reduction and big blood pressure drop on standing

[lennysmummy]

Hi. My consultant has got me dropping again 1mg but I have a big problem that I didn’t before. Every time I stand I feel like I’m going to pass out, blood pressure is dropping on standing and I’m literally having to crawl on my knees to let it pass. Will this just stop happening after a few days? 🙏

[DorsetLady PMRGCAuk volunteer]

What dose are you on? If in single figures could be adrenals, but if BP reading are low, then it does need checking….

[lennysmummy in reply to DorsetLady]

I’ve been made to drop from 9 to 8. All bloods apart from last June have been normal. She also had another load of bloods taken last Thursday to do with c3 and c4 also diabetes bloods. She’s adamant she wants me off. My blood pressure drops to about 95/60 on standing. Normally it’s between 130 to 155. If this is just something that will pass then ok but I am sure she would have seen the blood results by now if something else was going on wouldn’t she? I am at a loss. She wants me on 8 which I’m sorry but took another half today for 3 weeks and then drop to 7. 🙈

[PMRpro Ambassador in reply to lennysmummy]

She may want you off pred but it isn;t her who can dictate - before you can get off pred now, your adrenal function must start to work again - and that takes time. Months at least, not weeks.

[lennysmummy in reply to PMRpro]

yes I know that but she feels she knows best…. I don’t. 😏

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

She might want you lower-but unfortunately PMR isn’t at her beck and call…. do wish some doctors would realise it’s not as easy as they think!

Agree with PMRpro comments about getting it checked if it continues

[lennysmummy in reply to DorsetLady]

There is no sign to her that suggests PMR just the positive biopsy for gca. I think it’s because of the stomach problems and waiting on another endoscopy she feels they are doing me more harm.

[DorsetLady PMRGCAuk volunteer in reply to lennysmummy]

Well as you have GCA then she should be even more cautious on reducing….

[lennysmummy in reply to DorsetLady]

According to her the mri was great. Bloods are all fine…. So she just sees me in 3 months and I should be on nearly 5. Can’t see it myself.

[Suffererc in reply to lennysmummy]

that is dictating to a patient who we are told knows their own body best. I had this problem with my GP wanting me off steroids. She asked 4 times for me to see a Rheumatologist (I didn’t want to) when I was on 1.5 and been on steroids 5 years. His letter to her was that I was doing well. She shut up now 😂🤣😂🤣😂

[lennysmummy in reply to Suffererc]

well I spoke to her secretary yesterday, she is saying it’s nothing to do with steroids or tapering. Just come down as requested. I’m just hoping the giddiness will start to wear off. Maybe the heat is playing a part.. who knows? Again all bloods from last week normal. 😏

[PMRpro Ambassador]

Take it slowly when getting up and make sure there is something to hold on to and a seat if you need it. If it persists for more than a few days - which would suggest it is just your body adjusting to the new dose - then speak to your doctor because there could be something else going on and it is just coincidence.

[piglette]

The same thing happened to me when I was on around 6mg. I could not make breakfast without having to go and sit down in the middle. I did actually pass out several times too though not at home but when I was out. I even passed out at the check out in Waitrose! People stepped over me. I think it was due to my adrenals.

[lennysmummy in reply to piglette]

How long did it last for? I’m absolutely petrified to go outside. This feels like everything is spinning and I am just going to go down, that’s why I make it onto my knees until I can crawl so sit down again. 🙏

[piglette in reply to lennysmummy]

Months. The medics decided it must be heart problems and I went through months of tests. In the end they could not think of anything else, although adrenals were never mentioned. It was really bad at around 6mg when I kept fainting. When I am at home I am OK as I can just sit down. I still find it happens, but not so bad and I have not actually passed out for a while. I find it can be bad in the morning and I noted my diastolic BP is in the 50s. I have found the only answer is to stop what I am doing and rest.

[Sophiestree in reply to piglette]

I shouldn't laugh, but people stepped over you in Waitrose of all places!!! That's terrible.... I hope someone came to your aid..

[Flivoless in reply to Sophiestree]

Yes, that wouldn't of happened in M&S

[piglette in reply to Flivoless]

Waitrose were actually very good, I asked for water and a banana and they arrived immediately. I should have asked for a lobster. I was surrounded by medically trained staff, on a Sunday afternoon! They let me leave my car for free in their car park overnight. A wheelchair appeared. I am not sure what would have happened at Lidl. I did faint at lunch time in the local greengrocer and they even let me have my shopping for free.

[JanetRosslyn in reply to piglette]

"I should have asked for a lobster." Ha ha, brilliant 🤣

[tempusfugi in reply to Sophiestree]

I thought the same, Sophiestree!

[Sharitone]

When this happened to me I had to increase the dose slightly then proceed more slowly with the reducing.

[Staffieblue]

I dont know if this is any help but when I was seeing my doctor , I am reducing I’m still on 5mg she checked my standing and sitting BP she said if it did drop significantly that is a sign of adrenal crisis , mine was fine .

[lennysmummy in reply to Staffieblue]

Yes it’s difficult. Mine today only went down from 117. On standing 116, then went i moved around up to 141. Yesterday 129 sitting, standing 115. I’ve emailed the consultant so I will see what she replies. 🙏