Hi all, I have been on 20mg for a few weeks now and I feel quite good. I do have a little stiffness in my neck but nothing drastic. My doc just rang me and has had word that my rheumy app is not until end of Oct. Anyway he has suggested doing 20mg one day then 15mg next then 20mg next and alternate like that for a week to ten days. If I feel a flare coming on then stick with 20mg but if ok after 10 days then 15mg per day but he wants me to go see him next week. I can't tell you how I trust this doc he is amazing.
So here goes, I will let you know how I am.
Keep smiling
Sue
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Sue8
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When reducing Pred, are the symptons you can get (aches, stiffness) due to withdrawing the drug or are they PMR symptoms popping up due to inflammation?
And when you talk about 'flare' is this about PMR symps or Pred withdrawal.
Flare to me and my doc is the PMR symtoms returning upon recuction of pred so it's no longer under control. Though some people do get symptoms when reducing that go away after a couple of days when they are used to lower dose.
It is quite common for aches and pains to return following a reduction in steroid dose and then gradually start to subside after about 1-2 weeks - known as steroid withdrawal pain. However, if the aches/pains start a few days after reduction and then continue building up, then it is a sign of increasing inflammation - a flare. If in doubt and if you are one of of those people who had raised blood test markers at the outset, then a repeat of the blood tests will generally provide the answer as to whether it is an actual flare or just temporary withdrawal pain.
Good. Corralie put the question I was about to post, and Celtic gave the needed reply which has been floating around in my thoughts for a week. After having to go up 5mgs pred, after 6 weeks I am currently supposed to be making the jump from 12.5 to 10 but have no confidence that my arms will not act up again, so coming down rather more slowly than the hospital advised me to.
I have been trying to work out out if stress plays a part in PMR for me. My treasured little sausage dog will not be too long in reaching his natural end, and its clear that this, although giving heartache, does not give me PMR pain. What definitely causes me to have sore arms in addition to noisy/painful neck and stiffness in shoulders is 1) overactivity and 2) wrong eating. I am now a sugar free zone, and heavens this was SO hard, but I did it!! Too much food (I am not a full time glutton but will occasionally binge on something I like) and I wake up with some pain and I sweat considerably. Eat sparingly and I am fine. For sure - this is absolutely the case with me. Gave up wine for 5 months while PMR was giving me flu-like symptoms and I was feeling really not well and dismal and suffered from zero energy. Began to feel better and (six months off wine) tried one 125 ml glass - fine. Next night had two, carefully measured, and woke up with pain again the following day. Maybe sulphites in the wine or something. So I'll just stay off it unless there's champagne at a wedding maybe and I'll have one glass. It sure has been a time of self discovery and one of the best ones is that friends tell me I look really healthy - I can see this too - and I tell them its because I am having to eat very healthily. It truly makes the PMR better to eat properly. Despite the proper eating I am still putting up weight and developing doggy dewlaps, light sideburns and a double chin.... DRAT. Arms have been so bad I am only just beginning the exercise I urgently require, having had a second coronary stent last year, and I can truthfully tell you - stenting is an easy walk in the park compared with PMR. But I am more optimistic altogether and getting some knowledge is half the battle. I keep hearing of more women I know slightly who have been diagnosed. A lot of it about. I am really grateful that I found this site and send grateful thanks to all of you men and women who contribute. Best of luck Sue!
So well done, you've cut out the baddies from you diet. You're right, sugar does cause inflammation, certainly in my body. Not eating before you go to bed is also important even for healthy folks. For me wine does not cause pain and I sleep so much better after a couple of glasses of red, but I think it's the amount of water I drink which conteracts the effects of alcohol. The hang over effects of wine could be caused by dehydration. I drink 3 to 4 pints of water a day, apart from the tea I also drink. I always drink plenty of water before I have any alcohol and I wake up feeling fine. Water also helps to get rid of some of the baddies that cause us to store fluid. I know that it sounds back to front, but it works for me.
I could only come down by 1mg at a time on your dose, but it worked. I still got side effects but I could cope. I'm now on 7mg, reducing by half a mg every 3 to 4 weeks. Slowly but surely. My rheumy will just have to lump it.
I also know of lots of people with PMR in the area where I live. Not a rare illness at all, is it?
At the moment my eldest daughter is rather ill. In lots of pain and having tests. Her GP thinks she may have fibromyalgia. Poor lass, she struggles as it is. On her own with two girls. As you can imagine, I'm very worried about her.
