A few developments - anybody got similar

[Investigator1]

Don’t want to bore you all but I have had a couple of developments recently apart from having my Rituximab extended for another year. Firstly I am on statins since last Thursday, I am fit, I get out, eat a low carb/high fibre diet but my cholesterol is around 7 so it just shows you. No after effects yet.

Secondly it looks might I may need to go back onto steroids, not Prednisolone but Hydrocortisone. I have been feeling a bit dodgy in a morning if I don’t get enough sleep and if I get stressed (fortunately not very often) I feel a bit unwell. I mentioned it to my Consultant and she arranged a test on my Adrenal Glands, it seems I am not producing enough Cortisol, possibly a result of my Pred use when I was diagnosed and 18 months thereafter.

I’m not too bothered, it’s just another challenge, it it makes me feel better then that’s good.

On a funny note to end, I was in Bedale North Yorkshire on Market Day last Tuesday, I was having my Rituximab the following day so got on the pushbike and got out. Unfortunately for me on the way I got drenched as the heavens opened. Anyway when I got there I decided to visit the public loos to get dried down and reorganised then get myself something to eat. So I am sat in the public car park under a shelter eating my Cheese Salad Roll when I realised Blimey! I havnt put my cycle top back on, it’s still in the loos with my mobile in it. Dashed back to the loos (about 1/4/mile to find them locked up, like within 30 mins they had closed. What do I do, I stood there thinking, better ring the Council, can’t! Council office closed 2 years ago, non starter. I was totally and utterly flummoxed at what to do, I had no cash only cards so couldn’t call my wife. Then after about 10 minutes of panic a voice behind me said “is this yours” seeing me in cycle gear holding my jacket aloft was the cleaner who had returned to reopen. Phew! It struck me when I got home how reliant we are on mobiles. Years ago I wouldn’t have had one, so no problems.

Take care all. Nick.

[PMRpro]

Do you have any numbers for your adrenal test?

[Investigator1 in reply to PMRpro]

Hi PMRpro I havnt the numbers yet for the test on Wednesday which I am expecting a conversation to take place this week. On Wednesday I had the more advanced synacthen stimulation test , however initially in February it was a blood test and the reading was 280 at 11am. My Consultant says (she is a renal consultant so I am lucky there) 300 rules out Addisons but she wanted a proper test at 09am. To be honest PMPpro I am not fretting over it, if it means steroids then as she says it only putting in what I am not producing and if it makes me feel better and regulates my body better then it’s the best thing for me. Funny thing here when I had my Rituximab just after that they gave me the standard steroid and paracetamol just prior. I think it was 20mg but don’t quote me, anyway the day after (Thursday) I got up and it was like I had been attached to jump leads. I got out and did a 5 mile power walk in 65 mins. I had so much energy. So it’s wait and see at the minute. Nick.

[PMRpro in reply to Investigator1]

I know a lot of longterm pred patients who would be delighted to have 280 as their basal cortisol level!! (Basal cortisol can be taken any time between 9am and 1pm) How long have you been off pred? It can take up to a year after finishing pred altogether before it properly settles,

The other thing is that a lot of former pred patients find they struggle with HC, different side effects, and both HC and pred are approved of for managing adrenal insufficiency. If your body was happy on a low dose of pred, it is used to it and might well be worth considering.

And yes - 20mg pred would have triggered a lot of cleaning so very pleased you chose to use it for a walk!!!!

[Investigator1 in reply to PMRpro]

All makes sense what you’re saying. Been off Pred since October 2021 but if I’m honest December 2022 was when I got the first thoughts about things not being right so just over a year after. An incident happened that Christmas when somebody sent some texts saying they didn’t like thier presents and were giving them away. That really upset me and soon after started feeling ill. I thought I was just being a Drama Queen so got on with things and it seemed to settle me. Some people eh.

[PMRpro in reply to Investigator1]

I suppose that is one of those instances where a text is REALLY not the way to impart such a message! To me that is just rude and even if they thought they were awful, which I doubt they were, they didn't have to SAY it. "If you can't say something nice, don't say it at all ..."

But yes, low cortisol does knock you for six when you experience a situation like that. I have had meltdowns over perceiving someone being a bit aggressive in a situation that wasn't really that bad. In the meantime, I have learned to just shrug and move on. Mostly!!!

[Investigator1 in reply to PMRpro]

Wow! That is really helpful, sometimes I make wrong perceptions about situations and get a bit battered by myself until, like you say you shrug and move on.

[PMRpro in reply to Investigator1]

I think anything written - a text, on the forum - should be read several times aloud with different tones of voice. And often you realise that actually - it wasn't as nasty or sharp as you first thought. Maybe the person felt the presents would benefit someone else rather than languishing in a bottom drawer but wanted to explain why they weren't on display when you visited. People just don't think about how others hear them sometimes. Including me - I write very plainly on the forum, and do get newbies totally misunderstanding what I meant. Sorry, can't do touchy-feely writing, can't change after 70 years of plain speaking!!!

[Investigator1 in reply to PMRpro]

Good for you!

[eh66]

Hi Nick

I am in remission and not on any infusion protocol. I was only on Steroids for 3-4 months, which I didn't enjoy. I couldn't sleep and they increased my appetite substantially.

Currently I am on a statin and Ramipril. According to my consultant these aren't for cholesterol and blood pressure, which are normal, but have other long term effects that are good for Vasculitis. I have also been on Cotrimoxazole, an antibiotic which I think is protecting my damaged sinus, but the consultant reckons I should be off them within the year. I have also recently started Dapagliflozin again for its long term effects.

I am off to see the vampire and consultant this week for a 6 monthly check up, so things might change.

[Investigator1 in reply to eh66]

Well done. Good to hear.