Posted a week or so ago about sore elbow (self inflicted I think after cleaning the decking) - this is now feeling much better - just a bit sore. Thanks for all your advice.
In the end i just took paracetamol to numb the pain - chemist advice was not to take Ibruprofen with steroids at all as there is an increased risk of stomach bleeding.
Since the elbow pain - have had ups and downs - feeling quite unwell --- tired, quite headachey, feeling of nausea at times during each day for the last week ......... like the beginnings of a migraine but it fades and then comes back. I have been a migraine sufferer in the past particularly over the menopause years but haven't had a migraine for at least a year. Also woke up with sore right shoulder this morning - no explanation for that.
Am seeing Dr on Monday for results of Bone scan and blood tests for inflammation markers and thyroid test results..... pre blood test she suggested I may have to reduce Thryroxine again (last summer on 150mcg - now on 100mcg) as I am at the top end of her chart.
Will have to ask if I can take the Migraleve tablets for migraine which were prescribed pre steroid - has anyone take these with steroids?
Oh dear - feel like I am rattling with pills for various ailments and am feeling a bit sorry for myself. My first 3 months on the steroids were pain free and I felt fine altogether... into the 4th month and not so good.
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suzieh
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Hi suzieh. I'm Trish 29 and I'm sorry you feel so unwell. I have suffered with migraines for years but more so after getting PMR and I found that taking Migraleve made me more nauseous but I was put on to Imagram which always works for me. Your shoulder pain sounds like PMR and I hope it goes away after a while? Hopefully you can keep yourself comfortable until Monday and I hope your Doctor gives you good results on your bone scan and the other tests you had done. It's bad enough feeling poorly without all the migraine symptoms. I will be watching the blog to see how you get on. Cheer up and all best wishes trish29
suzieh
First three months pain free - what dose of steroids where you started on and what dose are you on now?
Started on 20mg; reduced to 15mg after 5 days as I felt hyper and jittery; stabilised on that - and remained pain free; reduced down over a few weeks gradually to 12mg. Did try to go to 11mg a couple of weeks ago but felt pains in the shoulders coming back so went back to 12mg. Maybe trying to reduce the last time was a step too far and has led to this unwell bout?
Thanks for answering..............
Hi suzieh,
You are reducing too fast - your illness is still very active and using every opportunity to flare. Go back to the dose that kept you 'pain free' and stay there for at least 2 weeks. Then reduce by no more than 10%, even less if your pain returns for more than a few days. I have always used ibuprofen to help get me over the drops, but paracetamol can help for many people. Just try it.
Hi Pats, Your posts always have such good information. You speak of reducing by 10%. Do you do this by weeks? Many of the doctors in the U.S. are not that familiar w/GCA. They start me on a high dose and then just say "reduce it" and "let me know how you feel". -- -- -- I don't want to be on this at all and I do reduce it. But in reading here, on this blog, it sounds as if reducing by small levels, it helps. (computer 'ghosts', as we call them, just erased an entire pp.)
I do want to learn how to deal with medrol and GCA and not get Cushing's or Addison's. This is a serious disease and can have very serious consequences. Thank you for your good work and posts here. They are very helpful, this is a rare disease. thank you. Is the 10%, per week? thanks. wishing you good health, Whittlesey U.S.
I had a brush with GCA in late 2011 whilst on holiday, but it was knocked back quickly by a wonderful GP who really knew how to deal with it. 30mg bang - on it for a month, then down to 25mg for 2 weeks, then down to 20mg. GCA gone! Only PMR to deal with. That's when it all got more difficult. Was only able to drop by 1mg every 2 to 3 weeks, and at 10mg the drops were reduced by half a mg every 3 weeks or so.
Since then I have been GCA free, and, apart with one relapse of PMR after a wrench injury, I have been able to reduce again slowly but surely until now on 7mg.
My take on GCA/PMR is this - you can't drop the doses of steroids if you do not feel well, and that means mostly pain-free. You will certainly get periods of lethargy and weakness, but that's normal, so sit down or lie down and refresh!!!!!
Have a bite to eat and a cup of your favourite beverage and rest - sleep for an hour or so if you can. And don't feel guilty - those around you will not understand (they'll look at your bonny round face and
pink cheeks and think you're putting on a big act), ignore!
These illnesses go when they want to and we all cling on and hope they won't be with us forever. The only friend I have is prednisolone - I hated it for 2 years and then I began to recover and the doses came down. Suddenly, I began to regain my stamina and the side effects started to go. I really looked at pred in a different light.
Don't listen to doctors telling you how to reduce - they simply don't know and every time they get it wrong, they will drop you in it again and your symptoms will flare and you'll be up on the higher doses again. So, listen to your body and act accordingly.
When you have been pain-free for at least a week, then reduce. Slowly! If you have a flare, don't go with the dose for more than a few days, but go back , stay there until the pain goes and try again more cautiously, Half a mg or so ------- there are so many ways to do it and many on this site have given good advice, but in the end it is down to each of us to find the right path. The 10% is a rough guideline and as a rule, it's better to drop no more - less yes, if it works better.
