OMG, today is the first day I have had a drop in my pred. Upon waking this morning and before taking any meds I really struggled to get out of bed. Luckily my husband had not left for work so he helped me get to my feet and down the stairs.
Was not to bad for a while so had breakfast and meds.
Gradually through the day my neck has started giving me some jip and my arm has not really woke up. My knees are also sore.
It is now 2.45pm and I feel rough.
Do I assume it is the drop in pred? Gone down from 20mg to 15mg. Or was I having a flare up anyway given not being able to get up.
I have a headache also. I just want to sit and cry to be honest as I have tried and failed at so much today.
Trying to sort my printer to print out all the blue badge docs for my copies and trying to cut out material for PJ's for my 6yr old. Failed at both. I can't even try and pick up the embroidery bag I am doing.
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Sue8
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Difficult to know at this stage whether you are suffering purely from today's steroid withdrawal or whether the quite steep drop from 20 to 15 is really not sufficient to control the inflammation. I would have said stick with it for a few days for confirmation either way but when I read that you have a headache, alarms bell ring, especially as I have had GCA. If the headache is unusual for you, then if it was me I would get it checked out asap. If the headache is easing up, then all well and good, but I think I would be inclined to go back to 17.5 and see if that shows an improvement in your symptoms. You have no need to feel a failure - I know you have a lot on your plate but when I was on the higher doses I was lucky if I tackled just one thing successfully on some days. You need to give yourself lots of tlc at present.
Do hope you feel better tomorrow.
Hi Sue,
You say you felt bad before you took the pred, you struggled to get out of bed. This is what I would have done - NOT dropped the pred, but stayed on 20mg. Stayed in bed and pleaded with my family to bring me some breakfast and my drugs and then , propped up on pillows, rested for 2 hours. Your body was giving you all the advice you needed. It needs more rest. I know how difficult this is with a family, but you are not going to get on top of this illness if you don't pace yourself.
I agree with Celtic you are doing too much. I was very frail when I first got PMR.
Thank you ladies, I will take this advice on board in case it happens again. Neck still niggling but headache gone thank goodness. Will give a few days and if no better after the weekend will contact the GP
Hi Sue,
So glad you feel better. Please try to not to push your body too hard. Any major flare could lead to GCA. It often seems to me that folks who carry this illness are "go getters" big time. Therefore, it's very hard to let go and leave our responsibilities to others. You have to learn that lesson if you want to recover. It took me a long time to get used to pacing myself, but as I kept laying myself up time after time, I finally got the message. I must admit, that without my partner, it would have been much harder. I said to him when I knew that he would have to be there for me, as well as everthing else he had to do, that I would understand if he just walked away. I said that I would find a way of coping without him. I'll never forget the look on his face when I said it. He told me that he would always be there for me, no matter what. He always has been. Believe me , I know how lucky I am.
You come across as a very loving, caring woman who carries the responsibilities of family life very seriously. Now you need a little TLC.
This illness is very difficult to understand for we that have it and certainly for those around us. After all, we don't look very ill, do we? But we are.
Morning Pats, That GCA scares the hell out of me so am trying to pace myself. I know mostly what I can't do. Like take the dog for a walk and she is my dog. My almost 20yr old was complaining yesterday that I don't take her but told that I physically couldn't but she was in a moos because we are planning on getting another dog to keep mine company. Basically told my daughter that it's our house and our decision not hers as she won't be here forever knowing full well that if she could afford it she would be left. My husband is my world and helps me out alot and tells the other kids to help explaining that I can't. My youngest is almost 7 and she is great always asking to help me knowing I am in pain etc.
Thank you and I do hope I come across as a loving family woman. I would do anything for any of them but sometimes feel it is not being given back as their mother they think I should be like I always have been and do everything. I used to have my own newsagents with early starts etc and still do all the house and get kids to school. We closed it down 5 yrs ago due to my hubby having bowel cancer. (he is recovered) I often wonder where all that energy has gone and how I ever managed it but hopefully one day I will get some energy back and return to near normal LOL.
Neck and shoulders very sore this morning so not doing much today. I have my step-granddaughter for the day who is 8 and will keep my 7yr old occupied which believe is a blessing
Hi, Sue, Have just read your blogs and I feel a bit of a fraud since I am having things relatively easy compared to you. The preds are still controlling the pain and at times I feel as though nothing has happened. Think of me on Sunday morning at 9 a.m. when I will be attempting to take the Andrenalone Tabs. I had a conversation with my doctor earlier this week and she says I must try them! I said that I would like a Dexa scan and was willing to pay for it, but she said I didn't fit the criteria. What is the criteria? I haven't had any broken bones!! We have 6 children, the eldest three are all looking forward to retiring in the forseeable future. They are very good and helpful, but are torn because they have grandchildren, so we are on the back burner. I hope things improve for you soon, and everyone else that is struck down with this disease. - Jean
Hello Jean, I still have 4 children living at home. 2 daughters 19 & 6yrs and 2 son's 18 & 13yrs. I home educate the 6yr old and 13 yr old. The 13yr old having special needs. So I don't have to rush around for school runs anymore. I have 5 grandchildren from my eldest 4. (29, 27,25 &22yrs) and they have all left home (22yr going today and has no kids). Like I said earlier my 6 almost 7 yr old seems to know when I need help more than the others. My eldest lives in Bromley and knows what pain is as he is a sufferer of Ankylosing Spondilitis. But he lives so far away from me. I am so glad I found this support group an I do feel a bit of a baby on here even though I will be 49 next Friday.
