Side Effects

[HeronNS]

I've been operating under the impression that the lower the dose of pred, the fewer and less intense the side effects will be. But is the chance of developing side effects also based on the length of time one is on the medication? So would the chances of developing, say, glaucoma, become higher as the months go by, even though one's dose might be halved in that time?

[polkadotcom]

I've never worked it out on that basis. If the visible side effects diminish as the dose reduces I've always thought the invisible ones should, too. Hmmm - I suppose in some respects it may leave you a little more likely to get the add-ons, but I don't know what the percentages might be, low is what I feel.

[DorsetLady PMRGCAuk volunteer]

From my experience, glaucoma was caused at higher doses. I started at 80mg, and the glaucoma appeared when I got down to about 25mg, some 2 Years in. The pressures were never at a dangerous level, and were monitored for about a year, by which time the levels had returned to normal and the Pred was into single figures.

If you are worried, then book an eye test with the optician explaining you are on Pred and concerned that you may be liable to glaucoma.

[piglette]

My optometrist said that glaucoma tends to appear quite early on with steroids, but cataracts can happen any time. He may be wrong of course.

[HeronNS]

I have got an appointment booked for early in the new year. It's not just the eyes, it's everything else. For example I understand that pred continues to affect the bones even when you are down to practically nothing. I suppose there is a cumulative effect, like the cumulative effect of a lifetime of radiation on one's chances of getting radiation-caused diseases? Could the long term ingestion of pred have a permanent effect on other body organs, one's ability to balance hormones, etc.? Or, again, would it be like smoking, the moment you've quit you *start* to recover?

[PMRpro Ambassador]

To some extent the side effects are based on the total dose of pred - so if you are on half the dose for double the time, the risk MAY be the same. But not everyone gets the side effects, some get none. You cannot predict what you will have, you have to be watchful - get eye checks to be sure your are not developing high ocular pressures or cataracts, blood tests etc for diabetes, cholesterol and so on. Some will reverse as your dose reduces, others remain a possibility as long as you are on pred. But not one of the common ones is as bad as going blind if you have GCA - and as a patient with PMR, I have yet to meet a side effect that is as bad as the constant pain and disability.

I think you should stop trying to analyse it all. I have been on pred for over 6 years. I had some temporary side effects while on Medrol, all of them have gone (weight gain, high cholesterol, mad hair and skin). I have no change in bone density, no signs of diabetes at any time, no eye pressure changes. I was on well above 10mg for the best part of 4 years, well above that some of the time. As long as you monitor the possibilities they will be caught - and can be dealt with.

[HeronNS in reply to PMRpro]

Thanks. There is no way I will stop asking questions. I came into the world to question everything! I also want to find answers. I guess that is why I used to work in a library. 😀

[PMRpro Ambassador in reply to HeronNS]

No, don't stop asking the questions - but don't get too hung up on the answers to them!

[HeronNS in reply to PMRpro]

Both questions and answers remain fluid - one leads to the other. It appears to me that once everything is sorted then it's game over. One's purpose has been achieved.

Thank you for your kind and patient advice.

Happy holidays! 🎄❄

[nannyjc]

I have been on Steroids for 61/2 years now, 60 mg at the highest and fluctuating up and down many times. Now maintaining, seemingly forever, on 5mg. The side-effects of all this are numerous. 1. I have lost 6 inches in height. 2. I have suffered (completely unknown by anyone until an X-ray) many spine fractures due to loss of bone density. 3. Scoliosis of the spine is the result. 4. My right lung is compressed to the extent that I have breathing difficulties and am now registered disabled and have to use a rollator to be able to do any walking. 5. I have had cateract ops on both eyes and within a few months laser treatment on both eyes. 6. I have developed gallstones, caused my doctor says by fat gathering round tiny remnants of Adcal tablet in my gallbladder. That's enough to be going on with!!!

.And I still have GCA/PMR after all this time. I know this because of the blood results and if I try to reduce below 5mg all the pains return.

[HeronNS in reply to nannyjc]

Oh my goodness, that is a terrible shame. Did you not get proper counsel regarding your bone health when you started on prednisone? I know some of the other things, like cataracts, aren't anything we can do much about. But your experience does make it seem even more imperative that research be done to find safe and effective ways to reduce dependence on prednisone.

[nannyjc]

When you are diagnosed with GCA/PMR and put on steroids, and you have had no experience of steroids before, you don't question your doctor's belief that these pills will do the trick. I wasn't even told that they not a CURE, rather a mask as I think of it. And no I didn't receive any counselling. I was not referred to any consultant until my doctor eventually sent me to a rheumatology. I have had infrequent bone density scans and after 5 years of deterioration I now have a very expensive 6 monthly injection.

Incidentally I am 73 years old, which must be a factor.

