Mum has joined the pred club thanks to GCA
Posted , 8 users are following.
About 2 months ago my 89 yr old mother was diagnosed as having temporal arteritis and since then it’s been such a stressful time for us. Despite her age she has remarkably good health with her only main problem being age macular degeneration.
Her initial symptoms were very mild temporal headache and lack of appetite. Her GP told her to take paracetamol initially but as the second blood test results came back he asked for her to see him that same day. This in itself was a very stressful day as in the morning I took her to a funeral of a long time family friend. Immediately after the funeral we had her doctor’s appointment where he told her that she had suspected temporal arteritis and that she would need to have a biopsy in the very near future.
I drove her home and within minutes of walking through the door the GP surgery rang to say that the GP wants me to go back and collect a prescription which she will need to start taking immediately. I’m sure many of you can relate to this but it was such a scary time.
I picked the prescription up and asked to speak to the GP for more information as we hadn’t been told anything other than she needed to start taking the tablets immediately (they hadn’t even told me over the phone what the tablets were or what they were for). Only due to my persistence did the receptionist arrange for me to speak to the GP where he then explained to me about the immediate need for my mum to start taking the steroids.
he look on the pharmacist’s face when he realised my mum would be taking 12 (60 mg) of steroids a day stressed me out even further.
My mum’s latest ECR test showed inflammation count was down to 3 from 65.
However, she has massive daily struggles coping with the medicine.
She’s now down to 40mg a day plus two Accrete Calcium tablets plus Alendronic Acid once a week.
Her energy levels are taking a pummelling. When she first wakes she is so confused and suffers from brain fog that only starts to lift a bit once she has something to eat and starts chatting to me (I visit her every morning).
She now sleeps a LOT during the day taking long naps. The brain fog comes and goes but never seems to be as bad as it is in the morning. She’s acutely aware that her mind is foggy and this is causing her a great deal of upset and anxiety. She seems to pick up a little by the evening but I’m very concerned that her quality of life at the moment has taken a nose dive since taking the steroids.
She has frequent dizzy spells during the day where she actually feels she is going to pass out which exacerbates her anxiety. It doesn’t help that due to her age she doesn’t have many friends left around the same age as her so her days are spent alone probably stewing in her own anxiety and feeling sorry for herself.
She also has wobbly legs and jittery stomach at times.
I’ve refrained from visiting too many forums as a lot of the information is upsetting to read from people who are taking prednisolone. I have tried to rationalise this by telling myself that people are generally only motivated to search the internet, register for forums and post articles when they have a bad experience to share or seek answers to problems they are experiencing. Nevertheless, it’s hard not to get weighed down with negative thoughts when the majority of forums tell you what terrible experiences people have had on this medication.
I read somewhere that some people split their pred dose or take it later in the day and I was wondering if this could help my mum as this might restrict the side effects to when she is asleep. It seems some GP’s are happy for this to be done but when I spoke to my mum’s GP he was quite adamant that the dose should not be split and be taken only in the morning.
I’ve also heard people being seen by a rheumatologist and wondered if this is normal procedure or would you have to pay privately for this ?
My mother hasn’t been given any bone density tests or blood sugar tests so we have no idea what the base line figures should be. She wasn’t even advised by her GP to have her eyes checked and it was only after a few weeks and having read some information on the internet that I realised the importance of my mum having her eyes tested since the diagnosis.
I basically feel that we’re left alone to handle the effects of the medicine ourselves and although my mum has always had great faith in this particular GP I am beginning to have some doubts.
Does anyone know if the brain fog and energy levels improve as the dosage tapers or are these side effects constant throughout the treatment ?
0 likes, 40 replies
Anhaga mark45745
Posted
So sorry to hear about your mother's problems. How fortunate she is to have a caring person such as yourself to make sure things go well for her. She was put on the Alendronic Acid along with the pred, without a previous DXA scan? This is probably not helping her particularly. I understand it's less effective in older people, even those few for whom it is actually necessary. So she could consider discontinuing that medication, at least for the time being, and just carry on with her calcium and, more important probably, Vitamin D.
