And along came.........

[Elaine-W]

Hi all,

I had been having a good spell and managed to get down to 22.5. The magic number I reached last time before a flare sent me back up again.

My blood pressure increased and I was told to buy a monitor. Went to the doc as I was comcerned. She asked me if she would regret taking it in the surgery. 182/95. Started immediately on blood pressure tablet. It has thankfully settled down. Got a phone call from GP re blood test. Blood sugar 37 and diabetes is diagnosed at 38. I eat low carb and don't eat anything sweet except the odd piece of fruit. Doc agrees there isn't much I can do about it for myself. I am well from the GCA point of view. The pred truly is a wonder/devil drug. I refuse to let myself derail my recovery with negativity. Hopefully it will all settle as I reduce further. The reminder of how horrible a flare is will prevent me from rushing through drops. I will fight the urge. Anyway the sun is shining, the birds are singing and we will all get through this.

Take care everyone 👍🏻🌞😎

[DorsetLady PMRGCAuk volunteer]

Hi Elaine-W,

Good attitude!

Hopefully as you reduce Pred, and begin to get a little more mobile -nothing too drastic - you will find that your blood pressure and your blood sugars return to normality. Mine did!

I had high blood pressure long before GCA/Pred - all that stress I guess, but now its lower than it's ever been and I've reduced the dosage of medication.

Hang in there!

[Elaine-W in reply to DorsetLady]

Thank you very much for your support. I hope you are welll these days. Xx

[DorsetLady PMRGCAuk volunteer in reply to Elaine-W]

Yep. Good at the moment thanks. 🤞

[PMRpro Ambassador]

All the best - hopefully this time you won't flare. I've had high blood pressure - well managed on pills. It even gets a bit TOO low now and again as I reduce the pred!

[Elaine-W in reply to PMRpro]

Thank you for your reply. I tell myself knowledge is power. this forum really is a life line and I appreciate you all xx

[SheffieldJane]

Hi Elaine-W, you are right to be cautious PMR has an unhappy knack of slapping us down when we get a bit too bouncy. Like you I'm hoping that the high blood pressure and the threatening Diabetes diminish along with the Pred dose. I was much naughtier than you with the chocolate so hopefully I have a margin to improve in.

[jinasc]

Just to say, it is not uncommon with GCA to have two flares in the first 18 months.

I had two and then steady as she goes and into remission after 5 years of GCA and now coming up to 7th year.

[Elaine-W in reply to jinasc]

Hi Sambucca

Five years is such a long time. Were you on a very small dose of pred in he last few years?

[jinasc in reply to Elaine-W]

In the great scheme of things, 5 years is not uncommon.

The current BSR Guidelines on the Diagnosis and Treatment of GCA state:

"The mean duration of glucocorticosteroid treatment is between 2 and 3 years"

Over the past 10 years, I have only known 3 people who went into remission within those guidelines.

This does not mean that my observation is the correct one, as we only hear from the people who do not have complicated PMR and GCA and we do not hear from the patients who 'sail' through it.

Sometimes, because of the age range we do not make contact with others as they do not use the internet. Some of us were too old when the internet came along, or were in jobs where they did not need to know about it and it was very expensive at the beginning. Now kids are into it practically before they are born. So the world we are living in continues to change.

I missed this bit in your post:

"Blood sugar 37 and diabetes is diagnosed at 38. I eat low carb and don't eat anything sweet except the odd piece of fruit. Doc agrees there isn't much I can do about it for myself."

You might like to follow this link as well.

pmr-gca-northeast.org.uk/as...

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[Elaine-W in reply to jinasc]

Thank you Sambucca for your reply and the most informative information about Diabetes. Once again I am amazed by the knowledge shared on this group. I am in a good place at the moment and have been working towards a two year stretch. Will try to slip into my thinking that it may be a good deal longer.

Thank you once again

[Jackoh in reply to jinasc]

For me that's very encouraging Sambucca.

Jackie x