I have had GCA since March and started on 60 mg Pred and have slowly reduced to 20 mg over 7 months . The rheumatologist says I must reduce only 1 mg every two weeks so at least 40 weeks to get down to zero and probably more as after 10 mg I know it gets harder. I am ill almost every day and do not seem to be making any progress. I took my dog to the river by car and sat on a bench and went to Boots to get my new prescription and was exhausted and ill for the whole day with awful weakness, head like a lead weight on my poor stiff neck with a dull headache. Feeling miserable as I had hoped to go to a craft evening. I saw the GP as I thought I might have a sinus infection as well but she would not give me antibiotics and prescribed a high dose antifhistamine and two more tablets to add to the 105 a week I already take! There seems no end to it. I dont seem to get much joy from my rheumy who I have no faith in. I am 63 and just cannot believe what a change it has brought in me.
Sorry to harp on but I am having a sorry for me day. I know all you kind people understand. Will it ever end?
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christine2715
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Please don't look at it as "at least 40 weeks to get to zero" - because if you get to zero in 40 weeks you will have done fantastically well. Most people take at least 2 years - and it is mostly more, the 2 year people are few and far between. I know you don't want to hear that but you have done very well so far.
However - if you feel so ill at 20mg there is something wrong that needs investigating. If you are so unhappy about your rheumy - is there any chance of a change? Where are you?
But over and above the GCA and the pred - you sound as if you are clinically depressed. It isn't surprising and it is something the doctor could help with. What on earth are you on if you take 105 pills per week? That really sounds OTT and could well be the reason you feel so poorly.
Hello PMR Pro, I am in Lewes, Nr Brighton and hope to go to the new support group in Brighton. I take Pred, Loritidine, mometasone spray, omneprazole, adcal, aleondronic acid, the new antihistimines, furosemide sometimes, omneprazole ( now take 30mg) aspirin - think thats it. At the beginning I got so much better but as soon as I started to reduce really ill - not helped by the several Pred sparing drugs I have tried without success. I dont want to take antidepressants - I dont think I am clinically depressed - just fed up with not making any headway and getting no real answers. If you know of a good rheumy please let me know. My current rheumy has said he might refer me to Professor Dasgupta. The Rheumy wont be seeing me until 28th December. Thanks for your reply.
The best who I would recommend is Dr Rod Hughes at Ashford and St Peter's Hospital Chertsey - which can't be any more difficult for you to get to than Southend. Bless him, he has quite a few off the forum on his books! And they will ALL tell you how good he is.
polkadotcom must be a relatively close neighbour of yours - wonder if you see the same person.
Will think about changing. Ashford is a long way away but worth it if I get better. To be fair to the rheumy he works across 6 fairly distant clinics so probably doesn't have enough time. Many thanks
Hi Christine, I'm in Worthing, and co-run the Worthing support group (with another Christine). If you feel you'd like a chat, PM me and we can exchange phone numbers. And there is always the Helpline - it is there for your use, too. Please do call.
PRMPro, no, currently Brighton is a completely different area, and has been placed in 'special measures' or whatever it is and I understand that there are plans afoot to merge it with us (Western Sussex NHS Trust) but the mills of the NHS grind exceedingly small.
I really do know that place you are in right now, all too well. You have done well to reduce by 40 mgs it must have been a bumpy ride, no wonder you're fed up. Glad that your subsequent reduction will be gentle. It's not a race to get off steroids you know, it's very much the tortoise and the hare. You'll win in the end. With any luck this thing will go as mysteriously as it came. What tablets are you on to make it 105 a week? I bet they all have rotten side effects too.
It's horrible not being able to do a nice cheering thing like a craft evening. It's like being continually put in detention I find. Nobody in my family will let me be a martyr either. I envy you your river and your dog though. I went swimming with my daughter and grandson yesterday, flopping around in warm water, followed by a longish walk. Spent all of today in bed getting over it, pathetic or what? Spent a revenge fortune on- line Christmas shopping. Revenge on whom? Me of course. I hope tomorrow is a happy day for you. š¼
Hi. Please don't forget that depression is a known side effect of Prednisolone. Not everyone gets all the side effects but I found it suited me to accept the help I needed to get me through feeling mostly well.
