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
mark45745
Posted
Well, we skipped the Alendronic Acid on Saturday morning and will see what effect, if any, this might have. I'm not sure how long to wait before being able to say that the AA is out of her system.
The last few days haven't been good to her at all however as extreme dizziness and brain fog is making her extremely anxious and fearful.
I will try to ring the GP tomorrow morning but we can only make same day appointments within a 30 min time window which creates a bottle neck for all other patients wanting to do the same
mark45745
Posted
It's now been five days since we skipped her weekly Alendronic Acid tablet and almost two weeks since she last took it but I can't say I've seen any improvement in her at all recently.
The last weekend has been especially bad in terms of low energy, dizziness and brain fog.
Our appointment on Monday with her GP resulted in him agreeing with my suggestion for a rheumatologist referral but when I rang the appointments line I was told there was a waiting list upto 70 days.
My mum's been so poorly over the last week that I have even considered going private but I can imagine that getting very expensive very quickly as blood tests and bone scans etc will need to be performed. I thought about having an initial private consultation but unsure if that will be worth it.
EileenH mark45745
Posted
It depends who you see.It also depends where you are - have I asked?
Since your mother is suspected to have GCA your GP has actually been very remiss in not referring your mother as an EMERGENCY patient - directly to the hospital with a phone call and letter. GCA is a MEDICAL EMERGENCY in exactly the same way as a stroke or heart attack. Even 15 years ago, my optometrist in Scotland rang the local hospital to warn them he was sending a query GCA patient to Admissions and they would have a letter with his results. There was no need for a fast-track set up. However, in the meantime there are hospials in the UK who have got a fast-track arrangement. The trouble is - the GPs don't bother to inform themselves.
Almost all private rheumatologists are in NHS hsopitals too and having seen a patient will add them to their NHS list to reduce ongoing costs. The first appointment is the most expensive obviously and follow-up is less costly. Still not cheap though.
As a first question what area are you in? Maybe you have a local fast-track arrangement but that is up to the GP to sort out, not tell the patient to go via Choose and Book because they are too lazy to do it themselves. C&B is NOT for emergencies.
EileenH
Posted
ptolemy mark45745
Posted
Hi Mark, I went to a rheumatologist privately initially as my GP kept saying I had a virus. However I had all my blood tests done at my GP's surgery and the Dexascan done on the NHS.
mark45745
Posted
We are based in Bolton.
When GCA was suspected he put her on the 60mg of preds and arranged the biopsy for two days later (which was a waste of time and stress in my opinion).
He did not refer her for an optometrist exam and did not even suggest it. It was only when I started reading about GCA on the internet that I realised the importance. On further discussion he suggested it would be sensible for my mum to have her eyes tested which we had to arrange ourselves with her own optician after making the optician aware of the recent diagnosis of GCA.
Is GCA still classed as a medical emergency two months after diagnosis ?
EileenH mark45745
Posted
If she is still having visual symptoms or her condition is worsening despite pred - I would say so. yes, I remember you saying you were in Bolton now - have you contacted the NW charity? They have close contact with consultant rheumatologists and possibly could help. Choose and book is for routine and urgent referral - and that is NOT good enough for GCA. But I can't influence it in any way.
Either Bristol or Bath hospital's fast-track has two levels - the GP can speak to and get advice about how to refer someone who doesn't fit the criteria for emergency fast-track. But speaking to an expert is essential I'd say - GPs are NOT adequately trained for this. Don't care what he thinks - unless of course he worked as a rheumy in an earlier life. But I doubt that somehow!
mark45745
Posted
I thought I would share my update as there have been a number of developments.
My mum's energy levels, letheragy and dizzy spells have not really improved.
First of, her GP rang after her latest blood results to tell us that my mum is Vitamin D deficient and has prescribed some booster supplements which she will take once a week.
We had an appointment with him yesterday and was told that her Vitamin B12 levels are also below the norm and she has started a series of Vit B12 injections yesterday.
He had recently referred us to a rheumatologist but the appointment is in two months time. He offered to write again to speed the process up.
