Came off steroids too quickly??
Posted , 6 users are following.
I am 56 yrs and was diagnosed with PMR 2 years ago in May. I had been complaining to my GP that I kept hurting all over, and then had areas of \"sore\" skin. It might be the top of my back for a few days, then it would be the outside of my thigh for a week or two, then my buttock area - always moving around. I finally was referred to a consultant when I could hardly lift my leg to put my trousers on! My husband used to remove my shoes at the end of the day because I couldn't bend to reach. Getting in or out of the car was a nightmare, and I panicked badly when I was in the middle of town shopping, and suddenly felt like I could not move another step. I did get home but it frightened me. Another time I squatted down to talk to my grandson and then could not push myself back up to a standing position without help. I was not sleeping paticularly well, waking at around 2am every day and then not realy going back to sleep properly - cat-napping and experiencing extremely vivid dreams was how I spent my night! I can't say I felt particularly tired the next day though. I had my thyroid zapped and take thyroxin for about 16 years, together with 2 blood pressure medications (one of which was Amlodopine).
Anyway, the consultant did blood tests which were normal (ESR 11 from 44, some 3 months earlier), and RA was negative. I was started on 15mg prednisolone and three days later could have climbed Everest!! After 6 weeks I was brought down to 10mg and was then to reduce 1mg every 6 weeks. By 7mg the heartburn was so severe I thought I had had a heart attack! I was allowed to jump to 5mg so that I could take a coated gastro-resistant pill. Each time I reduced, I experienced some aches and pains but worst of all was emotional and tearful spells, crying on and off for 2-3 days. After a week or so, this always settled and I got over these spells. Down to 2.5mg, I asked if I could come right off, as my hair was going through phases of falling out, my eyes were uncomfortable and the night sweats were unbearable. He agreed that I try. Even at 2.5mg, at least my chubby face slimmed down and I lost a stone in weight (I actually put 2st on - mainly around the facial area and middle - I am unsure how much was also due to middle age spread, menopause and total lack of exercise?)
I think on hindsight I jumped from 2.5mg to 2mg, and then to 1mg too quickly. I alternated two days of 2mg, one day of 1mg for almost two weeks and then 1mg for two days and none for one day for only about a week, and finally stopped altogther on 24 February. Almost at the same time I suffered a viral infection with a bad chest, cough etc and had two lots of antibiotics. I expected the pain flare as usual as this had been gently ticking along all the time of reducing, but was bearable. This has gradually built now into different symptoms - while I had pain in my upper arms at diagnosis, the pain is now such that carrying a bag far is tiring; my shoulders are painful, my neck is stiff, my knees kill me at night some times, some days my wrists hurt, some days my feet, every day the muscles in my upper front thigh are so painful that I avoid sitting in a low chair as I know it will hurt to get up. My buttocks feel as though a horse has kicked me. The funny thing is, the worst symptom at diagnosis was not being able to get my foot up to put my socks/trousers on, but that is not so troublesome now. Going up or down stairs is just awful as the pain in my front thighs is so bad. Some days my fingers hurt and other days I feel burning and stabbing sensations in my buttocks and lower back. I have phases of pins and needles in my hands and arms at night, and sometimes my legs are really painful and cause me to have to \"stretch\" (like a cat), while in bed at night - it is a strange feeling of almost a tingle all over, which then goes after stretching. Then, on another day I get up and wonder what has happened as I don't feel so bad.
I now cannot drop off to sleep and spend the night in such intense thought and dreams, it seems so many of them, so I must be cat-napping, and some dreams just so bizarre. I felt sickness on and off for weeks but this has almost stopped thank goodness. I have had numerous bouts of heartburn and take Gaviscon, as I struggle with Omeprazole. My hair is still falling but no bald patches just thinned quite a bit. I have spent the last couple of weeks feeling as though something awful will happen, I have been extremely tearful and feel continually plotting \"some plot\". The last straw today was the cat catching a mouse - and a flood of tears for the poor little thing, and what if it had babies, etc etc! I have a fairly responsible job and have always been a good multi-tasker, but actually cannot cope with one task at work at present. I feel continually overwhelmed, and with some job changes looming don't actually know what I will do if I get asked to learn anything new! I can't remember names, forget what I am saying in the middle of a sentence and worry what everyone is thinking.
I have seen my GP, asked for an ESR to be done with my 6monthly thyroid test, and have asked what best dose of steroid I should take again. I see the consultant in late May. I have been off treatment for almost 2 months and feel as though I have put myself back two years - I think that remaining on 2.5mg may have just kept things at bay and bearable for me, and therefore have gone back onto 2.5mg starting today!! When I see the consultant I should be in a position to tell him my ESR (remember I had no problem with that at diagnosis), and will know how the steroids are affecting me after taking them again for approx one month.
