Feeling really cheesed off, had gradually come down from 60 mg daily and had reached 30 and then was to go to 20. Got headaches, not as bad as when GCA diagnosed but quite bad and unrelieved by Panadol. So spoke to my GP who suggested 25 mg for a week and then down to 20mg again yesterday. Headaches yesterday and today, again not as bad as first time round but really depressing. Should I up the dose tomorrow to try and sort the headaches, I have 5 mg and 1 mg tablets available as I was supposed to start reducing by 2 mg a week next week. Tomorrow going to be a not so good day anyway as I feel yucky after taking the Alendronic Acd tablet.
Also today had awful cramps in both hands and sore fingers all day. I hate this blooming disorder , sleep every afternoon and not taking well to getting fatigued after doing virtually nothing. And don't get me started on the Moon Face and the fact that nothing tastes the same.
Rant over. Going to bed to not sleep.
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Dovelady
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Dovelady, why are you taking AA? Have you had a baseline Dexa scan which shows osteoporosis or osteopenia? It is not a nice drug to take if there is no real need do to so and the case would have to be proved to me before I would even consider it.
If you haven't yet had a scan request one from your doctor or Rheumy.
No, not had a Dexa scan but had one done a couple of years ago after a fractured wrist. Will certainly talk to my Doctor about the need for AA at my next review in two weeks time.
Hi Dovelady,
No wonder you're so fed up! 60mg - one hell of a dose, and then to be thwarted when you had made it down by so much. But let's be sensible now - you've done it once, therefore you will do it again. If the headache persists, then up the dose to 30mg and hold it until the pains go. A week should do it - hold for one more week and if OK then drop to 25mg. 2 weeks and then try another drop to 20mg.
You have to play the illness on a personal basis - it's a game and it's no fun - I know it!
I started with PMR and, because I dropped too quickly, I touched the edge of GCA. This was whilst I was on holiday, but was guided by a very wise GP who had no hesitation in upping my megre dose to 30mg for 2 weeks. It worked. My holiday snaps looked like 'Miss Piggy on a jolly in Snowdonia'.
The side effects are not for the faint hearted, but as you suffer, hold on to the thought that we all get them - mostly, and as the doses are reduced the side effects deminish, and one fine day they will be just a memory and you will feel so proud that prednisolone did not beat you. It did it's job and put your illness back to sleep - and you survived. There may be a few 'scars', but this is a 'fight' after all.
Yes, I agree with polkadotcom. Have a scan done if you haven't already. You may not need AA.
As for the moon face etc - it won't be forever. It will go. Mine has. I'm on 6.5mg now and feel so much stronger, but still have to pace myself a bit - my adrenals will be very reluctant to wake up, so I still get 'burn out' if I'm not careful.
Dovelady - I had to stop at 25 mg pred for a while with GCA, when I was reducing down and then had to reduce in smaller drops to get down to 20mg. It's all very disheartening, I know, but slow and small reductions seem to be the way to go successfully. The moon face upsets me too but others think it suits me! Not sure if that is a compliment!
I went to see a Rheumy (after having had GCA for 4 years!) and he told me to reduce by 5mgs each month. I was put up to 30 mg when I first went on Warfarin after a pulmonary embolism and the Warfarin and prednisolone didn't agree with each other. Now I'm on 10 mg and have earache which is my main symptom, but I'm trying to put up with it. Don't want to go back up yet again!! The pred seems to mask GCA not cure it!!
I went to see a Rheumy (after having had GCA for 4 years!) and he told me to reduce by 5mgs each month. I was put up to 30 mg when I first went on Warfarin after a pulmonary embolism and the Warfarin and prednisolone didn't agree with each other. Now I'm on 10 mg and have earache which is my main symptom, but I'm trying to put up with it. Don't want to go back up yet again!! The pred seems to mask GCA not cure it!!
If when you increased to 25mg you felt better, then perhaps a return to that dose for a couple of weeks would be wise. Then if you feel better again rather than reducing from 25 to 20 as previously, you could try a smaller drop to 17.5 which won't be quite such a shock for the body. Especially easy if you have some 2.5mg pills. Third time lucky, hopefully.
Hi Celtic, bit confused about your suggestion to drop to 17.5 ? But I have taken 25 mg today and had no headaches at all. And the sun has been shining too so feeling a bit happier.
Am going to stick at 25 for a week and then try smaller 2 mg drops and see if that prevents the headaches. Hopefully my GP will understand my reasoning, shes on holiday this week so can't really discuss with her but from what every one says its a bit of a game and not a very funny one at that. I suppose everyone is quite different.
I see the reply from Chris above also seems to advocate this slowly slowly approach.. Yet again thanks for all the support, it really does mean a lot to know Im not in this awful thing alone.
Oh so sorry for causing confusion, obviously woolly head day for me today - I meant, of course, to say a drop to 22.5. The drop from 25 to 20 obviously proved a step too far last time and by doing it in smaller steps will hopefully be more successful. I'm sure your GP will understand that not everyone can reduce according to the plan laid down by their GP but need to be guided by their own pain levels and symptoms - as you say everyone is different and will need to go at their own pace. I'm so glad the increase has got rid of the head pain and long may that continue.
nannyjc, Prednisolone won't cure either PMR or GCA, there is no cure. What it does do is make your life more comfortable by managing the symptoms to give you some quality of life until the process (hopefully) burns itself out. 'Putting up with it' is not an option I go for and not dampening down the inflammation enough can lead to other problems.
Not sure where you have got your information from, but you can check out this site for correct, safe info. I do feel that a reduction of 5mg a month is too fast a reduction, particularly when you get to the lower doses. The guidelines state the reduction drop should be only 10% of the whole dose at any one time.
I was obviously lucky as I had no problems with steroid/Warfarin combo, but I was on Warfarin for only 6 months, so probably escaped any complications. I do hope that you can get yourself comfortable. Take care.
As previously mentioned, no way should you be taking the powerful drug AA without having a DEXA scan which shows whether there is a need for it.
On another point, NannyJC I have taken warfarin for the past 12 years after several PE's. I have been on Pred for a year and have never had any trouble with it.
I have a strange noise in my left ear, which sometimes sounds like a pulse, other times just a boom boom, but so far has not caused me any trouble
Regarding the AA I thought the Prednisone caused the loss of calcium from the bones and the AA prevents this , therefore it is reasonable to assume that you might start with a healthy range Dexa scan anyway but after Pred use the calcium loss starts. I am also taking the calcium and Vit D supplements. But I will speak to my doctor about it. I am wondering if my r wrist fracture following a minor fall might have been enough for her to consider it as potentially preventative useful therapy. The last thing want is another fracture.
Dovelady, steroids do leach calcium from the system but as some of us have some degree of bone thinning to begin with - that can be an age thing - we don't all start at the same point.
However, what they are doing is handing out AA (and some other bisphosphonates) without testing to see if there is a necessity for them there and then. If there isn't then why take them? Calcium loss again will affect us all differently and I was eight years down the line before any degree of osteopenia (the pre-osteoporosis stage) showed. Had been taking AA, which is not a nice drug to be on to say the least of it, I would have had to stop after five years and therefore would have spent those years on a very nasty drug for absolutely no reason.
We are all agreed that taking some kind of bone protection is a good thing, but not until it is actually needed and so far there is little proof that these drugs actually prevent you becoming osteoporotic in the first place.
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