As our appointment late yesterday afternoon was wrapping up I asked the GP what her blood sugar levels were. He checked his screen and said her blood wasn't tested on the last round of blood tests but mentioned that my mother never had a problem with her blood sugar so can see no reason why this should change. He arranged for the nurse to do a quick blood test for her sugar prior to the Vitamin B12 injection.
My mum's sugar level came back very high and I heard the nurse tell my mum that she is "probably diabetic". I asked the nurse whether this could be steroid related (although I already knew the answer) and she replied it could be. I also asked if there is a chance the elevated sugar levels could return to normal after the prednisolone has reduced/stopped and she said that no-it would likely be permanent (which isn't what I have read-why can't medical staff just say "I don't know" if they don't know?).
So there we have it. On top of everything else it looks like my mum has now got diabetes from the steroids and the one over-riding thing I am learning from this journey is that YOU MUST MANAGE YOUR OWN HEALTH. A good GP is there to support you and direct you but they are not experts on every condition. If you have the interest and desire to learn more about a condition then there comes a point where the knowledge gap between the patient and the doctor closes considerably.
We await to see what the future brings....
My mum will have another blood test
Silver49 mark45745
Posted
It's a shame it wasn't all checked previously but from what the tests have shown and with the treatment I would think your mother will show improvement and, hopefully, begin to feel better quite soon. It is good that she has you to support her and also advocate for her. It is difficult for those have no one. I hope you will soon see your mother more like she had been though she may have to guard against doing too much. I'm sure Eileen will be along with wiser words.
EileenH mark45745
Posted
"my mother never had a problem with her blood sugar so can see no reason why this should change."
REALLY????? Your elderly patient is on high dose pred and there is no reason why her BS should change? I think I'd be looking for a better GP because his record so far has not been particularly good. He didn't refer a query GCA patient as an emergency, he has her on alendronic acid which is of doubtful use in patients over 80 and is adding another layer of side effects to an already comprehensive assortment and didn't check B12 and vit D at the outset as well as BS routinely. Sorry - not impressed.
Silver49 EileenH
Posted
I agree, Eileen. I would have thought these would have been fairly obvious checks in someone of this lady's age but I'm not medically qualified though worked long enough within the NHS setting to have seen GPs check this routinely.
Anhaga Silver49
Posted
Even my scatterbrained gp has checked my blood sugar regularly! The problem sometimes is when you've been going to a doctor for a long time and there is a level of trust, it is very hard to say I want another opinion. In this case I do think Mark needs to really take charge and make sure she gets seen by a specialist asap.
Anhaga mark45745
Posted
Although I'm not as old as your mother I am getting up there. My blood sugar went high early on, but not quite high enough to need any medication. I brought it down to a good level, simply by eliminating nearly all carbs from grain and sugar. I did continue eating vegetables and fruit as I needed the nutririon in them, and am also very thin so needed calories from things like root vegetables. Your mother should perhaps also cut back on portions of root vegetables for the time being, things like potatoes, carrots, parsnips. But getting rid of bread and bowls of cereal made a huge difference for me. I also got a hint from a dietitian - when eating carbs also have a high protein food at the same time. So, as a vegetarian, my diet suddenly got rather full of eggs, nuts and seeds. My breakfast used to be a huge bowl of cereal with milk and a cup of tea. Now I eat 1/3 c pumpkin seeds, an orange, two eggs and a cup of tea. Find I really like this breakfast and it wasn't as hard to break the habit of a lifetime as I expected. Bedtime snack varies, but it used to be a bowl of cereal and isn't any more. Nor is there a lunchtime sandwich. i do miss easy suppers made with pasta, but you can't have everything!
mark45745 EileenH
Posted
I had naively assumed that the blood tests the GP ordered for my mum after her diagnosis would include checks on all risk factors associated with the condition and in particular the steroids.
Can steroid induced diabetes be prevented ?
Do we accept any meds they may prescribe for her blood sugar ?
All I can do and control is what happens from this point on but I am becoming more convinced that my mum's tiredness, lethargy, brain fog and dizziness are all down to the prednisolone.