Well I can tell I dropped 5mg yesterday. My neck was hurting before I went to bed last night and I have had a very restless night altogether. My shoulders and tops of my arms and my hips and knees were all painful and very stiff. Just waiting for my breakfast so I can have my 20mg today. Will stick it out for the week unless the pain stays then I will be back to 20mg daily. I am going to take the naproxen also this morning to help with the lowering of pred.
Just to add to trishyb's post, it is very wise to only make a reduction in the steroid dose when you can clear the decks for a week or so - the body will then be better able to cope with the withdrawal, so lots of rest and TLC!
I couldn't agree more with Janimaths post - reducing sugar intake will lessen the stress on the adrenal glands which are already compromised by the steroids (coffee is another one to reduce/avoid). I had a similar experience in discovering that my diet was so important during my steroid days, for instance if I veered off the anti-inflammatory foods for a while, such as oily fish, my discomfort would worsen, and then when I introduced them again, things would improve. This sensible eating doesn't cure PMR or GCA, of course, but it can certainly ease the pain along the way.
Best of luck on the drop. You could try a 2.5mg drop rather than a whole 5? Sometimes that works better for people. 18 months in with PMR and I know all too well that it is different strokes for different folks. Rather than alternating you could also try doing 20,20,15, 20, 20, 15 for a week or two, then trying alternating days.
My reductions went 15, 12.5, 10, 8, 7.5 and 1 mg drops after -- had trouble for several months around 5-7mg but now down to alternating 3 and 2.5 (without that trouble, which seemed related toa separate knee issue made worse by the PMR, not the PMR itself, I'd have been at 1mg I think by now). I only go by half mg drops now. In the 10 and below drops I know to expect some additional pain and especially morning stiffness but after about 2 weeks I wold feel it gradually improve. Tylenol was really helpful and maybe an ibuprofen if really sore (with OK of rheumy).
The pains are so similar between pred withdrawal and PMR pain that I was never sure which was which.
It is much better to be up and moving than to sit through the whole stretch of morning stiffness -- stiffness is def worse from sitting still.
I think we all have this confusion about what exactly a flare is as opposed to just some increased pain... what is the definition? To me a flare (and I had one long one) is when you go back to former levels of pain and pred is not managing it at all.
I'm a strong advocate of swimming/aquasize as a major help! I did find that if I walked too much, used my arms for gardening or cycled too much, I could feel it the next day. If I swam, even if a regular fairly active workout, I could do even as much as a mile and pain would actually be almost entirely gone when I got out of the pool (this too before I started on prednisone -- I'd get any hours of feeling normal again). I do not know why the difference but many say gentle aquasize helps far more than walking for PMR... drops became much easier and pain of drops eased once I got back to regular swims (3x weekly). Just one other thing to consider!!
PS Good diet including daily omega 3s -- yes, yes! I also really believe in probiotic drinks. I also like an anti-inflammatory herbal supplement called Zyflamend -- has had good clinical trial results for various things and packs a lot of known anti-inflammatories at concentrated form. I am not big on such things generally but this has some university research behind it for a few inflammatory conditions that look promising.
Hi Jani,
This is adding to the comments I made earlier to you. I'm sorry, but omitted to mention your stress regarding your beloved little dog who you said is not well. I have never had a dog as a pet, but have kept many lovely cats. I took care of them and loved them and, therefore, suffered a great deal when they died. So much so, that when I had Harry, my darling siamese, put to sleep, I vowed that I would never have another cat. I just could not face that sort of trauma again. After about a year, I missed having a pet, and so I thought, I'll get one that I won't get so attached to. I'll get a goldfish. Off to a large garden centre/ pet suppliers near Plymouth 5 and a half years ago. They had every pet fish you could name, but not one single goldfish. "Sorry Dear, we've just sold the last one". As we wondered through the pet dept. on the way out I spotted a large glass case and within a creature that could have come straight out of "Alice in Wonderland". The most beautiful snow white rabbit I had ever seen standing on his hind legs against the glass, begging for attention.
You can guess the rest. We can keep him as a house rabbit I whittered to my reluctant partner. After all I had had many rabbits in the past and they all had been so easy to look after.
You've no doubt seen the film "Curse of - - rabbit". Lewis, as I called him grew to 4 times the size. 19 pounds. With all the attitude of an unneutered buck. As far as he was concerned, he was the boss. We had him doctored for my partner's sake as well as mine. To Lewis, my partner was a rival for my affection.
When I was feeling at my worst on the higher doses of pred and did not want to face the day in the mornings, it was the thought of Lewis downstairs, on his own, that got me out of bed. He was always there, waiting at the door as I opened it, to greet me with soft grunts of joy.