The pred is controlling my pain mostly but yesterday and today it is back a little. I have hoovered through and that's it for a bit. I am going to try and do some baking for my wonderful husband later though but will see how I go. take care Sue x
Hi Jean -- if you are on preds you should have been sent for a baseline DEXA scan -- this is the general recommendation now for rheumatologists and GPs treating this condition. My rheumy didn't send me for one or any other tests -- which has bothered me a lot -- I arranged for a lot of them myself. I wanted the DEXA to have a standard to compare things to and really women should have this done anyway around menopause age.
Sue: I think that your 5mg drop was probably too severe. I dropped at 2.5 mg increments initially then after 10mg, at 1mg or now, half mg now that I am below 5mg daily. However I will say that I did have a return of morning stiffness once I started drops -- never as 'totally free of pain' as at high doses. Rheumy/GPs tend to still say people should be free of pain on preds but I think many if not most of us fi nd this is not the case and that it is a balancing act. Also we all tend to have some increased pain due to preds withdrawal -- which tends confusingly to be the same kind of pain as PMR/GCA. This often goes on for the first 2 weeks or so after a drop then settles (my experience). Many of us clear a week of activity when we are going to do a drop. It can be easier to gradually drop by alternating the new dose with the old dose. I now do this for a week or so at these lower doses which can be tricky to drop.
For all out there -- the FDA just approved a new *time release* prednisone which in clinical trials has had very good success with morning stiffness (which for many of us is a heck of a lot more than just 'stiffness!" for rheumatoid arthritis and in PMR trials. I would hope it will soon be approved in Europe as well -- I've been following the clinical trials and time release preds just makes so much sense. Dose seems to be the same -- but you take it at night. I thankfully now have little morning stiffness but found it exhausting until a couple months ago -- would last a good 3-4 hours -- so would have jumped at the chance to try the time release preds,
I would agree that if headaches continue, to check in with your GP/rheumy but think if I were you I'd go up to 17.5 for a couple weeks and then try a drop to 15. Tylenol I found helpful for morning stiffness.
given my age do you also think I should perhaps request a Dexa scan????? The headache and palpatations are worrying me to be honest though the doc did not seem concerned by the palps and thought it could just be the start of menopause or something. I am having a fair few a day though.
Yes, like Pipistrelle, I was adamant about having a DEXA scan at the outset of embarking on steroids in order to have a baseline reading especially as I was starting on a high 40mg dose I'd never had one and I was aged 65 at the time. Both my rheumy and GP refused saying that there was a 9 month waiting list. I opted for a private scan (which my GP thought was a good idea!!!) and the result was normal. Two years down the line, I had the gall to ask for a repeat of the test.....surprise, surprise, this time it was agreed on the NHS. This result showed osteopenia but I would add that I didn't take calcium supplements alongside the steroids - they weren't offered, plus I later heard from a radiographer that they would be risky anyway for someone with only one kidney with slightly reduced function, so perhaps a lucky escape. I have always taken plenty of calcium in my diet, plus oily fish several times a week, and I also rely on such things as a daily walk, Tai Chi and have done a course on Nordic walking which is excellent for our bones, with the poles for support and helping with balance. Definitely recommend that scan when embarking on steroids.
I had palpitations both from peri-menopause and from the preds. Stopped as the dosage dropped, and as I moved into actual menopause.
When I went for my DEXA the nurse gave me some great info sheets on calcium rich foods etc. I too get a lot in my diet as I like cheese, yoghurt, kefir and probiotic drinks & dare I admit ice cream.
Geez at 65 there should have been a DEXA already I think just for general health knowledge and maintenance! No wonder so many women end up with osteoporosis -- I think these issues are really neglected. Having a DEXA is good preventative medicine.
And we get so little info on menopause too. I am the daughter of two medical people and would have considered myself well informed on many medical things, but so little is this discussed that I had never heard of peri-menopause, didn't know common signs and symptoms, thought you HAD to go on HRT (you don't especially if you don't have many overly bothersome symptoms). Taking steroids does have potential impact on our bone health so any woman in particular on them should have a DEXA not least as we get these conditions (PMR/GCA) close to or after menopause when we are at higher risk of osteo problems generally.
