I put on a new post 6 days ago having found this great site. It has been so great to chat with others who understand and can give support.
My initial post explained how I was diagnosed last Oct, and have been reducing my steroids from 15 down to 6mg. I also asked if others had similar symptoms.
I wasn't pain free at 6 mg. I had been taking 3 mg morning and night. I read on here that taking it all in one dose in the morning seemed to work best. So the following day, 5 days ago I changed to take the 6mg in the morning. Since then I have been really suffering, awake during the night with awful muscular pains. I have even been taking the dose about 4 am and going back to sleep. The mornings have just been awful, not being able to do much at all and gradually during the day it eases, but not as good as it was. In desperation yesterday at about 4 am, I increased my steroids back to 7 mg. I understand it is early days and I have messed with my steroids which may take time to settle now.
My dilemma is now what to do? I am supposed to be going to a music festival camping on Friday. This has been the highlight of my summer plans, and as I am find it absolutely impossible that I could go. Quite frankly I would rather just stay home, but would be letting down special friends if I don't go. What is the best thing for me to do right now? Go back to taking the steroids split into two as I was doing originally? Will this not just unsettle things again? Im guessing there is not going to be a definite answer as we are all individuals in this. Or should I stick at what Im currently doing and hope there will be improvement soon.? Going to my GP is not an option as sadly I don't thinks he really understands. Or would you suggest I increase my steroids higher?
Feeling absolutely sorry for myself, but definitely not wallowing! What an awful illness this is. Looking forward to some support.
Kind regards
Gill
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Has increase to 7mg helped at all. More pertinent at what dose were your symptoms controlled or were they? you have seemingly reduced at 1mg a month more or less and maybe that is just too quick. I know I said so the other day.
I understand your reluctant regarding a tiring social event. Xmas with family hit me at same tine and I had to do afternoon naps.
When I hit where you are and felt similarly after same amount of time as you GP put me up to 12mg again and was big relief for couple of weeks. I had bloods done and inflammation higher than at diagnosis. But even if they hadn't been was glad of pred support.
I know you what to get off meds asap. But I would up dose until I felt "ok" and discuss with Dr.
You wouldn't be human if you didn't get teed off with it.🌻
When I was on 7 mg I was feeling ok. Not 100%, but I could cope with the limited pain. So after 8 weeks or so dropped very slowly to 6 mg. It has obviously not been good for me and I should have stayed where I was. Also changing from 3 mg morning and night, to one dose of 6 mg in the morning has knocked me for six too. So back up to 7 mg yesterday and sticking with the one dose in the morning is where I am right now, with no relief so far.
I know from the beginning I have just wanted to get off the meds!, and all the side effects they have on me, but I am learning from this group and my mistakes that you have to take it steady. I have really unsettled things and am suffering as a consequence!!
It does feel like a very backward and frustrating step back if I up my steroids further, but it may come to that. I think I should give it a couple of days and see if going back up to 7 mg yesterday may have some affect. If not then I may see my Dr to discuss this and ask for more blood tests, as Im quite sure my inflammation is very higher than it has ever been before. I never had this much pain at the beginning.
I do feel for you. It's a hard thing to balance. I have always taken one dose. a few weeks at 7 or 8mg here might save months at 13 later. I had that sense of disappointment but realise that inflammation probably takes 2-3 yrs to go so might as well be pain free as much as is possible.
it might take a day or two.for 7mg to kick in but worth getting crp and esr checked if you need that to process your next step. I hope you are able to go and see friends. Distraction is a good tool as long as you rest when you can.
1: Cancel the camping.............if they are good friends they will understand.
2: Go to pmr-gca-northeast.org.uk and read up all you can, in particular click on the map on the home page and see if there is a support group near to you.
3: On that website, read up on the Diagnosis and Treatment of PMR (and also take particular note of the symptoms to watch out for GCA.
4: Diagnosed in Oct 2016 and it is just now end of August............