He has become the most demanding pet I have ever owned and I love him to bits.
I guess I really know how you feel. It's never easy! And as for your question, "Does stress make our symptoms worse". Yes, I can honestly say that for me, it certainly does.
You are the wonderful woman whose words first helped to get me off a lifetime of sugar. No kidding. You just quietly spelled it out that it was bad for PMR, and why. And I was brought up next door to a granny who ran a little sweet shop which she had to open to keep her family of 5 going, twins of 9 and three others at 12, 14, and 16, after her husband died in the 20's, and there was no widows benefit. So I have always equated sherbet, toffee apples etc., with family love and being handed down sugar by my gran who spoiled me. I now know to 'treat' myself I stay off it and feel better.
I hear your sadness about your daughter. I often think its worse being a generation above hers as you have three levels of concern - the children, her illness and sole responsibilities, and yours for yourself. Thinking about PMR people I know - we all seem to have more than our fair share of life's knocks. I wonder if they are what kicks off the illness in the first place?
I enjoy your blogs and your flashes of wit added to the words of wisdom. You told of Lewis going for your partner and having to be neutered a couple of months ago and I sat at my PC at 3am having a bigger belly laugh than I've had in ages. Didn't know rabbits could be like that. And what a size! My Paddy weighs in at 9 pounds now from diabetes, although he eats a ton. He might be 12/14 pounds at best as he's a miniature. He has had a great life and I now treat him like a baby as he has gone blind and lost confidence. I saw him become depressed - and recover - in 2 months and thought what a lot we can learn from animal behaviour. He has regained his bright spark and shreiks with joy when friends come in. I just enjoy him 100% while I can.
I am going to a Humanist lecture today given by a woman Professor of Philosophy and will take a notebook in case its very dense..like me, in another sense..
Hi Pats your blog above made me chuckle thank you.
In all seriousness I was in a position just over two years ago where both my beloved parents had passed, the my loyal friend of 16yrs my dog Holly passed, my children either got married or left home for University and my ex husband got himself a new girlfriend. I was steroid dependant depressed on top of bereaved and spiralled downwards while increasing my pred as through stress I was in the midst of a flare.
My children together came up with a plan of getting an assisted dog for me, no I didn't want the hurt again, but low and behold I had a yellow Labrador and to keep it company a jack Russell. These pair have saved me as like you said they are a reason to get up in the morning, to be fed and nutured. I must admit some times I think oh bleeping hell ive got to get up because it hurts but then I am greeted with kisses and warmth and much wagging of the tails then I know it's worth it. They are now joined by a cocker spaniel, a rescue dog that no-one else wanted & I couldnt let down and the trio of hounds are joy to have.
Thank you so much for the comments as day to day problems makes life quite difficult & to have that laugh was wonderful x
Well, you,ve got your own pack! But although they are a responsibility, your dogs obviously give you so much pleasure. Pets can also help take our minds off the great sadnesses we have to bear. The thing we all have with our pets is the unconditional love they give us.
What a roug time youhave been having, I don't understand these letters that says 6 years ago. Am I reading old letters must admit i keep reading these letters. Can you explain. thankyou.
this alternative dose is not working very well. When on the day of 15mg by the end of the day I have pain in my neck and wake the next morning with pain in my shoulders and hips etc. Today I have woke with a lot of stiffness and a lot of pain so had to have the naproxen also. I have a headache also. Hope the pred kicks in soon. I don't know wether to stick it out til Friday when I go to docs or just go back up to 20mg a day.
Sorry you are having a tough time, Sue. It is hard to know --why not try 20 and 17.5? You very often WILL get pain during reductions -- man of us go through this. As others have said, many of us learned we really need to keep about two weeks around a drop clear of much activity. I would be very very stiff and achy for about 2 weeks and that would gradually go. BUT there's no rule that says you must do a 5mg drop -- in your shoes, I'd try a 2.5 drop.
The kind of pain and stiffness you describe sounds pretty normal for a drop, to me. We really generally need to ride these out. For me only when I started at 15mg did the pain entirely go and after I started drops I lived with regular pain as well as morning stiffness, sometimes quite severe. But you do need to work your way down to lower doses of prednisone. Be sure to OK taking naproxen if you haven't as usually doctors want people to avoid taking steroids and NSAIDS together (I used a stomach protector when I was taking both for my nee problems).
Doctors say we should be pain free but I've hard;y encountered anyone through these discussion sites that have had no pain or stiffness!