Many on this forum will understand a lot of what you are going through.
I know I need to pace myself but that is something I haven't sorted yet. I try and decide what I really want to do in a week and am prepared to give up all else to resting.
So sorry you are struggling, but that's the wonderful thing with this forum, everyone understands so its a good place to 'harp on'.
I am in Uckfield, if you wish to private message me happy to have a natter or meet for a cuppa, I have GCA and PMR so understand all of what you have said. I am a little further on, diagnosed in June 2015, and my journey continues, I am generally better than I was, but anything can knock me back.
I'll add my misery, if misery loves company might help you... šššš I'm on 55mg pred, havent been able to do successful taper since i started 60mg on on sept 3nd of this year. my primary care doctor says i must see a rheumatologist for pred taper, and a diagnosis, the opthamalogist says same, retinal specialist, neurologist, my tmj arthritis doctor. but they dont find me one who will see me. I have a list of ones who take US Medicaid that i have since ive been too sick to work for years now. i called a few today, some were nice, but full up on medicaid patients, or dont take it. i made the mistake of calling a local group of rheumatologists. since they were listed as taking medicaid, & said they were taking new patients on their phone msg. i left a message, staff member called back and was nasty to me & lied saying they dont take medicaid, which i know they do. disheartening & demoralizing.
Anyway, i hope things get better for you. my feeling is your pred is too low. i felt horrible when i was on 40mg, then it was suggested i go down to 30mg, did that for day & 1/2, & knew i had to go back up to 40. two days later, doc put me back on 60mg & as far as i'm concerned saved my life.
If you don't have a rheumy to do the taper - there is no reason you can't do it yourself. But you DON'T do it in 10mg drops if that hasn't worked for you in the past. Do it in the smallest amount that is reasonable with the tablets you have - which should be 2mg at worst even on Medrol. 2mg steadily every week is still 8mg a month but without the major shock to the system 10mg presents.
If it still doesn't work - you haven't lost anything.
What do mean "refills"?You're on pred - so you must be getting it from someone? I meant just reduce in your own time using one of our suggestions - without worrying about your doctor supervising closely.
The blood markers are a bonus - it is symptoms you need to to go by and think yourself lucky you have those - some people don't have markers and their symptoms are unreliable until it is already flaring.
It would be medical negligence to NOT give you a prescription high enough to continue taking it and reduce slowly. Stopping high dose pred you have been on for more than a month suddenly could be life-threatening as your adrenal glands will be on holiday. You need a few months worth at the absolute minimum but you should start reducing carefully to see if symptoms return. But they MUST have a plan since they did a biopsy.
If it is the difference between retaining vision in your remaining eye and possibly not - there isn't always a lot of choice. Not always blacks and whites in PMR/GCA, especially GCA.
I went through a period of feeling really ille and it turned out to be because of the alendronic acid. Have you checked with your GP about the mometasone spray? It is usually contraindicated for someone with immune disorders such as autoimmune illnesses. Also some people react very badly to the omeprazole, which can have some rather bad side effects. Have you discussed how ill you feel with your GP? It may be that they can swap out a couple of your meds for something different to see if you feel any better. Please don't be despondent about the length of time you have to be on steroids. I didn't want to take them either at first, but once my symptoms were controlled I was actually glad of them.
Have only just been prescribed the higher dose omneprozole and the high dose antihistamine. Felt awful today but slept one and a half hours this afternoon and feeling quite a lot better. Also only just been given the spray. Doesn't help either.