Now if I was you, which I am obviously not..............I would go back to 10mg and hit it hard and fast and then after say a stay for at least two weeks you could try a small drop and send an email to pmrgcafighters@gmail.com, subject heading 'Reduction Plans', they will be sent free of charge and you can see if either of them will work for you.
The best plan is to take your pred as early as possible in the morning with a cuppa and a slice of bread and then snuggle down for an hour and give them time to kick in, followed by a warm shower. Never on an empty stomach and don't take your Calichew at the same time (if you have been prescribed them - one counter acts the other so Pred for breakfast and Calichew for lunch.
On that website, read the Summer Newsletter, in particular Page 4.
You are, unfortunately, in for a long haul, but you can educate yourself and knowledge is power and you can make the journey easier (hopefully) for you.
One final thing, yo-yoing with pred can cause a problem you do not want at all.
Now educate your GP gently, by saying you have been reading up on PMR and blah blah blah, if you think s/he is the sort of person you can talk to. You could also take the BSR Guidelines on the Diagnosis and Treatment of PMR.
Ask a Vitamin D test to see if you are deficient, if so, that deficiency test should have been done before you were diagnosed with PMR, it is an exclusion test because that deficiency can and does cause aches and pains just like PMR. Now before you say, I get plenty of sunshine, yes but I bet you slip, slap and slop. Anyone living North of Tuscany can have a problem, and guess what Vit D deficiency is high in the sunshine states.
There is much more to learn and it is a steep learning curve, but you have found this site and that is a good start.
Listen to your body and act upon what it is telling you.
Good Luck on this journey none of us ever wanted to undertake.
Thanks for your advice, I shall definitely be doing the research you suggest.
In hindsight I now realise that I was dropping the steroids too quickly. I have learnt that now. I have an awful lot to learn about PMR.
Initially when I was diagnosed I had lots of blood tests so guess I had the vitamin D one at the time. I have recently been referred to a rheumatologist, so hopefully the appointment will come through soon and I should get more checks. I have also made a phone appointment with a GP at my practice (as I couldn't get into a car if I tried!) My GP is away for 2 weeks, which is bad timing, but hopefully he/she can give me some useful advice. Probably to up my steroids to 10 mg at a guess!
I have looked at support groups and found one not too far from home, so will look going there soon.
I am still hoping to get to the festival this weekend, we shall see? Its a long story but for years my husband and i have been going to large festivals with friends of ours. Very tragically our friends husband was taken suddenly very ill and died last year. So part of rebuilding her life and giving herself challenges to move forward his wife said she would love to come with us. So if we cancel this is going to cause more set backs for her. My PMR seems so minor if comparison. I know its not, and you know its not, but I so desperately don't won't to let her down.
Just so you know, I had GCA only and it took 5 years to go into remission, there is no cure for either PMR or GCA. You have to learn to march to a different drummer. It is not so tough when you realise you cannot win against PMR and/or GCA the both come when they want and go when they want...........you have to manage it so you can live as near to normal (whatever that is).
There is light at the end of the tunnel, we just do not know how long that tunnel is and it the best-way is to learn to listen to your body and become selfish.
During that time I had to cancel long winter holidays in Spain and other things we had booked. They nearly all understood. Festivals will be there and your friend will understand. Instead of a festival, think about a B&B or hotel nearby and perhaps if you cannot go at a particular time then your husband can go with your friend whilst you take it easy, then you can enjoy them telling you all about it. You will be amazed how close friends understand. Those that don't are not close friends.
Now to be blunt, which I hate, messing around with pred and not taking care can and does sometimes lead to the big sister coming along GCA and I would not wish that on my worst enemy.
This post was very helpful for me. I'm just beginning to taper from 25mg. Dropped 1 mg doing old dose new dose every other day. Just completed one week of this. The first two days were horrible...pain was like onset prediagnosis but my body adjusted. Now I want to try one week of just new dose.