I'm even suspecting that the Vitamin D deficiency and vitamin B12 deficiency are down to the steroids.
Very frustrating that the side effects on the meds all overlap e.g.
Vitamin D deficiency symptoms are:
brain fog
muscle weakness
fatigue
Vitamin B12 deficiency symptoms are:
brain fog
dizziness
fatigue
anxiety
Prednisolone side effects are:
brain fog
dizziness
fatigue anxiety
She had a very good day on Mon and Tues but now has sunk back into the pattern of previous weeks where she just wants to sleep and is getting very stressed about the brain fog.
EileenH mark45745
Posted
Vit D deficiency won't be due to the steroids - it is very commonly found in autoimmune disorders in general but whether it is cause or effect isn't known. B12 deficiency can also be due to autoimmune disorders as well as dietary lack. The trouble is those side effects are actually found with large numbers of causes so you can't tag them to one or another when several are present.
There is no direct way of preventing steroid-induced diabetes - in some people, but not all, the pred causes the liver to release spikes of glucose into the blood and that then fulfils some of the criteria for diabetes. The simple BS measurement is fairly meaningless and a much better indicator is the HBa1c measurement which reflect the average BS levels over the previous 3 months or so. If the person eats a lot of carbohydrates the BS spikes after eating and the random spikes may tip them over the levels that are taken as diabetes. Technically you should use the medications because long term raised blood sugars levels are not good for the body tissues and can lead to various conditions. However, you can help the situation a lot by reducing carbohydrate intake drastically - little carbs in the diet mean overall lower BS levels.
Not wishing to be rude about a professional - but I will say again that I don't think your mother's care has been particularly good. But I'm also not entirely surprised - care of the elderly in the UK is pretty poor in general. And you would be surprised how ignorant some GPs seem to be - as I say, his comment about never having had BS problems meant he didn't expect problems was mind-boggling!
All you can do at present is to make sure the vit D and B12 deficiencies are addressed asap - injections may be the best approach in both cases. The vit D will take a few weeks at least, perhaps longer to show a result. That will reduce the components that may be due to them.
Some of your mother's status may be the pred - but in GCA she also has a serious systemic disease. If she had been diagnosed with something else you might not have been so surprised at how unwell she is but GCA is a long term underlying autoimmune disorder that makes patients feel as if they have flu for months, sometimes years, until it goes into remission but on the surface they often don't look ill. The pred relieves the inflammation and protects her vision by keeping the blood flow to the optic nerve adequate. But it does nothing for the actual autoimmune disorder - nothing does as yet and all that can be done is manage the symptoms.
I don't want to sound harsh - but your mum is an elderly lady who has a serious illness. You are going to have to come to terms with that fact I think.
mark45745 EileenH
Posted
If we all just accepted the illness and everything it brings then I suppose there wouldn't be many people on this forum seeking advice and understanding.
Regardless of whether the GP has failed her in some way doesnt negate the fact that by me NOT accepting everything I hear or am told has resulted in him listening to my request for her blood sugar to be tested.
By trying to learn and understand more about the condition puts us in a better position to manage it.
Everyone who has GCA doesnt react the same way.
EileenH mark45745
Posted
"If we all just accepted the illness and everything it brings then I suppose there wouldn't be many people on this forum seeking advice and understanding."
Possibly - but most of us are in our 60s and 70s. Advancing age brings other problems when it comes to serious illness. That is all I was trying to convey.
ptolemy mark45745
Posted
Hi Mark, your mother's doctor should have tested her blood sugar anyway as a matter of course and also other blood tests from time to time as well as ESR and CRP. I think the main fatigue may actually be due to the illness rather than blaming the vit D and B12. What are your mother's readings for vit D and vit B12?
mark45745 ptolemy
Posted
Hi
You may be right but the symptoms she displays started only when she started taking the preds.
The point I was trying to make is that is is extremely difficult to tag her symptoms to one thing as preds, lack of vitamin d and lack of b12 can all cause the symptoms she has been displaying.
Afraid I don't have the blood readings to hand.
EileenH mark45745
Posted