My friend is on 65mg of pred. steroids. I read that he needs a low salt and low fat diet. Also he needs to eat foods with potassium and he should take Vitamin D. Should he speak to his GP even though the steroids are being managed by his neurologist? Or should he buy over the counter Vitamin D etc?
Thank you all.
Hi and welcome! Do you feel able to share why he is on 65mg pred? Is it likely to be a long term requirement for high dose pred?
We would disagree on the low fat diet - why was that suggested as the best option and by whom? Low salt is often a good idea as pred tends to make you retain fluid and salt increases the effect.
Low fat inevitably means high carb and high carb is the worst thing to eat when on pred at any dose and particularly higher doses. Pred triggers the liver to release random spikes of glucose into the blood from body stores in muscle and liver. That is the underlying cause of steroid-induced diabetes in some patients and while you can do nothing to reduce its effect, you can reduce the contribution to blood sugar levels of your diet which you do have control of. It also helps reduce the hunger pangs that drive patients on steroids to eat and eat - and gain weight.
Suspected GCA -so yes long term.
So it is - the reference to neurologist made me assume it could be something else.
Yes - me too…
Agree with PMRpro -re low fat and salt,
He should have been prescribed Calcium/VitaminD supplement along with the Pred - for bone protection.
You do need to speak to GP.
Note - if he is offered Alendronic Acid he should request a DEXA scan to see if it’s necessary. For many AA is not required-the supplement is sufficient.
Has your friend been diagnosed with PMR or GCA or is he on steroids for something else? Steroids are prescribed for around two hundred different ailments. Normally quite short term, but in the case of PMR and GCA longer term.
I read about the potassium and salt online. I shouldn’t Google!
He’s under the neurologist because he has a slow growing tumour in his pituitary gland. Also, there is inflammation to the optic nerve although he was told that they didn’t think the pituitary was touching it. Maybe the sight loss was due to GCA in the first place with corresponding inflammation to the pituitary stalk.
When he got to the neurologist’s , he had jaw and (by then) neck pain. He had a shocking headache and he could feel the pressure around his temples. He couldn’t lie down to sleep because his scalp was so sore. He was so sore around the jaw that he wasn’t even able to eat a sandwich.
He went on steroids a week today . At first, the pain was 9/10, now it’s about 6.5/10. He was given tablets to protect his stomach.
He’s had bloods done and is awaiting results. Plus, he’s awaiting a biopsy of the temporal artery. The neurologist has marked it urgent. I’m not holding my breath,
He hasn’t been to see the GP but I’ll ask him to book.
The neurologist says it’s GCA. The biopsy is to confirm the diagnosis.
I see what you mean about low carb. I’ll tell him that.
Many thanks all.
Don’t put too much store by the biopsy result if it’s negative. A positive seals the diagnosis but there are various reasons a false negative can occur. All the time he is on high dose Pred reduces the chances of any giant cells being detectable. The bind is that Pred must not be withheld while waiting for obvious reasons. The biopsy involves removing a piece of non-essential and close to the surface artery in the temple. Giant cells can be missed because they are not in the artery harvested but somewhere else. The sample needs to be a minimum of 1cm long and the surgeon skilled in maxillofacial surgery. Mine was negative but I was treated as GCA because of symptoms and good response to Pred.
I'll tell him that. His neurologist knew two weeks before he was actually seen when there was a telephone appointment. I just can't understand why he wasn't given Pred sooner. He has had a further deterioration of his sight. Incidentally, he's been doubled over with kidney pain a few times this week. It might or might not have something to do with the steroids or his disease. Have you heard of this by chance? Thanks so much.
Do you mean pain in the kidney area? Is it new? What is it like? Acutely painful or nagging? Constant?
High dose Pred does make one susceptible to infections so it’s worth getting it seem to. There are other diagnoses too of course.
It's acute, in episodes. I've asked him to call his GP tomorrow. Also, speak to his neurologist's secretary. He seems to find some relief by bringing his feet up towards his chest. The sooner he sorts things out, the better. Many thanks.
I sent you a Chat message.
Obviously complex issues, but the basics are, yes, Vitamin D for sure, and I recommend Vitamin K2 (not K1) as it sends calcium to the bones, which D doesn't do, so both are important to maintain bone density. Also, giving up most if not all "white" carbs (sugar, wheat, etc, especially sweet things), and eating good quality protein and vegetables can help prevent increase in blood sugar and weight gain. Basically a healthy balanced diet, with special attention paid to avoiding empty calories.
Provided his other conditions don't contraindicate this, it's important to drink enough fluids. Many of us older people don't drink enough water. Yes, tea and coffee count as fluids, but avoid soda pop and fruit juices (even low calorie ones, because artificial sweeteners are not good for us).
All the best to him. 🍀
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