I have had GCA for some time now -reduced dosage of preds from 15mg to 12.5mg on Sunday as advised by GP now feel really rough -

spaced out doesn't really describe it - keep falling asleep - severe headache over temple - balance gone to pot. Should I go back to 15mg - cannot mix tablets as only have 5mg and 2.5mg ones?

[Hidden]

Morning Margaret

I reduced my pred on Fri from 55mg to 50mg and got the 'really rough' feeling too, and still feeling it, although a bit better this morning, except for the headache. Yesterday so tired.. My understanding (although only had this condition for 5 weeks) is that many people get side effects when reducing and often have to tweek the reduction and sometimes go back up to the previous dose. I did when I went from 60mg - they reduced to 50mg, went back to 60mg for 1 week the dropped to 55mg for 2 weeks, now at 50mg.

Can you cut your 2.5mg's. Are you able to speak to your GP on the phone today to ask for advice?

Think you need to have a very easy day and get to speak to someone - other advice I have read is that many people only reduce by 1mg at a time when down to the dose you are on now - 2.5mg is quite a jump??

Hope this is not too garbled, don't feel like I am firing on all cylinders..

Hazel x

[Hidden]

Hi Margaret,

Yes, I agree with Hazel, your last drop was prob too big. I'd give it a couple more days, taking it as easy as you can because resting is essential. If no better then go back to 15mg and wait until you stablise. Ring your GP and say you need 1mg tabs because the drop was too much for you. Then come down by 1mg at a time.

You must have been on quite a high dose initially, therefore, the last thing you need is a flare in GCA. That would be a tragedy. It's just not worth it.

Hope you turn the corner soon, but you really need those 1mg tabs anyway.

Pats

[Hidden in reply to Hidden]

Thanks Pats, As the morning has gone on feeling a little bit better, I think as I had little sleep last night I just needed a good nap!. Still a bit shaky and headache has improved (if you can have such a thing as a good headache). Really don't want to go to GP - we are having a heated debate as I want to be referred to a rheumatologist and he can't see why and is reluctant to do this! Says he has to put it before his panel of Doctors first. I just a bit nervy when I get the headache over the temple so will see how I feel tomorrow before making a decision to contact the GP. Thanks for your help and support.

[Celtic PMRGCAuk volunteer]

Margaret50

If your GP is being reluctant about your request for referral to a rheumatologist, can you not ask to see a different GP in the practice - everyone suffering from GCA should be under the care of a rheumatologist. In fact, even in the case of 'just' PMR, the Patron of our National Organisation strongly advises that GPs should take at least one opinion from a rheumatologist.

I am glad that as the day has gone on you have started to feel a bit better and I hope this continues over the next few days as your body adjusts to the reduction in dose.

You will definitely need a supply of 1mg tablets as you reduce further down the doses in order to taper in smaller decrements.

[Hidden in reply to Celtic]

Thanks Celtc for your support. Fortunately the day has only improved so hopefully my body is readjusting to the reduction of preds. Actually managed to go out tonight for a meal with friends which helped. Laughter can do wonders! The chairperson of our support group is fully aware of the difficulties with the GP and is helping me to get a referral to a rheumatologist. The trouble with the GP and the practice is that they have to pay a fee for such a referral, hopefully they will agree to this shortly. Thanks again for your support - it means a lot to know that I have this.

[Celtic PMRGCAuk volunteer]

Margaret - so glad to hear that you have improved enough to enjoy a night out with your friends and yes, laughter is the best medicine as they say! So pleased also to hear you have the support of a group in your area. Good luck in getting a referral.

[Hidden]

Hi Margaret,

This fee GPs have to pay for a referral. How intereresting! I thought we had a National Health System. I can hardly believe this is true!

I must post this as a BLOG. If it is true then it accounts for the fact that so many GPs are reluctant to refer patients to specialists.

Pats

[mega in reply to Hidden]

Hello pats,

Call me an old cynic but I am convinced this is true. I went to my surgery in very early March with a myriad of symptoms and blood readings were 'deranged' to quote my GP. I was told I was 'unique' they'd never had a patient like me. None of the five doctors in the practice could nail it. Even so, it wasn't until after the new budgets came in, in early April, that I was referred, in late April, to the Oncology Haemotologist at the hospital, who was equally baffled I may add, but who finally suggested GCA at the end of May.

The oldies that I associate with treat this as a given! If you're going to get something that needs referral, make sure it's well before 'budget' day! We are, on the whole, benignly resigned to it but I would still have preferred three weeks of torture than three months, not to mention how close I was to blindnes, deafness or stroke.

Will the new 'GP controlled budget measures' improve things? I wonder.

