Ups and downs

I recently experienced a flare after reducing pred on holiday. Went downhill nine days later. Increased again and saw the rheumy nurse. She suggested I stay on 30 for now. She run this by the doctor and he emailed me to say he felt my problem was unlikely to be caused by GCA. Here we go again. He wanted me to reduce by 2.5 every two weeks until I got to 20mgs. Despite having constant temporal pain which was really getting on top of me I listened to him. Went down to 27.5. Constant pain, fatigue, painful scalp, looked awful and felt quite low. Woke up yesterday and decided no more. It's my health and my eyesight. I decided to experiment and hit this hard to see what would happen. I increased to 40 which was my starting dose when I first became ill in November 2016. By the evening the pain was settling down. I woke this morning almost pain free. I feel better. I certainly look better. I was frightening myself when I looked in the mirror, I looked so rough. I will go to see the GP tomorrow and tell him what I did. This improvement has come so quickly after being in pain for weeks. Has anyone else had to increase so high to get over a flare?

30 Replies

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  • Hi Elaine-W

    I went back up to 35 (starting dose 40) to be fair my GP had suggested higher, but I was stubborn and emotionally did not want to go back to where I had began over a year before.

    If you have the pain from GCA its like no other, I have in the past hoped it is just a headache, but in reality I have known and then it develops further, laying down becomes uncomfortable etc.

    In 2 years I have had 3 or 4 flares, caused by other external conditions (stress and illness), and mainly I believe, decreasing dose when I am still uncomfortable and not stabilized fully on the current dose. Even taking the dead slow approach, if I have temple pain and I try and reduce it has never worked.

    Listen to your body

    Best wishes

  • Hi,

    My advice, and many others on here, would be - DON'T decrease if you have remaining symptoms. Just not worth it, usually means your current dose is just on the cusp of being enough, and if you drop below, then along comes a flare.

  • Definitely, its only taken me almost two years to fully accept this ....... I must be on the dead slow!

    To be fair though, in my defence, the Rheumy constantly goes on about reducing, if I mentioned my neck or shoulder pain, he said he wasnt bothered about that! But now I know my body, this is the beginning of being at my lowest level of preds and if I reduce, the temple pain comes soon after, so if I reduce as he suggests when I am uncomfortable, the condition becomes unmanaged ~ so I have learnt to listen to my body and be patient!

  • Ohh! Don't you just luv 'em. He may not be bothered, but he hasn't got the pain has he! Why they have this love/hate relationship with Pred I really don't understand. If you need a certain dose - you need a certain dose, no matter what all the books and papers say!

    Trouble is, at first we listen to them expecting them to know everything, but in fairness they don't, and they certainly don't know your body as well as you do!

  • I agree - they neither fully understand the discomfort or fatigue or the side effects of steroids. To be fair I don't think anyone fully can unless they have experienced it which I dare say is the same for most conditions.

    I hope you are doing well.

    Best wishes Dorsetlady

  • Yes thanks, apart from creaky knees - but that's a different matter altogether!

    Take care.

  • Doctors do not have our body hence we suffer not them !!! I just tell my doctor what I am doing and he is fine with this. I am now doing 1 day 7.5 and the next 2 days 7mg, but only just keeping all at bay.

    Think next week I will go back to 7 one day and 7.5 the next and so on. Was absolutely fine doing this, roll on the day I can stick at 7 for a while ( some hope ) when I feel down in the dumps I ask God why me ??? But then I think of all my friends on here who are going through the same.... so I am not alone anymore, thank you everyone for this wonderful forum xxx

  • That sound a good idea. Maybe try 7.5/7mg alternate days for a couple of weeks and see if things settle. Drs may say 0.5mg doesn't make a difference - but it does!

    You should also remember that you are about at the level that your own adrenal glands would be working at, so that makes reducing even more difficult for some!

    It does get very frustrating at times, but as we're always saying, you can't rush it. Unfortunately PMR/GCA takes its own timeframe, and there's diddly squat we, or the doctors, can do about that!

    Good luck.

  • Wonder if anything in my body will work on its own anymore lol lol my doctor has never given me a time limit for it all to burn out, I actually cry in front of him as I get so fed up, but he understandsi get frustrated after all these years of being on preds. We can always live in hope !

  • Hi again,

    Unfortunately no one can give you a time limit - I think maybe it depends on the patient, age perhaps, sex -certainly men seem to have an easier time - perhaps their hormones aren't as complex! or maybe the type of PMR - PMRpro thinks there are various strains, some a lot longer-lasting than others.

    Some lucky people get over it in 2 years, but 4-6 years seems to be nearer the norm, and of course, it never seems to go for others There are a few contributors on here who have had it considerably longer than 6 years.

    I had GCA, never sure I had PMR as well (nobody could confirm either way) and mine certainly lasted almost 6 years.

    So, as I said, patience. But if you think about it, lots of people have illnesses that are chronic, and they take medication for a lot longer than PMR patients. I've taken medication for raised blood pressure for about 15 years, it's well controlled and causes me no problem. I'd rather not take tablets, but if it stops me from having a heart attack - I'll take them!

    If you can say to yourself, I've got this problem and need to take medication for it, end off. If I've got to take them for a long time, its a nuisance but not a great hassle (especially once you get below 5mg, virtually no side effects), if it goes away, great, but that's a bonus!

    Don't always have in the back of your mind I want to be off these tablets - it just makes you more stressed.

  • It's the side effects of the tablets that make one anxious to be off them. Mine are not funny, and can be distressing quite often.

    Takes more than patience!