For GCA it is important, at least at the beginning, that the dosage not be split. It's required because major anti-inflammatory effect needs to be in place to prevent the possibility of vision loss. My understanding is that as this is controlled then people are allowed to split the dose, and of course the total dose will also be reduced, just not too soon. I'm not sure why the gp insists the dose be taken only in the morning. If he thinks this will protect adrenal function, well, just being on pred for more than a month is going to mean the adrenals will have decided not to produce cortisol, no matter what time of day the pred is taken. On the other hand, evening pred can disturb sleep, so a morning dose probably is wisest at least until things settle down somewhat. Certainly it would have been a kindness on the doctor's part to give your mother and you more information.
Others with more expertise about GCA will be along to give more complete suggestions. All the best!
ptolemy mark45745
Posted
Dear Mark, it does seem that your GP has leapt into action which is definitely on the plus side when you hear some of the horror stories of diagnosis or should I say lack of it. It does look like the pred has worked.
If your mother has GCA she should definitely see a rheumatologist organised by your GP, this is not always necessary for PMR only. As you say at some point she should have a Dexascan as a side effect of steroids is osteoporosis, ask her GP. She should also be taking vit D and calcium supplements for this. She should be able to get these on prescription.
Unfortunately pred has over eighty side effects including brain fog while extreme fatigue tends to be a symptom of autoimmune illnesses. Taking the tablets early morning, ideally around 4.30am but later is OK if this sounds a bit daunting. I have heard that it is not advisable to split the dose and take it at different times for GCA, but I may be wrong.
Your mother should have regular blood tests including the inflammation markers CRP and ESR. Also occasionally she should have other tests such as glucose, full blood test, vitamin D level, U & E. There are probably some others as well which may be of interest.
You can can get larger tablets than 5mg which reduces the number she needs to take in one go. They are pretty pricey so your GP may say no.
I hope your mother is feeling better.
EileenH mark45745
Posted
I'll be brief for the moment - I've just lost a long-ish post! Welcome! I know you don't want to be here!
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
This is a link to the front page which has a list of all old posts - and the second pinned post is our reading list. There is also a forum on HealthUnlocked you might be interested in. These are two forums that you won't get only negatives about steroids from - there is the occasional person who tries to tell us how evil they are - but we know we have a life thanks to pred and are still able to see in some cases. They are our good friends.
You are in the UK I assume - where are you? There are support groups and if we know where you are we may be able to recommend a rheumy - because your mother needs a rheumy. The GP who knows enough about GCA to manage a patient alone is a rare bird! And I really can't say I'm impressed by your description of your mother's management thus far. Patients may be less well educated than the GP (or not but we won't argue) but courtesy demands your mother's doctor should inform you what is going on and why.
First of all, as the others have said, GCA needs to be managed with a single daily dose - the high spike of pred in the blood is needed to keep the inflammation under control. So, sorry, but for the moment it needs to remain as it is. As the dose is reduced and she is on pred longer the side effects will improve but it isn't going to be a quick fix.
Over time we will explain to you what is going on but it is too much to do tonight and you'd be overwhelmed. How long is it since she was put on pred - and was/has a biopsy been arranged, since he mentioned it? How long was she at 60mg?
Like Anhaga, I'm sceptical about the value of the alendronic acid and for the moment she might do better if all unnecessary medication were to be stopped - polypharmacy is not good for elderly patients and at the age of 89 I personally would count it possibly surplus to requirements, certainly for the short term. Just one point there too - did the GP check her calcium and vit D levels before starting the alendronic acid? If they are not correct the alendonic acid will not work - and I'd lay odds a lady of 89 has a pretty low vit D - but I'd love to be proved wrong! They must be put right first.
Things will improve but this is not a short illness your mother has - you are looking at years rather than months on pred and it is going to be hard work, I won't pretend otherwise.
But this and the HealthUnlocked forums are a haven for you. Come and ask us questions - preferably one or two at a time so the responses are simpler, for your sake too. There will be someone about most of the time, this one in particular is very internation with members in Europe and the USA and even a few in Australia!
mark45745 EileenH
Posted
First of all, thankyou for your replies so far.
I can confirm that my mother has not had any DXA scan. Are you suggesting that Alendronic Acid is usually prescribed if there is evidence of bone loss or is it prescribed as a default supplement to the pred to help prevent bone loss ?