[Hidden in reply to mega]

Mega,

Regarding doctors who are supposed to take care of you. Don't you get a sniff of something that's not quite as it should be? And yes, it is going to get worse. I think most of us realise that. CUT BACKS.

My approach to this is, don't present as an oldy. No matter what your age is. Prepare in advance so that you can answer every question precisely. Keep notes regarding your condition and learn them off by heart. Tell them what your symptoms are. Don't let them tell you. After all, our illness may not be common, but it can be hell to live with. Let them know it!

Pats.

[mega in reply to Hidden]

Thanks for your response pats.

I know you make sense. I DO write down my queries and my female doc is very amenable - very sympatico. Trouble is, I don't think she is a very good physician; she has never diagnosed/treated me first off with the few issues I've had prior to GCA and it wasn't her who diagnosed that.

I can be very complaining and aggressive until I step over her surgery threshold and then it all seems to evaporate! A bit of kindness and sympathy, which really does seem sincere, is a boost when you're feeling so very unwell and rather disarms one.

I have had GCA for twenty months now - hugely improved with the start of the dreaded steroids, I must say but no way free of symptoms - and am wishing my life away in anticipation of the two years' anniversary when it begins to diminish, (I hope) steroids or not!

I do feel it has been a hard journey I have taken primarily on my own and in future I shall certainly be a bit more demanding.

Good luck in your 'journey'.

Meg

[Hidden in reply to mega]

Hi Meg,

Your doc sounds very much like mine, OK until it comes to looking up the latest research or thinking outside the box.

I feel, therefore, that I have always to be one step ahead. I research every aspect of my illness and, boy, I let him know it.

I have met 3 doctors who have understood this condition since I developed PMR and I must say, it really showed. They all were more than able to give me precise guidence on the best treatment.

Unfortunately, my GP is not one of them, so I avoid him like the plague. Up to now my rheumy has been very supportive.

I really feel for you as you are fighting GCA and you obviously know what you are up against.

Try, if you can, to take a close friend or relative with you on visits to see doctors. They will be a witness to what is said to you, and the doctors will realise this and might be more considerate in what they advise.

The only advice that I can offer is, be really conservative with the drops in steroids. Prednisolone does take revenge it's true, but it's the best we have so, no matter what the so called pros say, go slowly!

Pats.

[mega]

Hello Margaret,

Only became aware of this forum after reading an article in Saga Magazine - the first one I've ever seen in a publication to mention GCA or Temporal Arteritis!

I started on 40mgs, 20 months ago, having taken 2.5 months of hell to come up with a diagnosis. I am still on 15/12.5 per day but my GP reduces the dose by a QUARTER of a tablet by starting with 15 mgs for two days & 12.5 mgs for one day. I am now on 15mgs for one & 12.5 for two and hopefully will increase the 12.5 days this week; she suggests I try the lower dose for two or three weeks each time. Even on that slow reduction I still get the headache and shooting neck pain back initially, but even one paracetamol (the only thing I can take) is usually enough to dispel it when it gets more than I want to bear. I agree with other posters that your dose reduction may be a bit too fast. I told my GP, a few visits ago, that my current life's ambition is to come off the blasted steroids, although I have to admit they were like a magic wand when I was first put on them. Patience is definitely a requirement! I very much hope yours are being better-managed by now and you are beginning to get your life back again.

Best wishes, Meg

[Hidden in reply to mega]

Hi Meg and thank you for responding to my query. You were fortunate my diagnosis took over a year before going on preds - I cannot seem to shift down from 15mg both my GP and Chemist say that preds are not issued in less than 2.5mgs! Have tried cutting in half and spent about 2 hours trying to find the pieces in case the cats found them! Now gone back to 15mg - feel a lot better. Problem is when I get the headaches and sight disorder I get frightened that my sight is going for good. My "urgent" appointment for a first visit to a Rheumatologist has just come through - roll on 31st October"! I hope then to get a clearer picture and treatment and more answers from him.

Thanks for your support - perhaps we can have a party when we are both clear of steroids.

Margaret

[mega in reply to Hidden]

Hello again Margaret,

You poor thing - to have to wait a year for a diagnosis and treatment is truly disgusting; three months was beginning to make me feel is it worth it! Apart from all the frightening things you learn after diagnosis, as you say.

I can only suggest again that you try two days on 15mgs and then one day on 12.5mgs, repeating until you feel comfortable with that and then try two days at the lower dose and one at the higher. Trying to reduce 2.5 mg tablets on a chopping board is something no-one should be asked to attempt! Especially if they're coated, as I have to have. Managing the dosage day-to-day can have the same result, without all those fragments over the worktop.

A whole month until your 'urgent' appointment - you despair, at times, don't you?

