alternate for now till Ican get some more pills.

I was doing so well too which as you say is a shame, never mind will give it a go.

Feeling more positive now I have read all the messages, thank you Eileen you have given me hope on a really bad day,

Amycakes

Hello Amycakes

It is always difficult to know if it is steroids withdrawel or the PMR isnt ready for another reduction Do you haver blood tests done and are they a good indication opf how you feel

With both my bouts of PMR my Dr has done blood tests then discussion of where we are going next I have never done a reduction without bloods I have always had 2.5 tablets but did only start at 20mg I also as I got lower worked out my own about 8 week plan to go down about 1mg after having a blip last year and fingers crossed this is working I know Lizzie Ellen had a plan from her Rheumy that was very slow also

I do feel its wrong that a one size fits all policy is used by lots of Drs and Rheumys There is definatley someone on her who clears the decks when she is planning a reduction and when I was on higher does I didnt reduce around holiday time or any really busy times

I am sorry you are feeling low try and do something to pamper yourself in the next few days and make others look after you Its not good your husband had PMR as well but at least he understands I do still find even though I have now got to 2.5 I have wipeout days where all my energy disappears

I really hope you feel better soon

Mrs G

MrsG

I, too, even on only 1mg, still have the occasion when I feel total fatigue sweeping over me - it takes me by surprise when it happens these days as it's so few and far between unlike those early days when it was such a frequent occurrence. I guess the body will take some time to adjust even when off the steroids completely as so many hormones etc have been affected. However, with you now on 2.5 from 20(?) and me on 1 from 40, we must count our blessings! :D

MrsO

Hi Amycakes, we are both in the same boat - think we will have to row a bit slower.

I did expect problems with mine as I had a similar situation last year but this time round it hit me earlier in the reduction process. Still, even if you are not reducing as quickly as your doctor would like and if you are alternating doses for some time, you are still taking in [i:4c38654f3e]less[/i:4c38654f3e] of the Pred overall, which has to be good!

A word of cheer, too.........I got down to 2.5 last time round.....wonder if I can do it again!

Nefret

I really think this idea of reducing every 2 weeks is overdone by the docs. It does work in some cases where the patient has something else - but what I think is in their mind is that the steroids have sorted out the inflammation and now we have to get the patient off the steroids. They just can't get their heads around the fact that this isn't a chest infection that needs a bit extra to reduce the swelling in the airways (which for GPs is their main field of experience) - this is an ongoing disease process and if it hasn't finished it will all just be back at square one. If they didn't give a high enough/long enough course of steroids the problem is still there so as soon as they reduce the dose it will surface again. If they did give enough for long enough, you then have a different problem: getting off the steroids without the body noticing (so to speak). So finding the lowest dose you can manage the symptoms at needs to be approached very delicately. Does it matter if you do it 1mg or even half a mg at a time, with a wait of 2 or 3 weeks between each drop and it works OK or if you drop 5mg every month and half the time you have to go back to the start and try again? I've been dropping half a mg every other day for the last few weeks - so far so good. I'm carrying on that way - OK, I'm lucky, I don't have to argue with anyone about how I do it.

Good luck all of you with your reductions - perhaps it works better if you wash down the steroids with a glass of brandy? :wink: :lol: Maybe we should do a study???????? :roll:

EileenH

Hi AmyCakes,

Sorry to hear of your problems reducing :cry: and hope all the virtual \"Good Will\" is helping a bit.

I had 2.5 tablets for when I was reducing from 25mgs until I got to 15 and stayed on each dose for four weeks, then went down 1mg a time until my current 9mgs....which , so far is going well and that is my lowest dose yet :!: :wink: .

As the others have said, there are no hard and fast rules as regards reduction, and what will be fine for one person is'nt tolerable for another, so we have to \"Play it by ear\" a bit.

It is extremely unlikely that any of us have got a rheumy who has first hand experience of having PMR or been on steroids themselves, so they can , at best, offer a guide....but they really don't have any insight into how much difference 1mg can make :roll: .

I was very lucky that when being assessed for disability benefit, the doctor who examined me had been on long term steroids himself for a spinal problem. He was brilliant at understanding the emotional roller-coaster that comes with steroid use and the sleep disruption, fatigue and other side effects that some of us get.