Do we need the GP to green light my mum to stop taking the Alendronic Acid and could her side effects be caused by this ? Would you consider Alendronic Acid to be unnecessary ?
Upon questioning by me I was able to find from the GP that morning is the preferred time for the pred dose as it mimics the body's natural functions (??). I have also heard that taking pred later in the day can cause sleep problems but what about taking it earlier in the morning ? Curently she takes them around 8am-is there a chance that the side effects may wear off sooner in the daytime if she takes the preds at 4:30 in the morning ?
Do I have to request or even insist that the GP refers my mother to a rheumatologist ? Should the GP not be doing this of his own volition ?
Her biopsy came back negative but we were told beforehand that a biopsy is not always conclusive and I have heard from someone else who has GCA that their doctor didn't even bother with a biopsy as they don't really tell you much.
Do I have to ask for her to have a DXA scan too ?
The fatigue and general feeling of lifelessness is possibly exacerbated by loneliness and boredom as her social network has shrunk over the years and her AMD makes it hard for her to do things that she once did during the day time. Being alone all day alone is not much fun for someone in good health and younger years let alone someone who is 89 !
She does get very stressed about the changes she's having to deal with since taking the tablets. The fatigue was never a problem up until the time she started taking the preds. The jittery stomach, dizzy spells, brain fog have only kicked in since her medication started.
Her last blood test was 4 weeks ago and she hasn't been asked to arrange any appointments for any future blood tests hence why I am getting a little nervy about the management of my mum's health by her GP. After the biopsy results the GP told us to reduce the preds by one every two weeks and when she gets to six then to see him again-this time frame is around 3-4 months !!
Do I need to be pressing for these tests to be made and is this also good reason for a rheumatologist to be involved (presuming her GP agrees to this) ?
We are based in Bolton. I think she was on 60 mg for around two weeks.
I am not sure if my mum's calcium and vitamin D levels were checked on her previous blood tests. If they were then we haven't been told what they were. I guess I need to ask him if this has been done but it looks like we are going to come across as "pushy patients" as far as our GP is concerned. I'm not really bothered as it's my mum and not his but would welcome some advice on how to diplomatically suggest to a doctor that he should be doing things differently.
The brain fog is what is really hitting her hard. I try to reassure her that things will start to get better especially as her dose comes down but I can't honestly say if I'm giving her false hope or not.
ptolemy mark45745
Posted
My feeling is that you should not take Alendronic Acid unless it is shown you need it. I have stand up rows with my GP who thinks I should take it because I am on steroids. If one does take AA it is now suggested it should only be for around two years. I would definitely not take it without a Dexascan.
If your mother finds it difficult to wake up before 8am she can take the pred then, she could try taking it earlier and see if it improves things. We do vary on what is best for us.
As your mother has GCA I would insist on her seeing a rheumatologist, it is not an illness to be sneezed at and the average GP has very little knowledge about it. Ideally you should find a rheumatologist who is knowledgable about GCA.
If your mother was already on steroids when she had the biopsy the chances of it being negative are pretty high. It is also possible even if she had not taken steroids at the time. They may have tested the wrong bit!
Yes definitely ask her doctor for her to have a Dexascan.
It is important that your mother rests and takes things easy, but if you can think of some way you can make her life more interesting. What about an iPad?
Initially she should have blood tests pretty frequently, at least once a month. My GP has never really done much about blood tests, I just book them myself and no one has said anything yet. You could always ask your GP about how often you should book a blood test.
She can always have a vitamin D test when she has her next blood test. The important thing is she should start taking vitamin D and calcium now. Calcium needs vitamin D to absorb properly in the body. It is all in one tablet.
I always ask for a printout of my blood tests. I have found them very useful over a period of time.
All side effects improve as the dose is reduced thank goodness.
.