I think steroids are the only treatment available for this horrible condition though and researchers aren't that interested because it afflicts so few of us.

Like the sound of a celebratory 'end-of-steroids' party but guess I may be a bit older than you and, although I was fit and well before this manifested, fear I might need a zimmer frame before it's gone! I'll give it a go though!

I'm in East Sussex. Are you anywhere near there? Shall quite understand if you'd prefer not to say.

Meg

[Hidden in reply to Hidden]

Margaret,

When I was on 15mg I could only reduce by 1mg every 2 weeks. Any more and I was back in pain. Our ever diminishing NHS might not be allowing GPs to prescribe 1mg tabs, but believe me, they are made and available to any doctor who wishes to give them to his patients. I have 2 packs of them in my stock of pred.

My advice is - stay on 15mg until you see your rheumy. Their's is the power to over- ride any GP. It's not long now. Hang on in there.

Pats. By the way, uncoated pred is real cheap.

[Hidden]

Thanks Meg

I am in Cambridgeshire - I know how you feel about the Zimmer Frame - feet very swollen and legs very wobbly (not going to give my age away on this site in case the age police are looking!!!

Thanks again for your support.

Margaret

[mega]

Margaret - I also have swollen legs, result of the steroids I presume. If the illness doesn't get you the treatment will!!

I lived in Cambridgeshire until eight years ago, within striking distance of Addenbrokes' hospital; times like this I wish I still did.

DO try to reduce your dose more slowly, though.

Good luck.

Maga

[Sharonsspot]

...this advice is from several people. They are not Doctors and should not be relied on instead of your Doctor.

Ok ladies.. When the going gets tough the tough get going! Get help to reduce the pain... A lot of this, is taken from a lady who has helped hundreds of us with PMR. But it is not all from her, so this is not quoting her. It seems to me that many of you are under the impression that, having taken steroids for a while you can taper the dose down to a low enough level to stop taking them altogether. This is what happens if you have to take steroids for asthma or a severe chest infection and for some other short-lived ailments.

In the case of PMR the steroids ARE NOT CURING THE INFLAMMATION ACTIVITY. They are reducing the inflammation to a level where you can function as near normal as possible. The fatigue aspect of the PMR does not change markedly and that remains something that is individual to you and will vary. There is no cure for PMR at present. You have to take this into consideration and decide whether you want to be an invalid until the PMR goes into remission on its own account or whether you will take steroids to make a reasonably normal life possible.

Many doctors will still tell you that PMR will "burn itself out" in a couple of years. This is not true. Some patients may have it for more than a couple of years and then it goes into remission. They may not need medication at this time, but it can return after a periods of months or years. Other people may find that they can get down to a low dose of steroids (5mg per day or less) but cannot go below a certain dose without the pain and stiffness returning.

Anyone who has been started on steroids to control the symptoms should try to get the dose down to the lowest possible level and as quickly as possible. However, this does NOT mean 15mg a day this week, 10mg a day next week, and so on until you stop taking it after a couple of months. What is meant is that you take 15mg or 20 mg a day (this is the recommended starting dose and if it is PMR you should show a good response within a few days) continue for perhaps a month or maybe more until the pain and stiffness is at a minimum. Then you can try reducing the daily dose. ( some people can only take 1 mg or .5 mg reductions).

In the UK the prednisolone tablets come as 5 and 2.5mg enteric-coated pills which cause fewer stomach problems but cannot be cut and 1mg plain white tablets which can be cut. In Canada it comes in 5 mg which can be cut to 2.5 and 1 mg which can be cut to .5 mg. This makes it possible to make combinations of pills to go down .5mg or 2.5mg in a reduction. If you reduce from 15 to 12.5 this represents a 17% drop in dose which is quite big but also quite possible at this level for most people , but for some it cannot be cut down that fast or by that dose without causing alot of pain. So if you are reducing 1 mg every few months, that still is getting you to the goal.

Once you have reached 10 mg per day you should aim for the drop to be as small as possible for various reasons. After a while your body has "forgotten" how to respond to the need for steroids and if the blood level falls below what is needed for all the body processes that it is involved in it won't automatically make some of its own and you suffer from the symptoms of "steroid withdrawal". This isn't addiction - it is just your body takes quite some time to relearn what it has to do and you have to look after it in the meantime.

To go down from 10mg you really should never reduce by more than 1 mg or .5 mg and make the transition from 10mg to 9 mg slowly. So maybe take 10 mg on Monday and Tuesday, 9 mg on Wednesday and 10 mg on Thursday and Friday, 9 mg on Saturday and Sunday. This should be done for at least a week or longer. If you feel good at that, try alternating the doses as 10mg on Mon/9mg on Tues/10 mg on Wed/9 mg on Thurs/10mg on Friday and so on. If that's still good, drop to taking 9mg a couple days in a row, then 10 mg for a day.. or drop right down to 9 mg. every day. Stay at that for a month or more until you make sure that you are still comfortable. You may have a bit of discomfort for a week or so which is due to the steroid dose change, but it will improve and should disappear in that time.