  • I know, Been there. But in my case, I had already lost sight in one eye, so any side effect was bearable compared to the option of losing both.

  • Thank you for your reply. I feel a bit nervous about going to the doctor tomorrow. I feel I am in limbo again with indecision about this illness. If I don't have GCA then how can I have something that has mimicked it for all this time. I didn't make my symptoms fit this. I had never heard of it before. I am scared of the thought of what this illness can do if not treated

  • Well be frank and honest, explain how you feel. Hopefully you will be referred for a proper diagnosis to be made.

    Best wishes

  • At my last consultation he said he was diagnosing me on clinical symptoms. That is until this recent reduction where the symptoms returned. I had a negative biopsy which complicates things doesn't it

  • At least he is aware that negative biopsy is trumped by clinical symptoms - there are a lot who don't accept it.

  • Try your best not to be nervous about discussing all this with your doctor. They do like patients who are 'expert' in their own conditions, as they realise they don't know everything, if they are honest with themselves. They are human beings too (!) - just imagine you are talking to a friend or relative of the same age / gender as your doctor or imagine you are describing the symptoms of a friend who you dearly want to help. YOU are that friend! And all this in 10 minutes, or have you asked for a double appointment? Take care. x

  • Thank you for taking the time to answer my message. I have also been so reluctant to increase but this time I didn't even think about side effects. I just wanted to go back to feeling good again. I wish you well

  • Hi Elaine,

    Not personally, but certainly there are some on here who have had to go back up to the original dose. But, usually under the direction of their doctor. However, for some reason your Rheumy doesn't seem convinced you have GCA, if that's based on a negative biopsy only, then I would question his experience - what does he think it is?

    When you discuss with GP perhaps he can double check with Rheumy on his diagnosis, and in the meantime agree with you to approach things a bit more sensibly.

    Think you need to stay where you are for a couple of weeks, before you think about reducing again - 2.5mg per fortnight is do-able, but only if you are pain free! Hopefully by that time your GP/Rheumy may have come to a conclusion on your diagnosis.

    Take care.

  • Thank you for our reply.

    The Rheumy wants me to be seen by a neurologist to rule out migraine. I know it isn't that. I have had migraines for years and they present very different for me.

  • I used to have migraines all the time for years !! But once this GCA came on I have not had any, strange.

  • I also had to 'taper up' - even prior to seeing my doctor as I felt my symptoms required it (as first PMR - then emerging GCA). He initiaily wasn't 'happy' I did that without asking him first but the risk of possible side effects I thought was not nearly as serious cf. potential for eyesight loss (which my once untreated mother had). I then have had to go higher again and finally symptoms are under control at 60mg. My GP wants me tapering off this level asap but I have dug my toes in to stay on a higher dose until I am more sure symptoms have resolved and also an ophthalmologist has checked my eyes thoroughly. We patients must be able to make an 'informed consent' when we agree to or even disagree with our treatments - after all they are OUR bodies and we must live with long term consequences. I am not advocating full-on insubordination but as so many others have wisely said here we cannot disregard what our bodies are telling us.

    Hope you get through this all the very 'best' way you can !

    Kindest

    Rimmy

  • I don't know a lot about gca since I have not had it. But most people that I've known have started on a much higher dose then 40 mg. So I'm sure you will be fine on that dosage. I'm just very disappointed in your doctor that he would risk your eyesight for what a few measly pills.

  • It's because they're worried about the long-term side effects of the Pred. These are many and can be serious. They can end up being more serious than the original condition.

    Most medics try their best. And they don't want to be sued for malpractice when nasty things happen to their patients, either. So they're walking a tightrope between trying to control the inflammation and avoiding the worst of the side effects. As we all know, this is not easy.

    Onwards with hope . . . .

  • Hi,

    Yes I know they are worried about long term side effects of Pred - and so are we, but most of them - raised blood pressure, diabetes, glaucoma, cataracts et al can all be treated.

    Unfortunately, if you lose your sight in one or both eyes through lack of, or too little Pred that cannot be rectified - know that, I've got the T shirt!

    I'm not denigrating the medical profession, but some do have a blinkered outlook with Pred. They know it's the only drug that controls the inflammation caused by GCA/PMR, neither they nor we really have a choice. .

  • I do know - that's why I soldier on as stoically as possible, despite all side effects to the contrary. And am grateful not to have lost my sight. So far. But it's a rough road, isn't it.

    Some of the medical profession do deserve denigration. They can be a right pain! But some are excellent and really do the best they can.

    Saw a different GP yesterday. Obviously wanted to be 'on my side', but finding it difficult. I could see her problem. She was good though - actually listened and was helpful. Am hoping for improved support after this.

    Thanks for all the help, info and support that you give us all. It is invaluable, especially for newcomers. Don't know if I could have managed without you.

    Until next time!

  • I must admit I am amazed how little some doctors know about drugs and how they work and their interactions. I suppose because they keep changing they have to read up on new products and they seem to have a problem reading! Saying that my GP knows nothing about steroids and they have been around for over fifty years. She does admit she gets muddled over drugs and has the British National Formulary sitting on her desk. I am not sure how often she reads it though!

  • The NHS system doesn't leave them much time for catching up, these days. I think the fact that she refers to the BNF is probably a good sign! You have to hope . . .

  • BonyQuine, as Dorset Lady says the doctors have to weigh up the advantages and disadvantages of taking pred against the illness. If you lose your sight permanently with too little pred, more pred may be a lot more preferable than staying on a lower dose in spite of the side effects.

  • I have PMR so I am aware of all that. But I still believe her doctor was being overly cautious to the point of possibly risking her eyesight.

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