I still have random shoulder and arm pain I can manage but all the other pain areas are gone. I am unsure of tapering process and study various methods. I have osteoporosis, Pred head and some vision issues when I drive, which should decrease when inflammation decreases. I have wrist pain that orthopedist said was tendinitis but I think it's PMR related. I just got a prescription for physical therapy since doc wants me to lift weights and stay as active as possible.
Thank you for sharing too Sandy. I believe you have the email address now and am absolutely sure you will be given some good advice! I won't offer any as I have make mistakes that I am now learning from! My only advice is slowly slowly. If you read the responses from my message you will learn a lot from these caring people.
I'm going to be frank, so don't be upset, but you're not approaching this in the right manner.
You have to understand the Pred doesn't cure anything, there is no cure for PMR, all the medication is doing is keeping the inflammation caused by the PMR controlled. You still have the underlying illness, which is a serious one, until it decides to go into remission - on its own, nothing you can do to speed it up!
If you had a broken leg, and then had a plaster put on it, you wouldn't dream of trying to run a marathon with a cast on it would you? No, you'd wait until the bone had mended itself, and the cast was off.. Well Pred is much like a cast, it doesn't repair the underlying problem it just protects it whilst the body repairs itself.
Think you're try to do too much - reducing too quickly, juggling with timings plus adrenal glands are being put under pressure.
Go back to a dose you felt okay, maybe a mg or two higher, get yourself back on track, and then consider your reduction plan. Slower in time and dose - many people find once they get to around 7mg the only way is 0.5mg at a time and a slow plan - I used one that took 4-5 weeks to get from old dose to new. It worked.
If you feel the spilt dose is right for you, then follow it.
As for the music festival, give it a miss this year, there will be chances next year, when hopefully you'll be more equipped to enjoy it! I
thank you again for your sound advice. Absolutely no offence taken, I am having a very emotional day, but needed to hear this. I pretty much think I should go back up to 9 or maybe 10 mg and just get myself right again, I can't live like this. I did think I was going slowly and reducing over a couple of weeks, but have learnt the hard way. I have to be in the right place before I start reducing, and as it was when I dropped from 7 I was still having some pain.
A split dose was i thought working for me, but don't you think that with all the recent changes I dare not start splitting it again?
I know it's demoralising, but you have to get yourself back to being almost(?) pain free and able to face the day. Don't beat yourself up about it, most of us have been there. Personally I lay a lot of blame at the doctors' door, many don't understand the illness, and yet they expect, almost bully patients into reducing too quickly. Then when things go awry, which they often do, it's the patient who feel guilty thinking it's their fault. It's not! It's the illness, it so unusual compared to most others, and it takes a while to a) get your head around it, and b) learn to manage it.
It is recommended that you take your medication as one dose early morning with food, and that's what most do, but it doesn't always work, so they try different times etc.
I would suggest, but it's up to you entirely, go back up to say 10mg, morning dose, and start again. Ignore what's gone before, and start anew. Reduce approx monthly, so longasyou feel okay, and that means no, or very little pain. 1mg at a time, but if that proves difficult you can always try 0.5mg a month. If you want to stick to the 1mg a month, then drop 0.5mg every 2 weeks. Two weeks on a dose should tell you if that dose is enough to control your inflammation, if it's not then you'll get an increase of symptoms.
It is not a race, so if it takes longer than you want so what. If you say to yourself I'm going to have PMR for at least 2 years, then it brings it into perspective. Don't think I must reduce on such and such a date, let your body guide you.
As I said you have a serious underlying illness, and it needs patience and some TLC to get through it.
You do what works for you. If what you have tried now doesn't work for you - stop, at least go back to what you were doing and don't worry.
And to be honest - I'd suspect you aren't taking quite enough. You can increase the dose to cover your weekend - up to about a week or 10 days it should be no problem to drop straight back to where you are now. There is no virtue in taking too little - you need enough to manage the symptoms to have benefits to outweigh the downsides of pred if you have any.
