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LUPUS UK

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Tiras profile image
Tiras
β€’22 Replies

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Hi y'all!

I went to my rheumatologist to day and, they were not happy with my Blood Pressure. My BP was

210/114

They gave me Clonidine to bring my BP down. They would not let me leave the doctors office to drive home until it came down. About 30 minutes later they check it again, it had dropped to 186/108. They still were not happy but what do you do? This is part of my Malignant Hypertension, which may be caused by Lupus? They really don't know what causes it?

The Clonidine will somewhat lower BP but, it also lowers the already low engery level even more. I am now so tired it hurts, and amplifies my headache 10X. If that is not bad enough, I am at my Grandchildren's (who live with Laura and I) football and cheerleading practice, where it is almost 90 degrees Fahrenheit in the shadow of the trees. (This is the temp at 6:00 PM).

To say the least, I'm not doing very well this evening! BUT,

πŸ‘£I will not let lupus control my lifeπŸ‘£

For most of you it is

πŸ‘£GOOD MORING TO Y'ALLπŸ‘£

by the time you see it.

Stay πŸ‘£BAREFOOT πŸ‘£ And have a good and BLESSED DAY!

REMEMBER

πŸ‘£LIVE LIFE TO IT'S FULLEST!πŸ‘£

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Tiras profile image
Tiras
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22 Replies
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Denise1219 profile image
Denise1219

I am praying for you. We go through so much and still have to push for our family

Tiras profile image
Tiras in reply to Denise1219

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Denise;

First of all I want to commend you and Thank You for your prayers. That will do more good than anything else can!

Yes, we do Go through a lot, then we have family that we do for. What we do for our families we do out of love, regardless of how we my be feeling, and there is nothing stronger than love.

Just part of a Bible verse you know will know the rest of it.

John 3-16

For God so Loved the World that he gave his only begotten Son.....

Need I say more?

Wishing you the best and may GOD BLESS YOU!

πŸ‘£πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£πŸ‘£

mrleroyjacksonjr profile image
mrleroyjacksonjr

God bless you and keep you!

Tiras profile image
Tiras in reply to mrleroyjacksonjr

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MrLeroy;

Thank you so much!

πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£

windless22 profile image
windless22

They were right to keep you...and not happy leave you as that was dangerously high.

Have u seen a cardiologist...they would know more...glad hear dropped but its essential you carry on taking it..and get follow up...i have faith....hugs

Tiras profile image
Tiras in reply to windless22

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Hi Windless;

Yes, I have a cardiologist. They have tried to find what cause my high BP. I take 11 medications a day just for BP not counting what I take for lupus. It will be high one day and some what normal the next. That's the part they can't figure out? They have done test after test. They find no reason for me to have high BP?

I was in the hospital last year because of BP it was 256/147 after a a week with medications through an IV for BP it only came down to the 186/108 when they let me go home.

Unless it is lupus related they have no clue.

The doctor I go to now for BP is the 3rd one. All have been baffled?

Wishing you the Best!

πŸ‘£πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£πŸ‘£

steve61 profile image
steve61

Surprised they didn't send for medics as that was high to be messing about with!

Tiras profile image
Tiras in reply to steve61

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Hi Steve;

That did happen one time. I went to the doctor and left the doctors office in an ambulance. That was when it was discovered. Now it will be high one day and some what normal the next day?

Thank You and have a BLESSED DAY!

πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£

Barnclown profile image
Barnclown

Am by your side dear BFG πŸ‘«πŸ‘­πŸ‘­πŸ‘¬πŸ‘­πŸ‘«πŸ‘«πŸ‘«πŸ‘­πŸ‘­πŸ‘­ please send more updates when you canβ€οΈπŸ€β€οΈπŸ€β€οΈπŸ€

Tiras profile image
Tiras in reply to Barnclown

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Coco;

Words can not describe your friendship, you are always there think of not only me but, everyone in this Commuinty.

Thank You for your support!

πŸ‘£πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£πŸ‘£

Barnclown profile image
Barnclown in reply to Tiras

❀️This is what our wonderful 🌟forum is all about...the friendship is for all 😊

Tiras profile image
Tiras in reply to Barnclown

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Yes you are correct.

Littleeffie' post is beautiful.

Just another wonderful friend here in this Commuinty!

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cuttysark profile image
cuttysark

Hope they get your BP sorted out Tiras.

You and your family have gone through a lot of stress recently as you try to support your Mum and Dad and that can have a knock on effect for a while.

Harder said than done, but go easy on yourself for a while and take it slower, I am sure the family will understand. X

Tiras profile image
Tiras in reply to cuttysark

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Cutty;

Thank you so much for keeping us in your thoughts and prayers. I have been busy taking care of my stuff along with Mom & Dad also. It is just my malignant hypertension, it has been this way for a few years now. It will be high one day and some what normal the next. It may or may not be lupus related, they can't find a reason?

Wishing you and yours the BEST!

πŸ‘£πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£πŸ‘£

littleeffie profile image
littleeffie

Oooh!

That was high.So sorry you're having that while trying to help family out and in THAT heat I'd be melting.

Just a thought ,prob silly but just want to help you in some way, have they checked your kidney function at the time of blood pressure zooming upwards? I only ask as I have very fluctuating kidney function,Lupus does play tricks,and although normally I suffer low BP when kidneys play up for no reason and with very little other symptoms my BP goes up high although not as high as yours.It may be worth asking them to check at the time as my results can change and the connection was only picked up by accident while on ward.Now if BP goes up they do renal checks.