PS Blood tests will show if you are in perimenopause (pre menopause) as hormone levels start to fluctuate. I had some general blood tests a few years ago at my GP (can't even remember why) and the nurse rang me to tell me they were all clear but I'd started perimenopause -- explained a lot! LOL I'd ask for the tests -- knowledge really helps you sort out what may be happening and why and separate out if its due to one thing or another. I had some really strong palpitations as I went into perimenopause but they've stopped.
Hi Sue,
So glad you are taking it a little easier today. It's good to know you have a great hubby who understands that you can't do it all anymore. I know kids can be self centred when they are older, I guess my two girls have their own lives and they know my partner is very supportive, so that's ok then isn't it? You know what I mean, don't you? It doesn't mean they don't love you. They simply can't understand. I guess most of the time you look quite normal, but lets face it, would we want to look aweful as well?
As for the palpitations, In my opinion, it's the pred. I had them a lot. They will go as the dosage is reduced. Try to sit your bum down when it starts, don't push it.
Most women get side effects with the menopause. They start before the periods stop. The major ones are hot flushes and night sweats. My GP put me on HRT and it got me through and kept my bones strong. I had a DEXA scan not long after I started with PMR. The nurse who read the results said I had the bones of a twenty five year old. I was amazed because I have been lactose intolerant since my early forties and I thought my bones would be in bad shape because of my inability to eat most dairy products. All those calcium tablets I chewed did the trick and the oestrogen, of course.
Your strength will improve, but it takes time and much perserverance. Slow and easy with those drops.
Thanks Pats. Have just had paracetamol for my headache. I am going to bake a victoria sponge in a bit, I am getting used to using both hands when baking and mixing lol.
As for the menopause I had a blood test for it over a year ago and said I was not menopausal Bring it on I can't wait for my periods to sod off. I only have one overy and was told I would hit the change early, well like I said I am 49 next week and still getting the bloody things though they have changed as in go almost 5 weeks between and they are lighter and only last 4 days so I suppose I shouldn't complain.
So good to see that sense of humour is still fizzing. I'm still laughing. We can't stop you can we? At that stove again! Good job I don't know where you live. I'd come round and tie you up!!!!!!
LOL. I am in Leicestershire and according to the find people in my area well there aren't any. So I am a one off
Victoria sponge cooling so why it is I will whip that double cream up. nom nom nom nom can't wait for dessert now, goodness knows what it will do to my sugar levels.
Had to ring doc as my neck is so stiff and my shoulders have pain. It was a different doc as my usual not there. But he said I have obviously had a flare up and to go back to 20mg for 5 days then try again after that to drop to 15mg. If still have problems then to go back to see them. Happy with that.
I do hope you start to feel better after the increase back up to 20mg but I still can't believe that yet another GP is telling you to drop back down as far as 15 again, especially following what he/she has referred to as a flare, and even more especially after only 5 days. That is far too steep a drop following a flare and far too short a period to properly get control of the inflammation. It's possible that reducing in that way again would see another return of the pain necessitating yet another increase, and to keep yo-yoing the dose up and down will only lead to a higher total steroid intake overall. Far better to reduce in smaller steps.
Thanks Celtic, will see how it goes and if it flares again then I will be back and demanding no more than the 10% reduction.
Oh and the victoria sponge was so yummy only one slice left.
Hi Sue,
I have to agree with all Celtic has said. When I started to reduce from 20mg I found the pain returned. I then reduced at only 1mg per fortnight and it was totally successful. My body still had aches and pains and, I often got burn out, but when it came to the next drop I was ready. I came down to 10mg raring to go! The difference between your treatment and mine was I had a Rheumatologist's guidence. If this reduction plan does not work, and I really hope it does, then please ask to be referred to a rheumy.
Hi Sue. Yes, I'd agree that a 5mg drop is big - even from 20mg this is still a 25% drop. Much better to go down 1mg at a time if you can. My doctor got me down to 17.5 and then to 15, using the 2.5mg pills, and that wasn't too bad. The headaches go with the territory - partly the illness. In fact, a research rheumatologist in Leeds is starting a new study on the symptoms that PMR patients have that seem to be a watered-down version of GCA. She suspects that a lot of PMR sufferers have headaches and other symptoms such as stiff neck, tender scalp etc, that seem to be a kind of 'peri-GCA' but never flare up into the main event. When you get these headaches don't be afraid - the level of steroids you are on at the moment will protect you from GCA. Where people have to be on the lookout is when they get down to below 7.5mg, it seems. When you do get a headache, or when the PMR pains come back, do take paracetemol. Max dose if necessary. A rheumy nurse told me to take them for a week every time I dropped the steroid dose and they really did help my body to get over that withdrawal period.
The headaches are driving me nuts as it is not something I usually have. Had a really painful morning today and it took til late after noon to feel somewhat normal ish.
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