"What an awful illness this is. " - not that bad, a pain in the anatomy perhaps but it CAN be managed well with a bit of experience and PMR doesn't kill or maim. Always look on the bright side!
I would dearly love to go back to 9 or 10 mg even if it was just to get me over this flare up, but I was worried to meddle too much with the steroids. If that is so that I could do that for a week > 10 days and then drop back down to 7 mg where I am now. (went back up from 6 to 7 two days ago) Then I would think that was a good solution to my current situation.
if it were me feeling like you do I would go up to 10mg until I felt better and the inflammation was under control for a good period of time not just a few days. I would then go down 1mg at a time. The drop from 10 to 9 is within the recommended 10% reduction. Going down to 7mg obviously isn't and often causes problems like you are experiencing.
Hi Gill, there is no reason you should not do what you are suggesting. If everything is OK you should be able to drop back to 7mg without tapering if you go back to that dose fairly quickly say within a week or two. You may find that you want to stay on a slightly higher dose for a while though.
You need what you need to manage the inflammation. If you don't take enough - you will have symptoms.
One thing I have learned about long term non terminal illnesses is they always win if you try and fight them. The psychological and emotional acceptance that it will take it's own sweet time and all you can do is hang on for the ride is a must. One's job is being kind to yourself, controlling pain effectively by managing the medical treatment in a timely and sensible manner and resting and pacing when it is required. Like everything in life we fall down and have to get back on and hang on again.
I try and give myself this little talk more often than I would like. lol. I have shouted and sworn at my own body, fallen out with it and made up again.
I actually have no issues taking pred (until scan results come in lol ) and if I end up on a few mg for years I will have to do that. If you think that 10mg is only 3mg more than your body might produce on its own it doesn't sound so bad. At 13mg ...my current dose..i am, mentally, considering that as taking an extra 6mg. I know this is technically not "true" but it floats my boat.
I look at it in exactly same way - floats my boat too!! And I do actually have next to no side effects - lost weight by careful eating, no sign of pred diabetes, bone density also stable.
Just so you know, I had GCA only and it took 5 years to go into remission, there is no cure for either PMR or GCA. You have to learn to march to a different drummer. It is not so tough when you realised you cannot win against PMR and/or GCA the both come when they want and go when they want...........you have to manage it so you can live as near to normal (whatever that is). There is light at the end of the tunnel, we just do not know how long that tunnel is and it the best-way is to learn to listen to your body and become selfish.
All I want to say is, I've had the same problem and it wasn't until I came across this site and got a lot of advice from a lot of caring people. The advice given to me was take the amount of pred that you feel good with, for me it was 10 mg. Reduce very very slowly, it's not a race. I'm reducing 1mg per two months. I take the pred in the morning with breakfast. So far so good. I'm now down to 7 mg. Mind you it was a struggle with the doctor to get a prescription of 10 mg. The doctor even suggested that I don't understand what a flare up is.... really, no joke! I persisted and eventually got the 10mg prescription. The doctor wasn't happy! Just too bad, I know my body and I know what the pain is, they just don't understand. Anyway, slowly, slowly is my advice and I hope it all works out well. Last comment, these guys on this site really understand and for me take their advice and you will get through it.
I, too,split my dose -12.5 at 0500 and 5 at 1700 with pretty good relief, some shoulder discomfort in mornings, I tried to take it all in the morning and pain was back, I found for me splitting dose works best - prednisone lasts for me about 12-14 hours.
Thank you and I will do that now. It has just been so wonderful having the support. I am having such an difficult time of things at the moment, and very much appreciate your messages.
Thank you to all the kind caring people who have replied to me. I have been through a very rough few days, lots of pain, lots of tears and its just amazingly comforting to speak with people who understand and have gone through/going through similar situations. Its so difficult talking with family and friends when they really don't know what your going through.