Well anyway wishing you a much better ,calmer and cooler day.

Tiras profile image
Tiras in reply to littleeffie

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Littleeffie;

Yes all of that has been checked. Renal scans, kidney function, etc. as of now they have no clue as to why? Unless it is lupus related?

As for the weather forecast here today. It is supposed to be just as hot today as yesterday, and the rest of the week is pretty much the same. Dry and Hot!

I think I'll go Barefoot the rest of the week to keep my feet from getting so hot! LOL! (I had to joke about it, make the best of it)

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vaderviper profile image
vaderviper

Your BP is still too high. You need to be seen by a Cardiologist ASAP! There are MANY types of BP meds to control your hypertension, i.e. alpha blockers, alpha beta blockers, renin inhibitors, Angiotensin-converting enzyme (ACE) inhibitors, Angiotensin II receptor blockers (ARBs), calcium channel blockers, beta blockers just to name a few. (A diuretic can be added to decrease your BP even more). Your cardiologist will find a medication that works well for you with hopefully little to no side effects. I WOULD NEVER ALLOW A PATIENT TO LEAVE MY OFFICE WITH A BLOOD PRESSURE THAT HIGH WITHOUT IMMEDIATELY REFERRING HIM/HER TO A CARDIOLOGIST FOR FURTHER TREATMENT...........YOU NEED TO BE SEEN YESTERDAY!

Dr. S. (in the USA)

P.S. Not all blood pressure meds will lower your energy level......your Cardiologist will get you on the right meds. PLEASE SEE HIM/HER SOON.....IF YOU CAN NOT BE SEEN IMMEDIATELY, GO TO THE ER.

P.S.S. Were you ever diagnosed with malignant hypertension? It is rather rare (only about 1% of hypertensives ever develop malignant hypertension). Malignant hypertension is defined as rapidly increasing BP of 180/120 or higher and signs of organ damage. Usually, the damage happens to the kidneys or the eyes.

If you have symptoms of malignant hypertension, your doctor will:

Recheck your blood pressure and listen to your heart and lungs for abnormal sounds.

Examine your eyes to check for damage to the blood vessels of the retina and swelling of

the optic nerve.

Order blood and urine tests that may include:

Blood urea nitrogen (BUN) and creatinine levels, which increase if you have kidney

damage.

Blood clotting tests

Blood sugar (glucose) level

Complete blood count

Sodium and potassium levels

Urinalysis to check for blood, protein, or abnormal hormone levels related to kidney

problems.

Good Luck.

Tiras profile image
Tiras in reply to vaderviper

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Hi Vaderviper;

Yes I have been diagnosed with Malignant Hypertension. I have been battling this issue for several years. They have tried tons of medication in many combinations. Test after test after test....

As of now they (cardiologist, nephrologist, etc.) have no clue and can find no reason for my high BP.

I understand everything you have said and been through all of it.

This moring my BP was 214/118.

I am taking 11 medications a day for BP to keep it where it is now. It has gotten up to 286/185 that is as high as I remember.

I have been to several doctors. The one I go to now is a specialist at Grandveiw in Birmingham Alabama. He is totally baffled. He says I am the first patient that he has not been able to control their BP?

Unless it is lupus Related, we have no idea?

Thank you for all the information.

However I hate to use this phrase but, all you have suggested, πŸ‘£I have been there and already done itπŸ‘£

Wishing you the Best!

πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£πŸ‘£πŸ‘£

MagsaTrini profile image
MagsaTrini in reply to vaderviper

Ive had severe spikes in BP over last year.... 3 X 24 BP monitors.... Highest reading 225/149 lowest 90/43....... Headaches, insomnia ( can fall asleep but can t stay asleep) very blurred vision on and off, dizziness, feeling sick...... Somedays it perfectly fine and then out the blue it shoots up but doesn't stay up?? Currently under investigation by endocrinologist for hyperalderstone / Conns (tumour on adrenal gland). I've had very low renin twice

I have Hashimoto and lupus both diagnosed last year

Could it be related to lupus? My rheumatologist doesnt think so and leaving it to endo

Tiras profile image
Tiras in reply to MagsaTrini

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Hi Magsatrini;

Yes, I have been told my BP issues could be caused from lupus but, they can find nothing else so, that may just be an easy way out?

I go to 4 different specialist (different medical areas) and no one has a clue. I have no blockages, nothing they can find. They and I don't know what to do.

Hope you have a blessed day!

πŸ‘£πŸ‘£πŸ‘£πŸ‘£TirasπŸ‘£πŸ‘£πŸ‘£

MagsaTrini profile image
MagsaTrini in reply to Tiras

Thanks for,your reply Tiras.. I'm also under rheumatologist, dermatologist, endocrinologist and soon to be ENT.... Hoping to receive some answers soon to fluctuating BP

Also wishing you a bless day :) x

MagsaTrini profile image
MagsaTrini in reply to Tiras

Got blood results from endo investigate...... Blood results after salt loading and 4 days of steroids......

Low sodium??.

Low potassium

Low protein

Low creatinine ratio

Severe deficiency of vit D

Low lymphocytes

Very low renin .... Been very low for over year now

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