There is a newly approved form of prednisone taken at night that is time released and seems to be very good at preventing morning stiffness. It has been OKd in the US, not sure where it stands in the UK. It has been successfully trialed for RA and is being trialed for PMR so might be worth asking your doctor about it. Also some people that have had real problems with pain later in the day or morning pain have split their pred dose so they take some in the evening -- not the usual approach but it does work for some people and is worth asking your doctor about. Splitting the dose has really helped a few people with breakthrough pain.
If moving below 20mg is really impossible, I'd definitely go back to talk to your rheumatologist. They may want to consider other possible diagnoses for example.
at the moment I can't drop 2.5mg as only have 5mg tabs. All this pain and stiffness is just like I have suffered for a long time before diagnosis. I have however been pain free for a few weeks hence trying to reduce dose.
As for the Naproxen, my GP gave it to me along with the lansoprazole for my stomach.
I will see how I go for another couple of days.
Hi Sue,
Sorry you're not well again. You seem to be in quite a lot of pain. If I felt like you do, and I have in the past, I would go back up to 20mg And stay there until the pain recedes. Whilst you are waiting for this, get in touch with your GP and ask for some 2.5mg tabs. A 5mg drop is too much, it's 25%. I would try to go to 17.5mg or you could try 18mg, but you'll need 1mg tabs for that. By the way, When coming down from 17.5mg I could only do it 1mg at a time. I still got some side effects, but I managed it.
Pats. ps. see how you go, as we're all different, you might improve in a couple of days. It's never easy for most of us.
on a facebook group for PMR someone suggested getting a pill cutter to cut my 5mg tabs in half. I am not to bad at the minute though my neck is still sore so the pred has kicked in. I think I will do 20mg again tomorrow. Thanks Pats
Sue,
Hope it helps. By the way, you are entitled to 2.5mg tabs. They make the drops so much easier, particularly in the mornings when you have not quite woken up and, lets face it, there could be bits of tabs all over the room!
Steve's suggestion is very useful on the very low doses, i.e. some below 10mg like 3.5mg. To drop precisely we need 5, 2.5 and 1mg tabs. All three combined will make a half a mg reduction so much easier no matter what dose we are on. I found , that it was only below 10mg that I really needed to reduce by half a mg. My rheumy prescribed the 2.5mg tabs. That was after my new GP said he didn't think I had PMR, just a wrench injury.
Morning Pats, I will ask the doc for some 2.5mg when I go. I always have my meds with my breakfast which is a couple of hours after waking. I also have to wait for the lansoprazole as that is on empty tummy then wait 30 - 60 mins before food.
Harley is a beautiful dog and quite well behaved for a pup. We tried to keep him in the kitchen til he was completely house trained but he jumped the 2ft boards in place lol. Saying that he goes in our loung and he does not do anything overnight which is fab. It is lovely to be greeted at 6am with a bushy waggly tail as he is pleased I am up. I love him to bits.
Hi Sue,
Hope you're feeling better today. At least you can pick Harley up at the moment. One of my brothers has a gorgeous GS called Blue.
About the same today Pats but I have been to the chemist and got a pill cutter to last me til I see the doc next week. I am gonna do 17.5mg daily instead of alternating and will see how I go.
Glad to hear your pred doses are reducing. I was on 5mg forever and as I have said before had a non plus Dr who was far from supportive. Well she has now retired and I have a new young Dr who is taking an interest in my health. I had a ERS done and it was 12 so I thought I no longer had PMR and was thrilled so I reduced to 2.5mg of pred . As you can imagine i did not feel well but I was so determined to come off steroids that I endured the pain and disomfort for a short while. I then had to see Dr again and he has put me back up to 10mg -(He wanted me to take 12.5 )and I am coping again.
Thanks to the info from this column I have learned about the Dexa scan (luckily my Dr had no objections to me having one) and I am having it done tomorrow so hopefully my bones will not be in too bad a state. I am babysitting my gorgeous 8 month old first grandson once a week so I need some strength to be able to lift him but he is so worth the pain!!,
Last week I pushed him in the park and my shoulders were very sore the next day. What an awful illness this is when just doing the simplest of things causes so much pain and discomfort
I have took my new puppy a walk to the local chemist this morning and boy did I know it my hips were so sore I have sat down for the rest of the day sewing. But even sewing has caused me pain in the neck. Can't win can we.
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Too little pred or too much gardening?
Thank you! Increase to 20mg Prednisolone.
8 Months On from Positive GCA Biopsy
Recently diagnosed with PMR