Anhaga mark45745
Posted
Typing at same time as Ptolemy, but I'll send on my two cents worth anyway - Hi Mark. I'll address the questions about AA. First of all, unlike pred, the alendronic acid can be stopped at any time without harm. Secondly it should never be prescribed without a proven need for it. It's actually not supposed to be used to prevent possible bone thinning effects. It's preferred use would be to help someone with a diagnosis of significant osteoporosis, and at that it should only be taken for two or three years. Many people have taken it for longer but it's becoming more and more apparent that after the first couple of years the chances of bad side effects begin to outweigh any benefits and best practice now is to limit its use in the ways I mentioned. Your mother would do much better to optimize her nutrition and take a few select supplements - the calcium and D3 of course, but K2 is another important one. Most things can be got from a good diet, but I know in the elderly absorption is often a problem so advice from a dietitian could be helpful.
Just in case Europe is asleep I'll just venture to remark on one of your other questions. Regarding time of taking dose, morning is best. The recommendation is usually before about 8 am because that does, indeed, mimic the natural body rhythm. However many people do take their dose earlier, often at 4;30, and provided it's taken with some food to protect the stomach that should not be a problem. A lot of people find a helping of yogurt is sufficient at that time.
Side effects will diminish as the dose is tapered, although many of us find that fatigue remains an issue and may be as much a part of the disease as it is of prednisone side effects.
The doctor may have been very good in handling many of the more common ailments, but GCA may be beyond his competence. My understanding is that although the less serious related condition, PMR, is easily managed by a good GP, GCA is nearly always referred to a rheumatologist. You and your mother should not feel guilty about seeking specialist care and a good doctor should not feel he has failed if he cannot manage what is a rather mysterious and not very common condition.
Silver49 mark45745
Posted
I am sorry to read that your mother has GCA. I know others have given helpful information. I appreciate how difficult it must be for you both. I note someone mentioned an iPad but if your mother's Macular Degeneration is advanced then any form of reading etc is problematic if not impossible. Does your mother enjoy books on CD? The local library may be able to provide. I also wonder if there has been contact with a sight impaired charity as they can assist with aids. I realise your mother's sight may not be so impaired. Your mother would be entitled to a social work assessment and perhaps they can arrange or advise on social stimulation . It is always difficult reaching an age where one's peer group is diminishing through frailty and death. In Scotland there are a number of small charities who actively help with older people. It may be that your mother is a very private person but even a phone call from you to the social work dept. can give you some idea of what may be available. Age UK is also worth a contact.
mark45745 Silver49
Posted
You're right. She would be unable to operate an Ipad due to age but mostly her eyesight. Blurry eyesight caused by the preds doesn't help either !
We had contacted the local sensory centre a couple of years ago and she received a few things they thought might help but to be honest they don't really help her that much anymore.
We're in the process of doing everything we can to support her including arranging a befriending volunteer to visit her from Age Concern, getting a social services assessment etc
She does have an e-reader which she used to read every evening but since taking the preds she has lost interest.
@Ptolemy-I think we will wait until she is seen by a rheumatologist before stopping the AA. I wouldn't want to stop her taking something until we get some medical clearance for it. Having said that I am VERY eager for her to stop taking anything that may be unnecessary and that also has multiple side effects !!!
You're 100 % right about the biopsy-even her GP told us after that a negative result could be down to the fact that they tested the part of the artery that wasn't affected. Makes me wonder why they insisted on doing it in the first place as the stress of having to wait 9 hours for the procedure did nothing for our stress levels in an already stressful week.
My mother and myself are a little concerned that she doesn't sleep too much during the day but I'm torn between this and thinking that maybe she just needs to rest. Sleep has always been a defence mechanism for my mum when she was under stress.
I'm trying to be really impartial but I don't think it's her GCA that is making her so tired. I think she takes those naps to escape the foggy head. She only started doing this after taking the preds.
When you ask for the blood tests how do you know what to look for in the results ? Should the medical team not be doing this for you (us) ?
I know it's difficuly when someone is 89 years old to think far ahead into the future but if there is some hope that things will start to improve then it will certainly help her to know this.....and me !
@Anhaga Where do we get advice from a dietician from ? Is this something we have to seek out ourselves ?
Sorry for all the questions but although I love our NHS there are occasions when you see all the cracks in the system and I'm not used to having to navigate them.
mark45745
Posted
The more I read about Alendronic Acid the more I see connections between her symptoms and it's side effects.
I had naively dismissed the AA as a factor as I thought with my mum only having to take it once a week then it couldn't possibly be giving her problems six days after her dose.
