Well I feel like I am going backwards again. Have been reducing the Pred
since October and now down to 5mgs a day but the pains are back and I am not feeling good. Contacted my GP today but she wants me to have blood test tomorrow to see what is going on before she ups the steroids.
Is this normal for this to happen? Need some of your brilliant advice please. Have had this wretched thing for 17 months now and as it took a year to diagnose I guess I haven't done bad but now I feel about 80 and look about 80!
Sorry to hear you are not feeling so good at the moment :cry: .
I have had PMR since late March last year and have just got down to 11mgs of pred after a couple of blips where I had to increase my dosage as I had increased pain and stiffness .
I know it is very frustrating....but there are no rules with this illness and we all seem to follow a different path :roll: .
Have you had any other illness or stressful situation recently, as any other upset can impact on the PMR, as can weather factors...I am MUCH better in a warmer climate :wink:
The other ladies on here with more experience than me will, I'm sure, be along with further encouragement...but for the meantime, just try to get as much rest as possible and give yourself a chance to get \"back on track\".
Yes this kind of flare up is quite common Im afraid
With my first bout of PMR I was quite ignorant of the illness and luckily for me I went from 20mg to 1mg in 12 months with no problems at all and was on a maintenance dose for 12months of 1mg
Unfortunately it came back 3 years later and it is lucky I found this site as it has been a roller coaster !!
I went from 20mg to 4mg in 14 months but with more ups and downs in the bloods and more aches than before In the Dec I went up to 5 as I was abroad for Xmas and all the travelling etc In Jan pain was increasing and I was slowly going up but when I saw the Dr with bloods she said I think you will need 15 to sort this out and she was right I didnt feel great all through Jan and Feb last year Freezing weather listless tired fed up !! It was March before I picked up a bit
I have now got to 3mg (just ) and am mostly feeling pretty good started to do exercise to sort the muscles out I have my own funny reduction prog going at the moment which is taking 8 weeks to go down .5 of mg !!
I might try doing it in 6 weeks if my bloods are good this time I am now 2yrs 5mths down the line and I know there are others on here that these blips have happened to
I got very down when this happened to me last year partly because I expected the 2nd bout to follow the 1st bout but it hasnt So dont panic you can get there but I know how disheartening it is as with me 12months reductions disapeared in about a week !!
It might just need a different approach to your reductions I know some people stick on a dose for a month say to stabilise then start again wheras I have chosen the stealth route so slight the PMR wont notice !!
Best wishes and I hope it is a minor flareup in your case
Labrador lover: yes - very normal , I'm afraid. If you have pain at 5mg it's most likely because the dose is too low for you at the moment. It may be that you are having a flare, or it may simply be that you just need a bit more to deal with the inflammation. Despite the belief of many doctors that PMR \"burns itself out\" in a couple of years, this is far from being the case for many people. The idea is to find a dose of pred that controls the inflammation - and you may take a very much longer time to get off the steroids altogether. You can then get off the pred if and when the PMR decides to go into remission. It isn't simply a case of treating the inflammation and then reducing the pred gradually until you stop taking it which is what happens with other diseases treated with pred.
Did you have abnormal blood tests when you were first diagnosed? Not everyone gets higher blood readings when they have a flare - I suppose you could say the luckier ones do, at least their doctors don't argue about it! I've never had a raised ESR (it varies between 4 and 7!) and my CRP is always also absolutely normal. The only true judge of the right dose is how you feel - if you feel reasonably good, you are on the right dose. if the pain comes back if you haven't tried to reduce the dose, it's probably a flare and if it comes back when you try to reduce the dose and then gets steadily worse, the dose is too low. If there is some pain when you reduce the dose for a few days and then it improves, then you can say it was just the dose reduction.
Unfortunately, with this illness, you never know from one day to the next how you are going to feel and, as most of us don't look ill unless in the throes of a severe flare....no-one else realizes the pain that we are in :cry:
I met a friend that I had not seen for several months yesterday as she has been away on a sabbattical in Spain....for the first time some-one said to me....yes...you look well..but how are you feeling???
Why is she SO different.???...because her sister has Lupus & she knows very well that looking fine does not equate to feeling fine :wink:.
I managed 18 holes of golf for the first time this year today, albeit in my trusty buggy (which the lovely guys in my club do not charge me for because of my PMR) and I really enjoyed getting out in the fresh air with my friends....but also realized that I am no-where near being able to do it without the buggy yet .
However...I will settle for being able to get out at all as this time last year I thought I would never play again :roll: :cry:
Small steps they may be...but at least they are steps in the right direction, and although we would all love to be able to do more, this illnesss has a mind of its own and we have little say in how long or short our individual journeys will be
I have started to recall a mantra oft repeated to me as a child by my late Dad.
