Well I got down to 9mg of pred and went insane

[lynabelle]

After visiting my rhemy a few weeks ago , he told me he wanted me down to 7 mg in 6 weeks so as he suggested I came down by 2mg every two weeks , let me just say now it was horrific and I don't know how I am ever going to get off these things , but I will now do it at my own pace .

I was crying constantly, I did not know what to do with myself so stayed in bed, I thought I was going mad, I was unable to do simple tasks and kept forgetting what I was about to say , that was when I wanted to speak , most of the time I didn't .

It was hell , then yesterday I could not even get out of bed, my back and neck has seized up completely and I felt so ill, I decided to go back to 15mgs and hey presto within 2 hours I felt so much better.

My lesson has been learned, I will now alternate between 15 & 14 for a week and then 14 &13 and so on .

[trishyb]

Once I got down to 10mg I dropped by 1mg per month until I reached 7mg then alternated between 7 & 6 for the next month before dropping down to 6mv for 2 months which is where I am now. Drop as slowly as you can as it doesn't matter if it takes longer. at least you have a better chance of getting through the lower doses without too many problems. Good luck and hope all goes well. Tricia

[JUDEAPUDE in reply to trishyb]

I am coming down half mg every 3 weeks. I have reduced today to 8mg. It is very slow but fingers crossed it seems to be working.

Good luck

[Hidden]

Poor you, hope you are feeling a lot better now that you have readjusted your dose. Its pretty scary when this sort of thing happens - the main thing to do is listen to your own body and drop doses very slowly. Luckily I am now down to 5mg a day but the mood swings are horrendous and I am putting off further reductions until I am sure that I am ready for it.

Just remember we are all here for you and most of us have been there so we do understand. Hang in there!

[Annodomini]

What was your rheumy thinking of? My GP has never sent me to one but is very experienced and trusts me to know what I need to do. I've been going down 0.5 mg at a time and am not on 3. She has told me not to reduce until I feel ready and to look out for flare-ups. Good luck to you lynabelle. I think its when we learn to trust our instincts we make progress.

[lynabelle]

You are all so right, I don't want to go back to him, he made me feel about 4 years old , he said I did not have pmr and walk 20 mins a day , I told him that if my back seizes up i can hardly walk at all , he just ignored that comment and said go down to 7 mg in 6 weeks , have a blood test and I will see you in June.

I will speak to my doctor this month and see if I can see someone else

[yogabonnie in reply to lynabelle]

arrogant jerk. find someone else. you know your body better than he does.!

[Celtic PMRGCAuk volunteer]

lynabelle

Poor you but you would think that any advice from a rheumy must be sound wouldn't you. Thank goodness for forums such as these. However, rather than alternate between 15 and 14 for a week, if it was me I would stay at 15 for at least a week before reducing again to be sure of getting complete control over the inflammation. You may then find that you are able to reduce down more quickly this time to the dose at which you last felt comfortable and then stay there for a good few weeks before reducing further, and at just 0.5mg a time if necessary - that way it will be easier for you to see at which point symptoms are returning and where you need to remain for a bit longer. I do hope you feel better soon.

[floramay]

to days a go i droped by 1/2.mg last night i started to burn up,not slept all night so hot now got pain all over.never going to get of themican not even think straight enymore

[lynabelle]

I know it's horrendous, I will never go on them again as soon I eventually come off ,

[Hidden]

Lynabelle,

Many of us find reducing very difficult on the teen doses and you have had a particularly bad time. I would suggest that you stay on your present dose for at least 2 to 3 weeks and , if you feel pain free and mentally stable, then drop by 1mg at a time. Listen to what your body is telling you - don't even consider another drop unless all feels OK. Then 1mg at a time. You might feel that you can reduce the periods between drops, but don't push it or you'll be up again on the doses. I used this method and it worked. I am now on 7.5mg of steroids and reducing every 2 to 3 weeks by half a mg.

Stop being afraid of pred! Remember, it's all we have, but it gives side effects and we all have to learn to cope with them. Pace yourself and rest as much as possible if you feel rough. Gentle walks are good if you feel up to it, but sleep if you want to and DON'T feel guilty.

Keep a diary of doses, reductions and how you have felt etc. Take this to show your GP on your next visit. He will then realise that you are coping and taking control.

Once you start to push this illness back to sleep you will begin to feel so much better. Prednisolone has the power to do this, but only if you give it a chance. Remember, it's not the drug that is the enemy, it's the illness.

Pats.

[duchess62]

You poor thing! I have read the comments below and would definitely agree with them all. The slower the better. We all put our trust in our GP's and Consultantants but don't always get the correct management plan so feel like we are not getting anywhere! Some GP's and Rhumys are so determined to get us off Pred that flare ups are inevitable and we are back to square on. Tell them you will manage yourself reduce by 0.5 ml to 1mg monthly from 15 mls down recovery is not a 100 meter race it's a marthon! Have faith be positive you will get better!

I am on 12.5 mls having come down from 15 last Saturday 9/3/13. I Started on 60 mls on 6/8/12 and have been up and down like a rollercoaster ride. Apparently my symptoms are not ticking all the right boxes for a standard PMRGCA patient so my GP and Rhumy have decided I do not have either desease.My symptoms are the same but my blood tests are conflicting. A case conference is to be arranged and I will be there for all to examine me. Fingers crossed that we get some answers. In the meantime I will keep taking the pills!

Good luck

Lynda

[lynabelle]

Thanks Lynda , my husband is currently writing a letter to my GP ready for when I see her on Friday ,the last time I went to see her I was an hour late getting in and I only had about 2 mins with her, my diagnosis has never been fully confirmed , I did not test positive for gca and the rhemy says I do not have pmr and yet I have all the symptoms, all I want is to feel normal again like all of us, good luck with you case conference and please let us know how it went

Regards

Lynn