If you find the pain comes back and gets steadily worse over the next few weeks that is much more likely to be because the PMR is not being suppressed by the new dose. In this case go back to the dose that did work - you might not need to go back to 10mg every day, maybe on alternate days. But alot of times people need to go to a higher dose then before to get it under control, so it is best to do this slowly the first time.

Every time you try reducing the dose ..if the PMR pain returns - that is the dose at which you need to stick for some time before trying again to reduce. This may be 15 mg, 12 mg or 10 mg. It may be that you find that you are OK at 7mg a day, but 1 mg lower, you have pain and stiffness and cannot function. The best thing to do at this level is to accept it at 7 - (for a while at least) as this doses side-effects are minimal for most people. It is similar to the level your body produces anyway to make it function properly.

Some people think that one cause of PMR may be that the body is not making enough cortisol, the natural steroid, so the dose we need is just replacing it - like diabetics need insulin because their body doesn't make enough and the fact that PMR often starts after a stressful event or you get more symptoms in periods where you are being stressed in some way, either mentally or physically, would fit with this theory.

There is no merit in reducing the steroid dose to a level where the PMR symptoms return at a high level. If you are going to do that you might as well say from the start well, I'll just live with the pain. Taking a low dose of steroid just to say it's lower and I'm nearly able to stop altogether is pointless. You will have achieved nothing in the end.

Some people do not lose bone density whilst taking steroids. Some people lose bone density even though they have never taken steroids. Once you are at about 7-10 mg a day the loss of bone density is minimal providing you give your body a chance: take calcium and vitamin D supplements so the raw materials are there. Calcium should be taken in at least 2 separate doses, not within 2 to 3 hours of your steroid dose (they interfere with one another) and preferably one at night and with other food. Even a healthy young person loses a very very small amount of bone density overnight and taking some calcium just before bed helps this! So, steroids for breakfast, calcium for lunch and supper. Inactivity is the worst cause of losing bone density - so if you think about it, not taking steroids may well mean you can't do anything but sit in a chair and read a book - someone has mentioned in another thread that that is about all she can do now that she is at a very low dose of steroids. That too will make her lose bone density. So, are you any better off? No steroids but you can't function? Bone density can be monitored, it used to be called a dexa scan. But not everyone with osteoporosis breaks a leg anyway.

Each patient who is diagnosed with PMR has a choice to make: take steroids and live without unbearable pain, or don't take steroids and be an invalid and in pain most of the time. But don't allow a doctor to force you to take too low a dose to achieve relief or fall into the trap of believing it is virtuous not to take the medication that allows you to have a life, just because you might get osteoporosis. Doctors don't understand the pain as they've never had to suffer it. A rheumatoid arthritis sufferer with twisted hands and feet gets sympathy from most people..., the ones where there is no joint deformation yet, tend not to get that sympathy. And we with PMR look well, you can't see stiffness, pain in a joint and fatigue - and that fatigue isn't just being tired after a lot of work, it's there before you even get out of bed! It's still real!

However here it is as I was told. Once you reach 5mg, you are now going into a higher percentage drop. Work out the math (good for your brain). It becomes a long slow process (possible 1/2 mg reductions). And sometimes this can take up to a year to get down. If a ‘flare’ occurs go back up to the one previous, (ie) if on 4mg, go up 1mg,... if that does not work, go back up in one mg until you are comfortable and then try again. But be guided by your own GP or Consultant Rheumatologist as they know your own circumstances as everybody is different and may have other medical problems to control.

Remember PMR and/or GCA go when they want to and not when you want them too. Both have a mind of their own. Steroids do not cure, they give you a better quality of life. Even though they come with their side effects. Remember those side effects can be alleviated to some degree and the good news is that not everybody gets the side effects and I have not come across anyone who has had them all.

As I said in the first of the article...this advice is from several people. They are not Doctors and should not be relied on instead of your Doctor. Your Doctor knows your health and is the one person to work with to help with this disease. This is just good information for us to know and possibley follow with your Doctor.

Take Care and God Bless (((Gentle Hugs)))

Sharon on polymyalga facebook

[Hoogli in reply to Sharonsspot]

Thank you Sharon, your article is very helpful, and has given me a lot to focus on. Subjects to discuss with my doctors, just to let them know I am taking notice of what is going on with me. Sometimes you don't have the words as you feel so unwell.

Judy