Me again, feeling a bit sorry for myself and a bit whingy. I was so elated after my first few doses of pred, with how the stiffness magically disappeared and the majority of the pain too. Silly me, lulled into a sense if false security, went mad doing chores and I feel like I'm back at square one. My arms feel incredibly sore, and today I just feel so ill. I wish the doctor had warned me to be careful and not to over-do things just because I felt better. I found out too late from you good people the truth. I feel so low today, very frustrated. I just want to get over this relapse, if that's what it is, but it seems to be taking so long. I started on my second attempt at tapering today from 30mgs to 25mgs for the next week, then it will be down to 20mgs etc. My next follow-up isn't until 12th May, so I'm hoping I won't encounter any issues before then. I'm really sorry for moaning, but I just feel all at sea at the moment.
Can someone tell me this will improve........? - PMRGCAuk
Can someone tell me this will improve........?
You MUST rest and don't rush at reducing if the pain is still there. You MUST get the inflammation under control. Don't fall into the trap of yoyoing your dose because that just leads to trouble longer term.
Of course you feel ill and frustrated - you are a different person from before PMR and pred DOESN'T put you back there immediately - it may never put you back there if the truth is told. You have to learn a new mind-set in order to manage this illness, pred is just one part of that management programme. It may mean learning to love dust, to getting a "woman what does", to getting a dishwasher, a shower instead of a bath, finding other hobbies. And that is a big mouthful to deal with.
The doctor probably didn't know - I surprised some consultants the other week by telling them that "No, pred does not take away all the pain and stiffness and it doesn't leave you feeling perfectly healthy". These were doctors involved in research about PMR - if they don't know, who does?
Don't apologise for moaning, we've all been there. So we know where you're at when your friends and family haven't a clue. But it WILL get better - just not in days, time in PMR tends to be measured in at least weeks, often months. Pamper yourself for a few weeks - no one would expect you to spring up and rush around after an operation would they? You are poorly for the moment, don't push yourself, learn to say NO and NOT YET.
Couldn't agree more with PMRpro - whatever the Pred does, you are still ill. You have a long-term chronic condition which has to be managed and too many doctors still can't see this. It will improve, just not yet and you have to learn to pace yourself (start counting now how many times we mention 'pacing' it gets repeated over and over again). It can be a very steep learning curve for most PMR patients, so be kind to yourself.
Hi mama1207 ..I really feel for you and know how frustrated you can get. This condition is horrible and likes rest and pacing yourself . Not always possible around a day to day routine.. I had a flare- up/ virus back in February when I was reducing comfortably on Prednisolone and I had to go back up on them to 17.05 /18mg to get relief from the pain. I am now on 17 mg but still feeling awful although I am getting a little stronger. It sounds like your 5mg drops are too much as I know with me a half a mg makes a big difference to my body re pain and exhaustion.. I have been on the PMR Rollercoaster for 10 years and the Medical team just don't want to know. I only have to mention pain connected to PMR and they don't want to know. I try to pace myself during the day to fit in an afternoon rest so as I can get on with what's left of the day. I hope your flare settles down soon and you know that there are many more of us knowing what you are going through. Bestnwishs trish29
Thank you trish29. I can't get over the fact that help and support from the medical profession is so scant and sketchy. It's not as if, from what I have read, PMR is an incredibly rare disease. I understand that it is more rare in people under 50, but I'm gleaning from this forum that there are enough of us. I know i'll get there in the end, just not as quickly as my gp would have me believe!! I mean, a six week tapering schedule, when some of you have been on maintenance doses for a decade!!