I was scared whitless when I developed PMR, but I'm feeling pretty good now and thanks to the help of others I avoided going mad with worry.
Look after yourself and try to pace yourself as much as possible.
Thanks, Pats. I have read what you have said and read it again. Yes, I understand and am getting a sense of this. The medication is just as important as the illness, and it seems, that currently what we really have for this, is prednisone. I'm glad you are through the GCA and are feeling better concerning the PMR. Your advice makes a lot of sense. I have started to try this and will continue.
Agree about the doctors. They haven't gotten to this point, I don't think, most of them. If you go down a few grams and feel ok, they are fine with it.
And yes that has happened, I had the flare and they wanted to use a lot of the prednisone. I refused, because I knew what would happen afterwards. I had just had the times of fatigue and exhaustion and a high dosage of 80mgs, which is what they wanted to do in the emergency room and then a drop, would have that start again. I took 20 mgs at the hospital and reduced it myself, when I got home from the hospital. And the problem of the arteries dissecting did not get worse. It is stable.
I am trying to reduce by 10%. Thank you for your advice. The prednisone can be as much of a problem as the disease, it seems. But I am getting an understanding. Thank you.
I see my rheumatologist tomorrow and will speak to her about this. She has seen a lot of GCA and seems to know the symptoms and side effects pretty well. I am sure she will be in agreement with this. Thank you for your sensible advice and I hope you continue in well being. all my best, Whittlesey
Yes, I agree with Pats - it does sound as though you have reduced far too quickly, added to which you cleaned the decking!! If you overdo things on a good day, especially in the early days of this illness, PMR will come back to bite. Frustrating, I know, but PMR is a life-changing illness and although it might go against the grain you have to give yourself lots of TLC and allow the steroids to do their job of controlling the inflammation.
Most of us feel "hyper and jittery" on the high doses, but as you felt better on the 15mg (and lucky you becoming pain-free) then it would have been wiser to remain there for several weeks before reducing again and certainly not down as far as 12 so quickly. In spite of becoming pain-free, you still need to give each particular dose a good month to make sure you have stabilised. Plus if you reduce too far and too quickly it's impossible to judge at which dose the inflammation took hold again.
The headache and nausea to which you refer concern me in that these were among my symptoms before being diagnosed with GCA. As you say you are a migraine sufferer, then that might be the cause but, hopefully, your GP will investigate thoroughly at your appointment tomorrow - be prepared for an increase in your dose. Good luck!
Yes, I agree with your post here. The nausea and headache were symptoms of my GCA. Because I had been a migraine sufferer for over 10 years, my doctor at that time thought it was a new form of migraine. I knew it was something different. I also felt dizzy and very debilitated. The first test for c reactive protein showed a high c reactive protein. I then remembered that my mother had had GCA and the high c reactive protein, horrible headache and was telling me she knew something was wrong. It took four months for them to do the biopsy, which came back positive.
The GCA headache is a little different than the migraine headache. And it returns when the migraine medicine wears off. I had mine for at least two weeks. The biopsy is not painful and doesn't really cause disruption. A positive reading, can get the person to the treatment for GCA.
"I knew it was something different". Yes, we know our own bodies don't we and that's why it's invaluable when we come across a Dr who listens!
I'm lucky to be able to say I haven't been a migraine sufferer although my Mum was so I do understand and sympathise with those who suffer from migraine. I can also sympathise to a certain extent with our medics in searching for a diagnosis when we suffer from other illnesses which produce similar symptoms, thereby complicating the diagnosis. Such a complication was my experience when remaining undiagnosed with PMR for a very long time due to a long-standing spinal problem - I was almost on the point of undergoing spinal fusion when an expert orthopaedic surgeon suddenly decided that something else was also going on (thank Heavens for him). Still took a year and the eventual arrival of GCA before PMR was also diagnosed though!
I'm sure your post with its comparison between migraine and GCA symptoms will prove helpful for other migraine sufferers 'looking in' who may be looking for a diagnosis. All good wishes.
Hello Celtic, Yes, how very true and agree about finding a doctor who listens. It helps tremendously.
I'm so glad the orthopaedic surgeon looked for another cause in your situation. I'm sorry to hear about the wait for the right diagnosis. I'm glad they found it, and you're receiving treatment for both GCA and PMR.
Sorry to hear that your mother suffered from migraines. Yes, I was having difficulties about 4 months after the initial diagnosis, with pretty bad headaches. I went to the emergency room with one and a doctor told me that he could not tell if I had a bad migraine or if this was GCA, flaring. I did not want to go through the high doses of prednisone, but went through the tests. I responded to treatment for migraines and he increased the prednisone, about 20 gms, not 80. I stayed 3 days and I now see both a migraine specialist and the GCA, opthmologist and rheumatologist.
Yes, I wanted to share that information, because it can be confusing for both patient and doctor, and if it is a migraine, that can avoid the very large doses of prednisone, with their side effects. I hope the post was of help to those 'looking in'.
Thank you for your response. The support helps -- -- as with most on this post, I believe, actually having GCA was unexpected and changed my life quite a bit. I am still dealing with that, but it is much better than it was. Thank you for your answer. It is appreciated. all my best, Whittlesey
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