Foolish action (probably)- advice needed please
Posted , 8 users are following.
Hello All
This is my second post, and I hate talking about myself, but thought I would come to you all for advice. I would much prefer to just reply to other peoples posts in a supportive way and hope therefore that this will be my last post about me!!
My first post gave background on me..summarised as having been diagnosed recently with confirmed PMR, although had the problem since Dec 2010. Have been on 40mg pred daily for some time. Had stopped or reduced steroids, on or off over time, in the forlorn hope that the PMR had gone away. Silly me, everytime I took that route the PMR came back with a vengeance.
My Rheumy has put me on a reduction plan to go from 40mg a day to 30mg a day. To then stay at 30mg until I see him in 3weeks time when he hoped to put me on to 20mg a day, where he thought that that level would be my maintenance dose. He said that he thought I would be on that level for quite some time, maybe a year or so, and then he hoped that the PMR would begin to burn itself out over time and I would be on a lower pred dose for a couple of years until the PMR went totally.(hopefully!)
Having read the many posts on this forum I quickly realised just how important it is to be on the lowest dose of pred possible. So rather foolishly maybe, or very stupidly, or downright dangerously, I gave the matter some thought about 5 or 6 days ago.
The rheumy had me on what I will call a 'top down' strategy of lowering the dose from a high 40mg to find a level that would be my maint dose. Which may well have turned out at 20mg daily. I thought that I would try the reverse of that.... I would adopt a 'bottom up' strategy and start on a low dose and flex that up over time to find a level that I could cope with body wise and hopefully would not give too many adverse side effects.
So as of 5ish days ago I started to take 5mg daily and not the 30mg I was on (prev 40mg). I felt awful with terrible virus type feelings, and of course the PMR saw its chance and came back strongly over the intervening days. Whereas though the full PMR originally was in my neck, shoulders, back, hips, thighs, and arms .... over the last couple of days or so it is mainly evident in my forearms, biceps, shoulders, and rear thighs. My forearms have been excrutiatingly painful, and I can hardly hold any weight in the arms as a consequence, even to hold a phone up is too much. And as for my rear thighs, getting out of a chair is becoming very very difficult. So it is clear to me that 5mg is no good as a maint dose for me, so I have upped that to 7.5 mg from today. My plan is to keep it at that level for 3 or 4 days and if the forearms and thighs do not improve I will keep upping by 2.5mg a day (have 5mg tabs which I cut in half) until i find the dose that works. Hopefully less than the top down route which may well have left me on 20mg for a considerable time.
I note from the many posts that it is important to get to as low a dose as poss, and this 'bottom up' approach will allow me to find that level. Obviously as I am in the fairly early days of this dreaded PMR I have to honour my body and find a dose that works. I could easily go back to 40mg which was a miracle cure for me...but I have to balance that with the side effect points and therefore find a dose that may not take away all pain etc but will at least allow me to move ok.
I tried the 5mg as a start point for my plan, based on the points made about the body producing its own 7.5mg level of cortisone.
I feel better virus wise now, so I think that I am over the worst and its now a case of finding my maint dose in a way that delivers the body benefits that I desperately need, without triggering too many side effects of the steroids.
A few questions please:
1 - When I took the 5mg of pred would my body still produce the 7.5mg naturally, meaning that I would have had in me 12.5mg... or would the body only produce the shortfall of 2.5mg. I accept my body may be producing nothing at the moment due to adrenal gland shut down. But as I used to start and stop steroids I hope mine is still working albeit intermittently!
2 - What is the sensible 'tipping point' for raising the steroid dose. Obviously as I was on the 5mg I had no choice but to raise as my forearms were terrible and my rear thighs likewise. But should i keep upping the dose until they clear fully or until they are bearable. Do I cause them long term damage if I end up on 10mg of pred and those muscles are ok but still hurt a lot but i can cope with it...or should I raise the dose until they are very alright!! I dont know if I will damage them long term if I stick on too low a dose for a year or so and the pain and stiffness is too great... versus having a higher dose with the pain much reduced, but risking greater pred side effects
3 - Is 3 or 4 days in between my 'bottom up' raising the dose ok. I knew the 5mg dose was woefully inadequate very quickly as the full force of the PMR returned. I know there can be overlap between steroid withdrawal symptoms and those of PMR..but I know the 5mg is not strong enough. I may well end up in similar position to what the rheumy feels with a 20mg maint dose, but I hope the 'bottom up' route will allow for the lowest possible dose that works to be found. I have mentally set a goal of 10mg as the maint dose which is half of that the the cons feels I may need. I know I will have some pain and stiffness at whatever level I end up on, and it is finding that balance of acceptable pain v side effects.