Perhaps I am one of those who will need to stay on low dose for some time - all I know is, this whole thing is getting on my nerves! I don't really want to take steroids for ever more, I am fed up with this constant pain presenting somewhere different in my body all the time. I'd like to go to bed and sleep the night and get up without shuffling for the first dzen steps to loosen up.
I'll let you know what my consultant says next month, and also if I feel any better in a few days - which might just prove a point if I do.
0 likes, 11 replies
MrsO-UK_Surrey
Posted
You mentioned having had blood tests at the outset and then again recently but haven't said whether you have continued to have the tests during your later reductions. It is generally recommended that once we reach 5mgs we stay on each 1mg reducing dose for about 3 months. If there is any return of pain a blood test will confirm whether the inflammation markers have again increased necessitating an increase in the dose.
With regard to your problems with Omeprazole, have you tried eating a live yoghurt immediately prior to taking Prednisolone? I was unable to tolerate either the Omeprazole or Lanaprozole and very quickly gave up on them in favour of the live yoghurt and 3+ years later that seems to have done the job!
I do so sympathise with you and I know that almost everyone participating in this forum will have experienced some or all of the very same symptoms you describe. Unfortunately, it is not an easy journey once diagnosed with PMR, aggravated by the very thing that is given to help us....steroids! But, without which, many of us would be confined to our beds.
I hope that following your blood test results, your GP/Consultant will prescribe the most suitable dose for you, as I'm not sure that 2.5 will be sufficient enough to stabilise your symptoms having been off steroids for 2 months, but you never know - everyone is different - and I send you my very best wishes.
MrsO
Guest
Posted
cheers margaret edwards;
Mrs_G
Posted
I ( luckily ) seem to manage well on steroids apart from weight gain I have been taking Actimel each day because of the weekly bone drug and calcium etc in case anything was going to irritate my stomach
I have had PMR twice now and the first time I was on a maintenance of Img for the 2nd year and I think you are right about coming off too quickly This time around I have had as roller coaster and got from 20mg to 4mg in 14mths then had to go back to 15mg !! I am now on 10mg and I am going to chat to my Dr about a very gradual reduction ( described by Lizzie Ellen I think ) to 5mg and then possibly alternate day therapy to get my own adrenal glands working
If you have other health problems it must be difficult with other medication but have you looked at what you are eating to see if it is certain foods that are incompatable with the steroids My Dr is off the opinion to zap the PMR when it returns at a higher dose straight away as she doesent think it gets better on its own and of course the pain drags you down then you catch other infections and the cortisol is fighting off the other infection and the PMR suffers Vicious circle !! I was talking to someone who has Vasculitus who had been doing wonderfully well and catching a viral infection on holiday has set him back a year ( I could tell by his moon face that had reapeared when I saw him )
I have always ( in both bouts) been given at least 2 monthly blood tests with the offer of monthly if I feel I need it and as my blood results have never been high I need to be under 5 on both to be feeling OK
Im sorry I cant give you real help and advice as I have no understanding of your other health problems With the sleeping I ( if Im not sleeping well)
I take the Nytol one a night ( on pharmacists counter) and that helps I have certainly found that since I have had this I dont seem to cope with any stress any more and seem to worrry about anything which is totally unlike me
Best wishes keep on the forum and make sure your Dr knows how low you are feeling Mrs G
mariannie
Posted
You ask about blood tests - as my ESR was okay when I saw the consultant, it has never been checked again! Last week when I asked me GP to do the test along with my usual fasting glucose, cholesterol, liver function, thyroid etc, he said it did not really mean much so didn't think it worth doing. I think he sensed (!) my irritation and it has been done!! I have another appointment with a different GP in the practice in a week.
My consultant is of the opinion to reduce steadily and come off sooner rather than later, but said that if I need to stay at 2.5mg it is a low enough dose to be acceptable. 2.5mg does not keep me pain free, but bearable. I think I need to accept that I have this illness, and get myself back on track. I really think having the menopause at the same time has not been the most helpful thing in the world! Trouble is, depression, flushes, weight gain all go hand in hand with the same things steroids do to you!
After posting my experience yesterday, I had a look at steroid withdrawal on the net, and am pretty sure that is what the problem is. My emotions are better today and I puzzle as to WHY I was so upset - but isn't that the case, once you have had tears and totally let it all out, you almost wonder what the problem was?!