Her next weekly does of AA is this coming Saturday morning and I am debating whether we skip her dose for this week to see if she improves during the week.
Beyond that I am not that comfortable her skipping any further AA doses without some alternative being prescribed to her. She only currently takes Accrete D3 tablets with her preds
EileenH mark45745
Posted
I'll have another go - computer problems and I have lost large chunks of post twice now so I haven't a clue what I've said and what not! Luckily the others have answered many of the points!
Accrete is a calcium and vit D supplement - which has been adequate for many of us without using alendronic acid. I don't think either of us are suggesting dispensing with all consideration of medication to "protect" from osteoporosis but we are suggesting that in the short term removing all unnecessary medication just might clarify where problems lie. It is all very well starting an elderly patient on multiple medications all at once - but when things seem problematic you simply can't tell where from. She must have the pred, there is no question about that, but the others are presently less important. I would certainly leave the AA for one week - I don't care what they try to tell you about "bones will crumble" - they won't in a period of a few weeks. If the stuff is making her less "well" in general - that alone is an increased risk for falls and fractures. Bone density does not fall apart overnight!
Let her sleep - sleep is amazing healer and she needs it. While she is asleep her body is able to concentrate on healing. The pred probably keeps her awake at night when you aren't there - or makes her sleep quality poor.
Dealing with the GP? Request an expert second opinion. It is your right and the guidelines DO suggest patients should be under an expert. GPs are not experts - the clue is in the name!
There is a northwest of England charity - google northwest PMRGCA charity and you will get a link to their website. I have asked the moderator to add it to the reading list but it hasn't happened yet. Contact them and they should be able to point you in the direction of a suitable rheumy.
Anhaga is in Canada. In the UK you may find there is a dietician attached to the practice but how long you may have to wait for an appointment is anyone's guess these days. Be careful who you choose if you go privately - anyone can term themselves a "nutritionist" and set up in business. Some of them are on a par with Ms Paltrow when it comes to real knowledge!
Don't write off 89 year olds and iPads - there is a lady on another forum in her 90s who juggles her devices far better than I can, and I'm 30 years younger! But her vision is a greater problem in that respect.
Your head must be spinning by now! Good luck - and I do hope your mum is improving.
ptolemy mark45745
Posted
Dear Mark, at least your mother is also taking Accrete D3 as well as AA. As you say you could just skip one dose of AA and see if it makes a difference, but it is nice to have back up from her rheumatologist. I think it is important she gets a `Dexascan soon, as then at least you will know if she really needs AA.
Fatigue is really different to being sleepy. You just feel shattered and so resting and say listening to music helps.
I agree about doing biopsies that they do when they know they will probably be negative and you have all the symptoms of GCA. I think it is something to do with the tick off mentality we seem to adopt nowadays.
When I ask for blood tests the nurse and I decide on any extra ones apart from ESR and CRP that we could do. I think I may be becoming a blood test nerd. The results come back and one of the doctors looks at the results and writes comments if there is something odd, such as telephone us or make an appointment. I must admit recently my CRP went up from 12 to 132 and I had a panic phone call to come in immediately. They have taken more interest in my blood tests since then. Goodness knows why it increased so much I did not have any extra symptoms. It may be a better idea to remind your GP about blood tests as they tend to forget rather than taking my devil may care approach.
My sister's godmother had GCA when she was 69, she is still alive at 96. There should be no difference to everyone else once the disease has gone into remission.
I have not not been ill since I was 10 years old and had measles, I have never had antibiotics and never bought a painkiller over the counter. So my dealings with the NHS have been a real eye opener. I could write a paper on how they could improve things, mainly improved communications, a decent computer system and some good management. Saying that every now and then you do come across a little gem amongst the general chaos.
mark45745 ptolemy
Posted
Thank you for helping
Reading up on this I am very inclined for her to skip her weekly AA dose this Saturday and see if she improves.
Would one week away from AA be enough to determine if her side effects were AA-related ?
I just popped in to see her again this lunchtime and she was very unhappy. Jittery stomach, dizziness to the point of feeling faint, lifelessness and no energy. She seems to stay in the chair for most of the day not having anything to distract her mind from how lousy she is feeling. When she walks around the house and starts feeling dizzy then I think it just encourages her to return to the armchair. Even making the dinner is a big chore for her at the moment.