4 - Am I risking CGA developing by doing this 'bottom up' route and thereby allowing the PMR to gain a stronger foothold, and risk CGA starting also, due to the drive for the lowest dose of pred possible.
5 - I am going to re-start gentle walking etc (felt too bad since I dropped to 5mg, and besides was oh so depressed mentally )... and does jacuzzi type heat help at all. I cant swim sadly but if heated water would help I could do that also.
6- Is dosage affected by size etc. eg I am a 55 year old male, 6 foot 4 inches tall, weigh 15 stone (was 14 stone pre pred ), although I am still in quite good shape visually at least.... well from a distance anyway!! Would a 5mg dose for a lady for example be the same as a 10mg dose for me.
Thank you to all who read this... and I know that by doing a full u-turn from top down dosage to bottom up dosage is not a clever thing to do, aspecially in a space of a day or so. I will never repeat that and will treat the steroids with respect from now on.... though I am still amazed at the obvious problems that people experience from dropping from 5mg over many many months. I will of course honour your experiences and will tread very carefully whenever I can reach that level. I will stick to rheumy advice, and indeed all of your wonderful advice to the letter from now on.
I now ACCEPT that I have PMR, accept that the preds only treat the symptoms, accept that the PMR is not cured by preds, accept that I could have this for many years, accept that I cant self dose the steroids with what I think, accept that I must listen to the rheumy and follow his recommends, and most importantly of all, understand that there are many people out there, especially on this forum that know a million times better than me based on their own experiences, and therefore listen intently to their advice. All of these things I pledge, to my poor little body, to do.
Kind Regards (PS I am still sitting on the naughty step for self dosing!!)
Rob
0 likes, 47 replies
Mrs_G
Posted
Glad you got the message !! I really hope the 20mg works for you but as you have been on a rollercoaster tablet wise !! it might take a bit longer than normal to kick in
When my Dr changed me to non enteric coated tablets she didnt give me stomach protection but said if I had problems with them she would put me back on coated ones She showed me on the computer the costs involved at least 10 times as much for coated tabs but if they give everyone stomach protection as well ??
I dont have a problem with non coated tablets except when I got my 1s and 5s from different chemist and they were about the same size and I took 20mg instead of 4mg one day when I was trying to reduce !! I panicked a bit but was Ok
As Eileen says learn as much as you can so when you see Rheumy you can have a two way conversation about this
With my first bout of PMR I had no problems so learnt very little as I didnt need to as soon as I went on to 20mg the inflamation went and in a year I was on 1mg and my bloods were 2&3 all the way through the reductions This time as Ive had a lot more problems Ive needed more help and had to learn a lot more
You will find that this does happen to a lot of active people not couch potatos I live in the New Forest and keep horses but cant now ride I also had to give up helping with Riding for the Disabled as we run a lot with the horses and in the very cold weather it was really giving me muscle strains I also had to give up my health club as I couldnt cope with the Aerobics classes and some of the Gym machinery but I have now taken up a gentler exercise class and Nordic walking and of couse many hours lunching with friends !! PMR doesent effect that !
So its all about adjusting You might have to do different exercise but it doesent have to stop Eileen still skis lots of people swim so there is always something you can do Just dont go for the burn !!
Hope you feel better soon
Mrs G
MrsO-UK_Surrey
Posted
I know what you pain about the pain in the little muscle where the leg joins the body, sort of in the groin - that is where my horrendous pain started. At the time, I sought the advice of a physio who sort of tractioned my legs manually at a couple of sessions - big mistake! With no improvement, rather a worsening situation, he told me to get my hips checked out as pain in that area normally points to hip problems. I eventually learned the hard way that in PMR the only physio treatment you receive should be gentle massage and heat treatment - anything else just aggravates the inflammation caused by PMR.