Hi again mamma1207 .After going to and fro to my Medical Practice since February with symptoms on top of the PMR that I didn't understand I came away feeling like a Hypercondriac and the look on the face of my GP was .. Oh not her again .. When I said my pain was different to normal and it was moving around my body he said ..we aren't here to talk about your pain ?? They thought I had shingles and my pain level was awful but it appeared it was connected to the Virus. As you say we get comfort from others on the Forum . I certainly learnt a lot when I was ILL. Maybe 1 day there will be an answer to it all and my body will let me reduce the steroids even further . lts not for want of trying . good luck and I hope tomorrows a better day for you . just try and rest and let the Dust build up My luxury is a lovely lady that comes and does for me and yes I feel guilty that I can't get around to all my jobs. trish
Thank you again trish29 - my gp (my named one, not the locum who diagnosed pmr) refuses to believe I have it, saying my pain is due to my fibromyalgia.........and this after every time I saw her would query THAT diagnosis!! Fibromyalgia pain is nothing compared to PMR pain - fibro pain waxes wanes but this is pretty incessant at the moment. And it's so much deeper than the aches you get with fibromyalgia - this is full on pain isn't it? Not just a little niggle. I'm a fighter though, and I will do whatever it takes to improve my situation, and I will rest, rest, rest, because I now realise that if I don't I won't improve at all. God bless xx
I'm so Pleased that I have someone that understands . Yes the PMR pain is as you describe it and I constantly get ..I'm sure you are confusing your pain , but I know my PMR pain and I know what to take to help it . It was mentioned sometime ago that I could have some Fibromyalgia in my body but nothing came of it ..no tests were suggested . The answer is Just Get On With It ..try and cope and look after ourselves .. Since my Virus I have had a new problem of struggling to get my head off the pillow in the mornings . The Head hurts and feels like a sack of potatoes until I can get my Blood Pressure tablet in me and then it eases off. I am petrified to book yet another appointment with my gp and hope it will ease off. God Bless you to . trish xx
Hello Mama
I'm feeling a little concerned that in spite of you mentioning feeling "so ill today with incredibly sore arms", you have also today tapered from 30 to 25mgs. It is always preferable when having a bad day to postpone any planned reductions until you feel better, even if you feel your increased pain is down to "going mad doing chores" the previous day! As the others have said, it's really essential to pace ourselves and give ourselves plenty of TLC to allow the steroids to do their job of getting and maintaining control of the inflammation, always remembering that they are not curing the illness but purely treating the inflammation which causes the symptoms. I do so hope that tomorrow dawns a better day for you.
Hello Celtic. When I go back to the gp's I am going to take a print-out of the tapering schedule with me in large print!!!! Hopefully then he will put me on something more sensible as is recommended by the author. I know the six week taper schedule I've been put on is ludicrous, but I was initially put on an 18 day one to go from 30mg to 0mg!!! How crazy is that? I'm taking your advice, and that from others of you, and sticking to the 30mgs until my next follow-up on 12th May. Thank you for your care and support.
A 6-week pred taper is useless in PMR - it is a chronic illness that requires pred for at least 2 years and there is so much medical literature out there saying just that. I don't understand why your GP can't look it up instead of being pig-headed!
Well, I've printed off the tapering guidelines like you recommended so when I go back I will wave it under his nose. In my experience gp's HATE it when you do this sort of thing, but if they were in our shoes you can bet your bottom dollar they'd want to find out as much as they possibly could about their condition! I also think that because I am under 50 it's assumed that I'll 'get over it' quicker than someone in her 70's or 80's, but I have read several reports that it can take a bit longer for us to stabilize.
No stiffness today, aches and pains aren't as intense either, I just feel.........really ill. I'm just so glad I found this forum, it's a Godsend. Thank you PMRpro.
Yes - if the dose you are on is not controlling the PMR symptoms well there is absolutely no point at all in trying to reduce the dose - you won't have ANY idea what is causing the pain. In fairness, 30 and 25mg should be controlling PMR pain - but even at that level you have to give the top dose a chance to control it all and it can't do that overnight for anyone. Even my magic response to 15mg in 6 hours left a lot of bursitis pain that took months to fade - even a local cortisone injection can take a week, oral doses take longer.
Hi PMRpro. I think there are two reasons why I haven't yet managed to get this under control yet - first is that, because I hadn't a clue, I started to feel soooo much better I acted as if I was well and did housework etc on two occasions, and also I have followed the too-rapid tapering schedule from the gp. I am going to stick to the 30mgs until my follow-up, and when I go back I'm taking the print-out of the recommended tapering schedule with me. I know I'll get there in the end, and all of you here are a blessing. Being able to ask questions and get answers from fellow sufferers is invaluable, and I thank you all.
Hello again Mamma
If you haven't already been given a Vitamin D blood test, do ask your GP for one as deficiency can lead to pains in similar areas as those of PMR. Many of us have been found to be deficient and it is easily corrected with a 3-month course of pure Vit D3.
I know this is an old post but I can see that your GP gave you a TRIAL OF STEROIDS. That involves going from 30mg to zero in a month. It is used in asthma and some other diseases to see if steroids are useful. The thing with PMR is that steroids are magical. I was better within hours of starting 15mgs. So it was a diagnostic trial your GP was doing. The result was clearly positive - steroids made you better. Don't think your Dr is useless- he/she just didn't communicate too clearly with you. Hope all is well now and that you are on a dose that treats your symptoms. That's all we can ask. Xx
Thank you Saxjody, I am now down to 15mg and will be following the recommended tapering programme recommended.........hopefully. I say hopefully because my GP changes his mind at the drop of a hat. Because I already have fibromyalgia he keeps saying my problem could be that, but I know for a fact that fibro does not respond to steroids in any way. I've been referred to a rheumatologist now as I am atypical having negative bloods and being 49, just waiting for an appointment. As you say, as long as our symptoms are treated we can ask for no more. Take care xx
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