[HeronNS in reply to nannyjc]

Hi Nannyjc. Although I have received some scolding for asking too many questions I guess there is some advantage to still being, deep inside, the three-year-old who questions everything. I have great skepticism regarding the medical establishment, in spite of being the daughter of doctors, and having for most of my adult life had a terrific GP (who retired literally a week before I became an interesting patient). I think it is my eternal questioning that has helped me stay as healthy as I have. One does wonder why doctors seem so ignorant about some things. Like you, I believed that once the pain was gone, I was cured, and the reason for the slow weaning was to make sure symptoms didn't recur. I understood that reasoning, having experienced total relapse after using cortisone ointments and learning (on my own, not from a doctor) to slowly discontinue their use and add non-steroid lotions. It wasn't until I discovered the Patient forum in the middle of a sleepless night that I learned I was not cured, and far from being off steroids by September I was likely to be on them indefinitely!

I agree that there is a distinct lack of interest in helping older people stay healthy. There are a lot of complaints about what a drain baby boomers are going to be on the health care system, but so far very little is being done to ensure that we remain as healthy as possible for as long as we can. And I really do not understand why an effective protocol to help PMR patients reduce their systemic inflammation does not exist. Prednisone is not enough, and we want to be off it as soon as we can, but we are really not offered any alternatives. Yet there must be strategies most of us could follow that would help us achieve a really low dose much more quickly.

[PMRpro Ambassador in reply to HeronNS]

It isn't as simple as that - the systemic inflammation is due to an underlying autoimmune disorder that is continually active and producing new inflammation every day. Only when that underlying disorder burns out will you be able to manage without pred. The mechanism isn't known - without knowing the mechanism you can't say "do this", "do that" or even develop a drug that will work on it and make it better. You do have one - the one you are complaining about, pred. It reduces the systemic inflammation that does the damage. That is exactly why it is used. Whatever its downsides for some people it works pretty well to do what you are asking it to.

No drug comes without side effects. The action it has for one disease may be an unwanted side effect in another. It looks likely - if the rumours are to be believed - that there is a drug that can replace pred in GCA: tocilizumab (Actrema). A monoclonal antibody, a biologic, already used in RA. But it is kept for last resorts because it is VERY expensive to manufacture (sells for $17,000 per year) and some of its potential side effects make those of pred look mild.

There is plenty of information out there about helping us live well into old age - there is loads of scientific evidence that regular exercise, managing your weight at a healthy level and avoiding certain lifestyle choices will reduce the likelihood of developing Type 2 diabetes, cancers and a whole range of other illnesses. And when it is mentioned in the media - what does everybody do? They groan and ignore it.

But even when they don't drink, don't smoke, exercise, eat sensibly - people still die of nasty diseases. The human body has a lot of potential things to go wrong and go wrong they do.

[PMRpro Ambassador in reply to nannyjc]

It depends how you look at "not a cure" - in GCA it doesn't just mask things, it reduces the swelling in the blood vessels and does help avoid the risk of going totally blind which is a very real factor for many people with GCA. Any patient with GCA that affects the arteries in the head is in that category. Whatever the side effects, most of them are not worse than being blind. Even cataracts can be removed and once done that is usually it unless you are unlucky enough to have the film form that your laser surgery was for. GCA blindness is irreversible - and if one eye fails first, even if high dose pred is initiated immediately the second eye mostly goes soon after.

So in that sense - pred DOES do the trick. There are side effects yes - and your GP was remiss in not monitoring for that. Loss of height in a older patient is a pretty sure sign of vertebral fractures so any doctor who sees a patient regularly should recognise that far sooner than after 6in height loss - that is what your family doctor is for. You cannot really blame pred for his failings.

There is not yet another option for preventing the damage that GCA can do, to the eyes and the rest of the cardiovascular system - a clinical trial is about to report. If the rumours are correct there will be an alternative to pred - but then it will have to be approved. And if you think your antiosteoporosis medication is pricey - tocilizumab costs about $17,000 a year. So whether the healthcare fundholders in any country will pay for it in GCA remains to be seen.

[HeronNS]

Hi PMRpro. I think your two replies are one for me and one for Nannyjc? I am not saying there are alternatives to prednisone, and as you could probably guess I would not be in favour of another (relatively untried) allopathic chemical, just that if the disease is inflammation, whatever its cause, there *should* be an effort made to find non-toxic ways to reduce that inflammation. There are so many things we can do to reduce chances of getting other diseases, or mitigating their effects if we get them, it seems extraordinary that there appears to be, according to the official medical stance, nothing for inflammation. I know you and other advisors on this forum have had so much more experience and have more medical information than I can ever hope to get, but surely to goodness if we humans can take close up pictures of Pluto, or squeeze oil out of stones, we should be able to figure out the bodily processes that are going on that make us ill. ✨🎄✨

[HeronNS]

Actually, while I'm at it, I will ask if other people find they have more fatigue when they get down to the 7 mg level or so? I've been feeling really knackered the last day or so.