Best of luck now, Rob, but do come back and let us know how you are progressing and, most importantly, with any queries that arise - many of us have got the T-shirt so to speak and will try and help. :ok:
MrsO (who's just found a few grey hairs this morning.....only joking :D )
mrs_k
Posted
This is the first day of your new life. Yes, it is not one you expected or wanted, none of us did.
But there are good things, you do things differently, you listen more carefully, you encounter people whom you would not have before. You are still YOU, but learning to start over and with a wealth of knowledge.
You still have a lot to offer and will find some way of using those skills you still have, albeit in a different way.
I did, and ended up running a support group and hoping to prod medics etc into cause and cure (not in my lifetime) and friendlier medication. MrsO is trying to start a new group and so is Catiep/Nefret.
Take a look at the SUpport groups listed on this site and also the Northeast site and there is an email men's group run by John Ladlow, for the questions that men do not want to ask women. We don't mind but men seem to.
Your life has not ended, you are just going to walk in different shoes, on a different path but with past knowledge.
I slept last night - thank you.
rjw
Posted
Thank you again for your current words of wisdom. By the way I am happy to restrict my forum comments to this site.. I have no secrets and certainly no male only topics. I am happy to share all of my experiences and concerns, and to listen to every ounce of advice. You can all be my gurus.. the founts of all knowledge.. those that light the path for me and others.. wow you will need to get yourself prefect badges at this rate.
(Oh those were the days...as Mary Hopkins once said)
Yes, I now realise that my life has changed. Whilst maybe I will have to learn to accept physical limitations compared to how I once was, and not constantly overdo everything... I think trying to quell my fast forward mind, along with its OCD type drive for perfection and repeat behaviours, will be another task altogether. Oh well, as you say, today is the first day of the rest of my life...so onward I strive...lets just hope I am facing in the right direction!!
Do you know what, I think the NHS or some private body should pay you all for all your efforts and time, you contribute oh so much. Mind you until recently I had never heard of PMR, and would not have given it a second thought. Isn't it strange how once the lightning strikes, just how much your world can be turned upside down, and as to what was not even on the radar suddenly becomes critical to your very existence. I so hope those that are investigating this awful disease can find a cure... and for those that would want to know eg me, a cause too.
Hope you all have a sunny day..be that weather wise..or body wise.
Love and hugs
Rob
EileenH
Posted
And we do what we do because the NHS hasn't the resources to provide the support. That's why it started in the first place - there was no info and no support. The very lucky might have the phone number of a nurse specialist - but we aren't seen to suffer as someone with RA does as although the overall effect can be quite similar, there isn't the joint damage in PMR. And we're old ( :wink: :roll: ) so what else can we expect!
You didn't tell us how you're feeling now!
Eileen
MrsO-UK_Surrey
Posted
The start of your post had me laughing out loud.....and then repeating the poem out loud - I think it's going to be in my head for the rest of the day! Good to see you haven't lost your sense of humour - keep it up! Can't believe we're old enough to remember Mary Hopkin! :wink:
Mrs_G
Posted
Look on this as hopefully just a delay in what you want to do
I knew someone who had had PMR I think late 60s-70 and eventually gave up horseriding at 80 and she took 3 weeks to celebrate her 90th Birthday she had so many friends and if you were invited in for a drink she was quite happy to open the champagne at anytime of the day She always said she didnt drink before 6 but it must be 6 somewhere !!
Also my neighbours father had it in his 60s and at over 80 he was still leading a team of sailors on a Veterans race to Guernsey each year !
So just behave yourself take the pills and you will cope much better !!The most frustrating times are when we have a flare up as you have to up your steroids and cant just go down again straight away you have to do it gradually whereas people who have Rheumatoid Arthritis if they have flare ups they just up their tablets and just go back where they were straight away
Hope the 20mg kicks in by tomorrow
Mrs G
BettyE
Posted
We are the BIG SOCIETY. We like to help each other and will continue to do. We will be exploited. No-one out there is about to say \" hey, threre is this great forum, we must support them\". But no matter. We are ok people.