\" Patience is a virtue, have it if you can. Seldom in a woman...never in a man\".....
I am slowly but surely learning to be more patient and do what I can, when I can....not easy but necessary :wink:
Thank you so much to Mrs G and Eileen H for your replies. It is very comforting and helpful to hear from other sufferers who understand exactly what you are going through.
Also to Pauline who asked if I had any upsets etc recently and yes I have lost two dear friends of mine in the last couple of months. I must admit this I hadn't put any mind to affecting the PMR so thats also food for thought.
This morning I have walked around a field with my puppy labrador which was nice as it's such a beautiful day here although I do feel depleted now though.
Well as you say we just have to go with it. I don't think other people know just how debilitating this thing is.
I am sorry to hear that you lost two friends, and the stress that this will have caused you, even without you being aware of it, can have impacted on your PMR.
It is hard enough to cope with bereavement when you are well & healthy :cry: , so give yourself a chance to grieve for them, as the loss of a friend is a very difficult time and good friends are hard to come by
Thankfully, the weather has improved a lot in the last week, so hopefully you can get out a little more with your dog....just take it easy, as my family had a Labrador when I was younger, and they can be a bit over-enthusiastic when it comes to walkies....more like a head long gallop :roll: :lol:
Hope you enjoy the rest of the weekend and your pain subsides a bit.
Hallo LL Hope you don't mind the abbreviation. I'm a Great Dane lover ( well, all dogs really ). How I envy you your puppy.
Reading the other replies you have had you will know that you are not alone as the video says. It's not even safe to have expectations based on your own past experience. There can be man ( woman) traps all along the way. But there are also the days when you wil surprise yourself.
Has someone else said to keep a PMR diary? Like Mrs. G, I also am on this not so merry-go-round for the second time and I have found my records very useful, particularly my comments about the reactions to reductions. Sometimes all ok and others, for no apparent reason, a real kick in the teeth and then you read on and find it all worked out better further down the line.
Do you have a pill cutter? ( No use if you are on the coated preds ) but invaluable when you need to make very small reductions. You can get them at Boots. Some people find it is ok to alternate doses instead of cutting the pills but I have not found that this works for me.I am at present on 5.5 and had been reducing ( from 15 ) at 0.5 a month but I am now finding that I need longer at each level and I believe this is not unusual. My doctor listens to me ( and I to him! ) and does not try to rush me which is a big help. Last thing you need is to have to fight the profession as well as the illness.
I don't think I've added anything much but just wanted to say hallo and good luck.
Good morning everyone ! The sun is out again ! Went through a bout of depression, had a good cry and feel much better.... :roll: So, having taken 6mg Preds for several weeks, I am thinking of starting reducing
from tomorrow, Monday. I think I shall take 5mg for the one day and then 6mg for the rest of the week. Next Monday and Tuesday, if all is well, I shall take 5mg for the two days, and then take 6mg for the rest of the week. I shall carry on reducing one day more every week, until I get to 5mg for the whole of the final week. If all goes well, I shall be quite pleased ! :?: It will be interesting to see if it can be done ? Had a short walk yesterday, and my legs were a bit lacking in \"horse power...\"I kept stopping several times, and poor husband kept doing the same.....with his shopping trolley.....(not an escaletor in sight....)only a fair slope to climb so we could get home....He grumbles that the slope seems to be getting steeper .....Have appointment to go to Physeotherapist for my bad shoulder. Hope it can be resolved. Love to all. Granny Moss :artist: :rose:
Amazing what a good cry will do isn't it :lol: , I had lots of good weeps in the early days. So pleased you feel up to reducing from 6mg :D . Are you out of pain now? Just a suggestion, why don't you dip you toe in the water (so to speak) by going down to 5.5mgs tomorrow then back to 6mgs for the rest of the week, then next week do 5.5mgs Monday and 5mgs on maybe Thursday. If you don't have any 2.5mg tablets or can't cut one of those squiggy little 1mg ones in half, I would certainly suggest that next week you do the drop to 5mg on the Monday and Thursday, just to space it out and try to trick your body into not noticing the drop :wink: ! Its working for me, I've been doing this routine since starting the drop from 10mgs and so far I haven't had any problems. No sun here in Basingstoke! Take care,
Hello all, just to let you know my GP phoned this morning to tell me my ESR had gone back up to 8 from 1.4 so I have to go back to 10mgs a day for two days then 9mgs for two days and decrease down to 5mgs again and see what happens. This is like being on a roller coaster isn't it! oh well happy days.