I agree sleep is a great healer but she doesn't want to vegetate all day either. The brain fog just clouds her mind so she doesn't have much interest in anything. It's a real concern as she doesn't have any quality of life at the moment.
As you rightly say it is impossible to determine at the moment what is causing this change in her and I'm hoping that we may see some improvement if the AA is missed.
I think someone suggested that fatigue is a symptom of auto-immune disease but you can draw a curtain on her demeanour pre-medication and post-medication and see a distinct difference from the time she started taking meds.
I'm hoping things improve as me and my wife have already started discussing the option of one of us giving up work to try and support her more.
EileenH mark45745
Posted
What other medication is she on? I do wish doctors would just change one parameter at a time!
I think you would probably see a result after 2 weeks- since AA is a weekly medication. As I say, a month without it won't do any lasting damage. And it is by no means the only option - there are monthly, 6-monthly and even annual bisphosphonates.
If a patient is to be put on AA they are supposed to do blood tests first and to advise them to see a dentist to be sure there is no work that needs to be done before the AA. Many dentists won't touch patients on AA. This isn't an acute problem so a few weeks before starting it is no problem.
ptolemy mark45745
Posted
Hi Mark
If the problems started after your mother started taking medication you have probably found the guilty party. Steroids have an enormous amount of side effects over eighty. Look them up and see how many refer to your mother. GPs will sometimes give more medication to help the side effects. Look up the Alendronic Acid too. Some people have to come off AA because of the problems. It may be worth phoning your mother's GP to say you are going to do a test on dropping the AA for a week. I am not sure how long you need to see if they are causing the problem.
I am sorry I cannot be more positive but your mother has a nasty disease, which is not particularly well known by many doctors. The trouble is you are comparing your mother with how she was before and what she has can be life changing. I know I had to give up an awful lot of things and learn to say no. Things should get better once she reduces the pred.
Anhaga mark45745
Posted
I don't know what your community is like, but where I live there are options for people to get out of the house. Where your mother is dizzy and fatigued she would need transportation of course, and no outing should be more than an hour or so. I'm thinking about a seniors centre we have where people can drop in and have a cup of tea and chat with whomever else might be there. They may have lunches, that sort of thing. There is the public library where if nothing else you can sit and read a book, newspaper or magazine, and at least it's a change of scene. Getting outdoors and watching people or, it you're lucky, ducks or water, can really lift the spirits. I have always found nature to be a great healer even when in the depths of rather profound, although not clinical, depression. And the best thing about this particular ailment is that it does get better. It's not life threatening. Life changing, yes, and that's an adjustment harder for some than others, but things don't have to be worse, just different. That will come.
And if she's too tired to read, there are audiobooks. Has she had hobbies in the past? Maybe she'd enjoy a sketchbook and some nice pens or pencils? One doesn't have to be an artist to enjoy the pleasure of creating something.
Anhaga mark45745
Posted
Sorry, I don't live in the UK but I'm sure someone will be able to answer your question about consulting a dietitian. Here (Nova Scotia) at the present time although I think this will change over the next few years I can only see a dietitian privately. The cost is not covered either by public or our particular private insurance. But as one or two sessions are usually all one would need it could be doable, depending on the cost of a session. Other professionals who are not covered here, such as podiatrists or physiotherapists, charge $65 per visit or somewhat more for an initial visit which includes time for evaluation. Possibly where you live your GP can refer you to someone.
Anhaga
Posted
Just read above about your mother's diminished eyesight. My aunt has lost most of her ability to read and she listens to audiobooks on a special machine which seems to wrok very simply, like a radio. Even less complicated than a cd player. And creative pursuits are possible even for the visually disabled, if she is interested. Something tactile like decorating cookies, tending to a little windowbox garden, a pet, if that's possible.
EileenH mark45745
Posted
I am sending you a link to a paper called "Osteoporosis: the emperor has no clothes" using the private message option as the link will be captured for moderation.
In it, it says there is no evidence of benefit of AA for over 80 year olds. Which for your mother's case speaks for itself I think.