The nuns used to say \" ah, but you will get your reward in heaven\" and do you know I am beginning to believe them. They didn't define heaven.
Well it has been said that hell is other people. Heaven, too if you are lucky.
Dublin,_Ireland
Posted
I have come into this chat late as I was away and not using a computer.
Rob...when I read your first post you reminded me of my hubby...he thinks he knows better than the doctors at times :roll:
Then I read all the replies and had visions of a tall macho man sitting sheepishly on a step with a long line of ladies waiting to take their turn to show him the error of his ways :lol:
I am three years your junior and have had PMR since April last year but have now also developed \"late onset rheumatoid arthritis\".
After a visit to my rheumy yesterday, when my pred was increased from 10mgs back to 40mgs and my methotrexate increased from 15 to 20, I have, for the first time in nearly 3 months, woken up and been able to get out of bed straight away with NO pain....and boy does that feel good 8) .
I had been a bit foolish too since starting the Methotrexate. I kept thinking that the next day would be better, and because I didn't want to have to up the pred again, I wasn't letting on just how awful I felt.
Thankfully, I have now seen sense, and hopefully today is the start of getting back a bit of normality :D . I used to play a lot of golf (3-4 rounds a week) and do a lot of walking, and that has beeen impossible the last few months.
So Rob, my advice is, listen to your body and if you are in pain, don't keep putting off seeking help...I did it and the only one to suffer was me :oops: and the PMR won't go until it is good and ready :cry:
Hope everyone has a good day...weather is miserable here today
Love to all, Pauline
rjw
Posted
Thank you for those great words too. I am so glad I am off of the naughty step..not comfortable at all on there!!
I must admit I feel very low today, I absolutely now realise that I cant beat this thing by being like I used to be as a Director at work. eg up pops a problem, I analyse it, come up with a solution, and solve it. Easy, now to move on to the next problem. Sadly I have learnt the hard way that my business mind can add no value to me on the PMR issue. In fact it made matters worse by me thinking I knew best and I would just play with the steroid dose. Lesson now fully learnt. Your post about putting up with pain, and not being able to move, was me all over, and as you say the only ones to suffer when any of us do that is ourselves.
My drive was just to reduce/get off of the preds... forgetting all about the disease itself. Whilst on a high dose of 40mg I felt great and thought I would sustain the improvement by just stopping the preds. Foolish or what. I have been back on the 20mg yesterday morn and this morn, but sadly it seems very slow to kick in this time. My forearms, shoulders, groins, and thighs are rubbish. In fact I feel worse today then I did yesterday. It seems as though the PMR has kicked right back in overnight. I knew that, as soon as I first tried to get out of bed, and felt as bad as I did in those early days. I so wish I had just stuck to the rules originally. No doubt my body is very confused with the 'ups and downs' I have been doing with the preds over the last 6months and in particular recently... and I expect the PMR has seen its opportunity and has smashed me accordingly. Feel rubbish body wise, and just as rubbish depressed wise. So I am rubbish all over!!
Oh well, no more upping and downing on preds, I stick to the 20mg till I see the rheumy in 3 weeks time, and hope by then that I have levelled out a bit, and he can decide on the long term maintenance dosage. He did say that he may also put me on methotrexate too, but before the considers that again I really need to stick with the dose and hope that I am ok enough by the time I see him to avoid the need for the metho. I have not really given the steroids any real chance to work long term as I have kept on stopping taking them every time I felt better. Must be a male thing as you say, or in my case a stupid thing. But as I said lesson learnt.
Hope you can re-start golf some time soon. I used to play a lot as well but have not picked up a club since this started in Dec last year. What a great christmas present I gave myself... thanks body!!!
Tender loving hugs to you, and all of our other great friends on this forum
Rob
MrsO-UK_Surrey
Posted
Sorry to hear you aren't feeling much better today but, unfortunately, patience is the name of the game here - there is no quick fix. Hopefully, you may find that although you feel bad in the mornings, with continuous movement as the day wears on you will begin to feel more comfortable.