I do know certain things will increase the heartburn and try hard to avoid very acidic things - no orange juice, watch spicy stuff etc. I used to be rather heavy on alcohol but have cut that right back, so am doing all the right moves to help myself.
I'm really disappointed that I have had to go back onto the steroid - I feel like I'm out of control. I felt like that when I had to take thyroid tablets when I first had radioactive treatment that totally zapped an overactive gland. Of course I don't think twice about it now, just taking the pills in the way you would clean your teeth or eat breakfast!! The consultant said that he was confident that PMR would burn out but didn't know if it would take 2 years or ten!! If 2.5mg gets me back to the bearable pain I had before, then I will settle for that. I reall cannot cope with going higher and putting weight on (don't think I am a skinny, I am over 15st now after a 1st loss) and getting sweats again.
Anyway today, I feel a little headachey but my pain is no worse no better yet. Fingers crossed that tomorrow it may be a bit improved .....
MrsO-UK_Surrey
Posted
I'm glad you have cajoled the GP into doing the blood tests especially as they were raised (44) prior to commencing the steroids but had returned to normal by the time you had your first appointment with the consultant. As the pain has now worsened it is possible that the test will again show raised markers.
One more very important point: you mention that you are feeling \"headachey\" today so please bear in mind that there is a linked condition to PMR called GCA (or temporal arteritis). If your head pain worsens or you suddenly develop any jaw pain and/or vision problems, it is most important that you seek urgent medical advice. GCA if untreated can cause irreparable blindness. This condition is a very real possibility if the inflammation is not kept under control by the correct steroid dose. In fact, there is a 7 out of 10 risk of developing GCA in people who do not take steroids when suffering from PMR, as opposed to 3 out of 10 in those people being so treated. I don't wish to sound alarmist but feel that protecting our eyesight is far more precious than the side effects of taking steroids and it is better to be aware.
I do hope you feel better.
MrsO
mariannie
Posted
I had an eye test just before Easter as my eyes at last felt normal after being off steroid, and the optician said my eyes were healthy after giving me a very thorough test because of my history of thyroid eye disease, blood pressure and steroid treatment. New glasses have cost me an arm and leg though!!
Headache has gone naturally without any pills, but I already feel anxious because it will be work again tomorrow. Hope to function a bit better next week! I am determined to get up from my desk more frequently so as not to seize up so often.
EileenH
Posted
If you are feeling apprehensive about being at work - have a look at the final post from Wallis on \"new to this - feeling terrified\" (I hope I've remembered that right! :-) )which says that the disability discrimination regulations are to be considered in PMR as the PMR reuires consideration in the untreated state. This means that you have far more leeway and entitlements as to what you do whilst at work without any prejudice - and that can only be helpful in avoiding stress and restricted movement which will only make you feel even worse.
And can I just say - you are describing things I too felt with PMR, though not quite as bad. The most disabling bit for me (apart from the stairs thing) was the wandering joint pain which made doing anything practical a nightmare! Holding a wine glass was agony!!!!!
all the best for work tomorrow,
EileenH
gill_a
Posted
I started on 20mg as my ESR was 60 and CRP 50. And i also was compleatly manic and totally painfree. Now i feel a little apprehensive that i am never going to be free of the steroids, without gaining the PMR back.
I am feeling dredful fatigue at moment. when i stand up my body feels zapped of all engery. The good news is i have retired and have no mortgage worries.
Hope you have better days soon. Best wishes gill a
EileenH
Posted
I have every sympathy with the way you feel as that was the reaction I had when I finished the course of steroids my consultant condescended to allow me to have until the next appointment: it was 2 weeks each of 15mg/day, 10mg/day, 5mg/day. I was almost completely painfree for the first time for years within 48 hours and it was back within 36 hours of taking the last 5mg tablets. I pulled myself up the stairs and retreated to bed in tears - in the room where my (by then) retired husband was on the computer. For the first time he realised what I had been going through. I immediately took a small dose which relieved the pain as I had a few tablets left. I was absolutely gobsmacked (there is no other word I'm afraid) when the following week the consultant refused to listen to my story and wanted me to take another drug with horrible side effects as he didn't think it was PMR \"as you're too young\" and it must be some other inflammatory arthritis. The hip pain was excruciating at nights and when trying to walk and the tears were from the pain and frustration at not being able to do anything - no wonder there is \"depressed mood\" with PMR.