He was also the first person to be totally honest with me about how long this wretched illness could last, as my rheumy had been gleefully telling me I should be fine within a year at most :roll: :wink: .Rheumy has since revised his prediction to two years :lol:

Well....year one is over with, and Yes....I am way better than I was 12 months ago.....but I am still at the mercy of PMR and not able to function to pre-illness levels....but I can live with that (no choice anyway).

One day at a time & hopefully, more good ones than bad.

Hope things improve for you very soon.

Very best wishes, Pauline.

Hi everyone

I've had visitors so haven't been on here for a while.

Well done to you all for your reductions and lets hope it continues to go smoothly.

I have had a problem that I don't think is PMR but...well, I'm not sure.

About 10 days ago we went on a long cliff walk and it included a VERY steep descent and then ascent - probably about 100 VERY steep, deep steps down (I wasn't counting) - for each step I held my weight with my left leg and stepped down with my right, if you see what I mean. Well, by the time I got to the bottom, it felt like my left leg was giving way. I wasn't sure if it was my knee or thigh. I had huge difficulty getting back to the car, leaning on a stick on 1 side and my husband on the other as my leg wouldn't hold me up. For the next week, I could hardly stand on that left leg - the front of the thigh was so painful and sore to touch too.

I know you will say it was sheer stupidity! And you are right - but I didn't know that steps etc were coming and once there I had no option!

Anyway, now my left leg is fairly ok but now I'm having a very painful thing with the top of my right thigh - very painful to stand from sitting and takes a while vefore I can put any weight on it. My son says it could be because I was walking awkwardly before due to my painful left leg.

I am worried it might be PMR returning but it is only 1 side at a time and I remember the PMR pain/stiffness being on both sides.

I am still on 2.5mgs x 6 days and 0mg x 1 day.

Bit of a wreck actually as I'm also having a lot of mucus and painful chest from coughing (think its due to acid reflux). Don't know how I will get back to school/work in a week. We have loads of visitors for Easter weekend too.

Sorry - that's a very long story. I'm being a right misery recently.

Can you lovely ladies offer any advice??

Beev

Oh Beev - I would be all in if I had done that amount of climbing and I'm only on 1mg!

I know what you mean about not having any option once you're committed as it happened to me on a round walk at Virginia Water when I knew I was in trouble and there weren't any seats! I suffered a severe flare in symptoms and had to increase way back up. However, this was in the second or so year following diagnosis (now 4 years) and, in my case, PMR was then, with hindsight, nowhere near going into remission.

You have been doing very well and are on a very low dose so, hopefully, you could just be lucky ad get away with this. Your clever son is probably right about the strain you have put on what was the good leg - the muscles can be weakened by the steroids and therefore can be easily injured and this is what happened to my arm muscle which caused long term pain which I was convinced was PMR so didn't reduce for many months. A physio sorted this problem out for me and I'm wondering if this could help you as well. Also, have you tried alternating ice packs and a hot water bottle/heat pad?

Do hope it resolves quickly so that you can enjoy the rest of your much needed break. :goodluck:

MrsO

What would we all do without each other?

[color=red:eb9c321071]Amycakes,[/color:eb9c321071] [color=blue:eb9c321071]Beev[/color:eb9c321071] you have both been having a rotten time I'm not sure whether it's worse when we overdo things and suffer through our own fault or when we are not well advised and suffer.

It will get better ( and probably worse again ) before we are all finished and no one has to apologise on here for having a moan in a bad patch.

Pauline is so right when she says we have to play our reductions by ear. If rheumy consultants don't have any idea what a difference 1mg. can make, then they should. We might be our GPs' only PMR patient but that won't be the case with a specialist. I'm not finding 0.5 reductions easy at the moment yet, in the past, I have reduced 5mgs. with no trouble albeit from higher doses.

I've known a few teachers in my time who couldn't get their heads round the idea that children are all different in the way they behave and learn and vary from day to day and they weren't very good at their job in my opinion. Same goes for doctors. Med school applicants need more than four A*s. Patients, like children, are people.