The higher doses of steroids can make you feel down and many of us have found that giving ourselves special treats that we enjoy such as meeting up with friends for a chat (or perhaps in your case, a pint!) can help and, certainly, I found that when at my worst, if I continued to have my daily walk, even if I could only manage 10 minutes, that also helped to make me feel better - it's good for releasing those feel-good endorphins!
So hang on in there, Rob, and remember therARE better days ahead even if it doesn't feel like it now - chin up! :cheers:
MrsO
mrs_k
Posted
It is no wonder you feel absolutely low today.
You have been hit with a 'ten ton truck' in two ways.
First physically and now pyschologically.
And guess what, one of the side effects (yes there are 82 but nobody gets them all) are highs and lows - read the most common ones on the leaflet that comes with the pred.
Do not beat yourself up - you will come to terms with it all - its hard but you are a sensible person and will find a path through this damn illness.
So take MrsO's advice, treat yourself to whatever your favourite tipple is, plan to buy an electric blanket and a teasmaid. When you wake up in the morning, switch on the blanket, drink a cup of tea and at least one slice of bread and a real yoghurt with a teaspoonful of Manuka Honey 5+10+or 15+ (higher the better) swallow the tablets and luxuriate in the warmth, perhaps have a snooze and then things will get moving.
I know, I know this is alien to someone who had get up and go - well for the time being the get up and go has gone - slowly does it.
Now off for that 10 minute walk and a drink at the end of it. :ale: :redwine: :tea: :coffee:
EileenH
Posted
If we sound confident and happy and \"normal\" - it's only because we have \"come to terms\" (oh how I hate that expression) with our limitations. Where once we did it all - as you did at work - now we have learnt to work around the pmr. Some are better at it than others and some days are better than others. We know good ways of cheating and being able to do things. Being told you are going to have to do it because you have a chronic ailment for which there is no certain cure (not even time) is a blow below the belt.
You will feel better - physically and emotionally - and for most of the time. But all of us have bad days and then it's probably a good idea to warn the family and keep your head down - and come here or to the other forum where there are special places to sit and scream and where someone who has been in the same place will hear you. If you haven't already been to the pmr gca northeast support site and had a read - do go there. As well as the articles, there is a dvd which explains pmr in layman's terms so you and your family and friends and possibly even your GP have a resource that explains the predicament you find yourself in.
You are at the beginning of a learning curve - the brain work will help keep the Alzheimers at bay :wink: :lol: You will find many positives about this - but only if you look for them. You will meet new people. You will learn new skills. As Betty has said - this is the Big Society, so you will be involved in politics at the grass roots level. You will develop your skills of empathy and compassion. I could go on.
You'll be fine :D
Eileen
Mrs_G
Posted
Sorry to hear you arent feeling any better today
Personally ( and this is only what I would do ) is if I didnt feel any better by Monday is get myself some urgent blood tests and then an appointment with Dr or Rheumy to see if you should up the dose further
3 weeks to wait for an appointment is a long time if you feel so bad you cant get out of bed without pain I know Ive been there as most of us on here have not wanting to move in bed in the mornings in case you couldnt !!
So give it a lot of thought over the weekend and you might have to confess sooner rather than later what you did with your doseage !!
Hope thing settle over the weekend
Best wishes
Mrs G
BettyE
Posted
I've now had more than six years of PMR in two doses with 5 perfect years in between. ( Sorry to those who must be tired of hearing this! )
Like you and so many on here, I have not been a sit back person. I've been the one who does the organising. at work and at home. All right. I'm bossy but a lot of folks have been beneficiaries of my bossiness. Now about 60% of my energy has gone and I scream when I think about it and that does no good at all.
All those who are telling you what is best are right but I'd stake my house that there are times when they are not able to take their own good advice so don't be too hard on yourself.
Electric blanket, honey, yoghurt and teasmade take advantage of them all. Don't feel guilty about spoiling yourself a bit. In the end all around you will benefit.
Best of luck Betty