I wonder if delayed diagnosis and treatment makes it harder to get the dose down and just one year after diagnosis would be regarded as quite an early stage so don't panic at the thought of not getting the dose down further. Did you have any form of stress that coincided with the last reduction attempt? I'd go back up to the 9mg dose if you were well at that and wait a bit longer before trying another reduction - and then try reducing the dose on one day the first week with the other days at the higher dose, then 2 days spaced over the second week and so on - other people have posted about this absolutely minimal reduction which seems to have some promise.
That said - I'm on the equivalent of 6.5mg/day 8 months after starting at 15mg. I say the equivalent as I swapped to taking double the dose on alternate days (at the time 15mg every other day) at the end of February and have been able to go down by 0.5mg steps every few weeks since then. After about 2 weeks on 13mg/2 days I have a little bit of stiffness in my back on the second morning before taking the next dose and until early afternoon and some very slight joint pain in my hands. But still livable with at present. I'm just waiting to see if it calms down with the warmer weather although I do note I'm going to have to find enjoyable exercise now I can't go skiing any more as the movement with skiing was obviously just the right sort to loosen up the muscles!!!
Good luck, keep in touch,
EileenH
mariannie
Posted
The emotional bit is another story. When I wrote saturday, I had sniffled over the mouse. Sunday was not quite so tender, monday was bearable, and then by Tuesday I was back to really tearful and such a dreadful feeling of hopelessness. I was given some work to do for the future project, and just could not express my views about it and ended up being tearful, angry and soooo over the top in my emotional behaviour. Today I asked to take some holiday because I ended up being tearful again. MY boss was kind and suggested I might want to take sick leave - something I rarely do - I've only had 7 days off in about 2 + years, and that was not related to this illness. I see the GP next week so will discuss it with him. Mind you, I hope to goodness I have improved by then!
I think it is worth perservering for a few weeks when you come down - every half mg gave me a little flare or exacerbated pain, but it settled. I also had some tearful episodes, but that again had settled with me.
Anyway, I have no doubt that I messed up totally by stopping the steroid - if I had stayed on the low dose I am sure I would not have had this crisis. I went from the 2.5mg to 2mg okay, and then to 1m - my GP had said there was no need to do half a mg at a time because I was so low. I personally now think it worth negotiating and asking to come down half at a time - I believe some of us are slightly more sensitive to the side effects than others. I only have another month then I see the consultant and so will go over things with him again. All I know is, the pain is certainly more bearable with the steroid.
Gill - if I were in your shoes (meaning being back in february when I wanted to get off) - I would stick with half mg at a time, and go back up half a mg if after about 3 weeks things had not panned out and settled to being more bearable. You start to know what works for you - and I can see that now, and have learned a lesson I think. I know the emotional side effects and the manic bit are hard to cope with, but now my pain has gone off from being like the intensity you describe and are feeling, I am almost \"pleased\" that I can get the relief. I wasn't happy continually taking paracetomol and could not tolerate Ibobrufen etc.
Just hope to get over my hormone crisis soon!!
mariannie
Posted
Last night I felt pain again in my knees and one hip, and when I got up at 5.30 to take paracetomol I found it was raining. The weather does seem to have quite an effect on how my pain presents.
Yesterday in the sun I felt like a lamb frollicking around! Today has been cooler and fairly drab, and I still am reasonably okay - rising from a chair has not caused me too much problem and walking around has been pretty comfortable, but lying in bed does seem a trigger and I am hoping that nothing will get worse, as I do not want to increase if I can possibly avoid it. If things remain as they are now I will be so pleased as I really do feel more comfortable that I have for ages. Just over a week ago, I was in so much pain I could barely walk when rising from a chair and stairs were something to avoid. This is why some doctors rely on diagnosing PMR if there is a response to steroid.
I see my doctor early in the week and I plan to discuss my blood tests. I am going to remain on this 2.5mg regime until I see the consultant in May, and am going to ask if there is a problem remaining at this dose. If the pain stays like it is now I think I would like to stay feeling well while I have my annual holiday, so that it is not ruined again - my husband spent most of the last two years walking on his own, with me just managing a short walk on the flat. I need to re-assess the calcium tablets as I have not taken those for over a year. I also need to discuss the emotional aspect - the last two weeks I was unable to function or cope with my job, and was tearful over everything. I feel much better the last day or two, but am still reeling a little from the intensity of my emotional outburst and am quite upset by it. A young lady in the next office has had steroid treatment for Crohns and she said that she went \"doo-lally\" while taking steroid!!
I think after this relapse that I am re-evaluating the situation and realise that I cannot spend my life in this terrible pain, but equally, do not want to become emotionally or \"mentally\" unwell. Perhaps a talk with the Gp about the possibility of suffering depression?? I don't know too much about depression but it does seem to go hand in hand with this illness.