So I went up to 10 mg today and am feeling so much better. I have spoken with a DR, not my own, but she was happy with my decision. I also seem to have piriformus syndrome also, which could also be sciatica, but I don't think so. I am doing some gentle stretches which I could not have done unless on 10mg! I have read and inwardly digested the advice given and understand that I will stay on 10 mg for a while now and let it all settle down. And then very slowly cut down!!
This is all going to take time and Im just going to have to go with it.
Huge thank you's again to all who have sent messages, Im feeling the love and advice xxxx
Piriformus is bad enough itself. The stretches I found online really helped with a stretch band too..it seems to have eased considerably after a few weeks.
I am really glad you have found some relief on 10mg and that the doctor supported it. It is difficult for friends and family to understand. Like all "invisible" illnesses it's hard to explain and understand. Hope you are on upward slope but with rest breaks. 😊
Ahh you have had Piriformus too!, it is really painful. I went to my Chiropractor this afternoon and it does seem easier. Yes I found some stretches on line and have been doing those regularly. I just know in the morning it will be awful again for a couple of hours, easing as the day goes on. It is nice to know it gets better in a few weeks.
Yes taking 10mg has brought my PMR inflammation under control quite quickly, amazing. I am learning to make them my friend!!
Many thanks again and I hope you are keeping well now.
I am a steroid coward and am reducing very, very slowly due to this wonderful site and the advice , the lovely sense of humours and care. I am currently reducing to 8 1/2 after having had a slight flare when I tried dropping from 9-8. So far, so good and my lovely GP always listens to me and asks how Its going when reducing and never has a problem with doling out the pills so, be patient and as pain free as possible. Good luck
I take 5 in the morning and tried taking 2 more at night but had to go back to 3. For me that works. I had a vacation where I wasn't camping but doing a lot and had a flare up. had to go up to 9 and now back to 8. I would say if you want to go take it easy and just remember you may suffer a little after but if it is something you really want to do go for it, if not then just say so. I don't try and keep up with people any more if I can do it I do if not I don't.... I wanted to get off of these things or get down to 5 a day but have resigned myself to listening to my body and for me that is 8 mg
Thank you for your reply. Yes I know I shouldn't really be going especially now as I also have piriformus syndrome also. Fortunately having put my steroids back up to 10 mg has helped so much to bring my PMR under control. I have been to my Chiropractor this afternoon which seems to have really helped and I am doing lots of stretches. But I am under no illusion that it will most likely be extremely painful for a couple of hours in the morning. I just don't want to let everyone else down, its as simple as that. Yes, I will suffer for it next week but plan some very quiet times.
It sounds like you have had some set backs too, and it does teach you to listen to your body and take any reduction very slowly. I have learnt so much from this site, although those wise words do sound like they are going to fly out of the window this weekend! Lets hope not, but I am sure I will pay. Like you I will be far more careful before I make plans in the future.
I work as a musician and have had to seriously change how I work and how I prepare for work. I always make plans for things like festivals by leaving it to the very last minute and have yet to cancel work. Last time I went to/played a festival I thought I was only going to turn up for the gig on the Sunday, but ended up being there for 2 days and one night. I needed extra rest before and after, but had great fun. You'll be amazed at how much of a tonic these things can be for us, even though they can be a bit of a trial and in our deepest pain and fatigue they seem an impossibility. Even just the day at a festival can be a good compromise.
Apologies for my delay in replying, I have been at a festival for 4 days, and yes I made it!!! It was so great to get out and about and have fun and let yourself go with the music, I loved it. Camping was really hard getting in and out of the tent, but I slept on a double 4inch memory foam mattress topper folded in half and was fairly comfortable. Yet I did find it tough, but like you say with all the fun going on it didn't seem so bad. Staying at home I'm sure I would have been far more miserable. It took an increase from 6mg back up to 10 to put my flare up back under control, but hey, I would have had to do that anyway. I am absolutely exhausted now but I plan a quiet restful week.
Thank you so much for your message, I really think you understood my dilemma. Like you have said we have to prepare and manage the condition, but it must not take over our lives and stop us from doing the things we love.
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