Hi christine2715, like you I was diagnosed with GCA in March this year, 2 weeks after my 60th birthday. Instead of celebrating my birthday In Mexico I was in hospital where I was diagnosed and immediately put on 60mg prednisolone which more or less cured my horrendous head pains within hours. Two weeks later I had a negative biopsy result, but consultant stuck with the diagnosis due to my reaction to the pred. I was hoping I didn't and as a result managed to reduce the pred to 5mg by gradually reducing with 2.5 and 1mg tablets going up slightly if my head felt weird and then down again. However I had a massive flare 3 weeks ago (my own fault I realise after joining this forum after the flare up!) had to go up to 60 mg but am now down to 15mg again. I am staying on this dose under advice if my consultant for 4 weeks before trying again, but like you at the moment I am having problems with tiredness and weakness and a tightness around my head and feeling a bit low. I don't know about you but I think this is probably because I feel a bit out of control and depressed when I look in the mirror and see my puffy face! Whether it the amount of pred, the reduction of pred, the disease itself or a bit of depression (understandable with the disease we have and the seemingly lack of any answers given with any confidence by the medical profession) that makes us feel like this, I don't really know! All I know is that it is good to have this forum, I haven't posted before but felt I had to when I saw your post, and that we are not alone. I know it is possible to reduce the pred, my gp has now agreed to check my CRp levels every 4 weeks as I reduce so hopefully I don't get caught again (my CRP shot right up with my flare up but I know that is not the same for everybody) . It is difficult when you feel ill and want to do something, I try and prioritise and by kind to myself, if I want to go out in the evening I rest during the day and vice versa, depending on what's important to me. Oh, and say no to other people even if they don't really understand why you can't do something. Good luck with your progress, even if it is two steps forward and one back most of the time!
I don't want this to sound dismissive of your feelings about the puffy face you see in the mirror but without pred there is a fair chance you might not be able to see that puffy face in the mirror at all. Whatever the side effects of pred - and I won't deny there are plenty - there is not one that is worse than the ultimate side effect of GCA: irreversible blindness.
Thanks PMRPro, I have read lots of your post and replies on this site and they have been really helpful and always supportive. Yes, you are quite right a puffy face is nothing compared to the other problems especially, as you say, irreversible blindness. I think because your face is really the thing that other people notice ( apart from my partner who has noticed particularly my short temper!) it sometimes seems more important than it actually is, especially if you are having a bad day! I am lucky that I at present don't have any PMR symptoms and the good thing is that on pred osteo arthritis pain has all but disappeared. Thanks for your reply and please keep posting.
It's good to read others understand especially when you feel you are making little headway. I try to do only one thing each day, even two relatively small outings can cause me to be ill. Everyone suggests whatever medication you are taking might be the cause of your problems but it's hard to pin down what might be bad for you when you are being asked to take your meds and you are taking a cocktail of different things. Before GCA I hardly took a paracetamol.
This is a while since your kind post and I wanted to say I know what you mean about being overweight with a round fat face does make you depressed. I am two stone heavier and look awful, not helped by black hairs regularly springing from my fat chin. I feel so out of control. Thanks for your long reply.
Christine, I have PMR and so started on a lower dose of prednisone but also went through a period of time when I felt very low. A lose of lifestyle somewhat - not being able to trust your body to respond the way it always has, not being able to do what you're used to, side effect of the medication - it all builds up. I found cranial-sacral therapy very helpful in easing the "malaise" and helping me to feel more like myself again. I also did some classes on meditation and mindfulness. I didn't stick with it as much as I should have and am feeling like I need to get back to it. I think learning how to manage stress better is important as is living in the moment so that we can enjoy life when we are feeling ok, rather than worrying all the time. I also know that emotionally feeling poorly (teary, fatigue throughout the day) increases when I'm not on the correct level of medication. For me it's an indicator of needing to slow down, rest, and allow my body to adjust. At its worst it was a predictor of needing to increase my dosage. I hope you feel better soon, hang in there...
Thanks Toosore, I am not usually not one to get depressed but I have felt ill much of the time for several months with little help from the medics. I do get odd days feeling better, this evening a bit better after a long sleep. Have thought of either cranial or osteopathy especially as my neck is so stiff. Might give it a try.
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Is it polymyalgia or the steroids that are making me feel so ill?
Well I got down to 9mg of pred and went insane
Kerfufalmelodious
Medrol to Hydrocortisone for suspected steroid withdrawal?
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