I dont like to be a burden - British Heart Fou...

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I dont like to be a burden

forevermu profile image
8 Replies

Hi I am a 53 yr old diagnosed last February with Limited Scleroderma and Raynaulds I also have hypertension. I regularly take home tests today the reading is 152/102 . its been as high as 164/102. I'm on Losartan 1 a day , changed from Ramipril I was also prescribed Nifedipress but this gave me bad headaches. I dont like to bother th doctors so I just plod on knowing this is possibly to do with my disease. My monitor sometimes finds a rhythmic concern .

Stay safe

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forevermu
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8 Replies
080311 profile image
080311

Hi, you will not be bothering your doctor, you have concerns and theses need addressing, your blood pressure does look a bit high and I am sure the surgery would want to know, give them a ring and give them the read out from your blood pressure check.

Stay safe Pauline

forevermu profile image
forevermu

Thank you Jo I was going back b4 covid but it doesnt help having to see different doctors as this I feel does come with Scleroderma. I have also been told I have very high liver levels , which was being looked into .

ben_morris profile image
ben_morris

Hi Forevermu, I have been diagnosed with hypertension in the past and I was on losartan for around 5 years. I had a HA on Saturday and now my bp tablets have been changed to Ramipril. What are your experiences of both the medications?

forevermu profile image
forevermu in reply to ben_morris

Hi

When on Ramipril my bp was ok I had moments when it was high . My rheumatologist at the hospital who deals with my Schleroderma changed to Lorsatan because it had risen . Since my liver diagnosis my BP seems to have shot up . A doctor , a locum, saw me on my last visit where I had to attend every four weeks for checks also questioned my raynaulds which has got worse then read that I could be prescribed Nifedipress. I took three tablets and this gave me horrible headaches so I stopped . Since covid took over our lives I've never been back to docs.

ben_morris profile image
ben_morris in reply to forevermu

This is my first experience of Ramipril. I have been on losartan for a long time and it did seem to regulate my bp but I did find that I did have a lot of dizzy spells on them. I also got prescribed Nifedipress along with the losartan when I showed raynaulds symptoms but this was only short term. It’s nice to talk to someone regarding it

forevermu profile image
forevermu in reply to ben_morris

I had to stop Nifedipress as this gave me horrendous headaches and yes dizziness too now you have mentioned it !

forevermu profile image
forevermu

Morning Jo

Schleroderma is the autoimmune disease that I have which also relates with raynaulds. It's very scary after being so healthy they cant cure it just needs to be managed . The liver results according to the gastro consultant have been high since 2014 but I expect at a level where they were border line but now they I believe were 174 so investigation level .

Oh happy days 🙂

Milkfairy profile image
MilkfairyHeart Star in reply to forevermu

Hi forevermu

I have Raynauds Phenomenon and migraine too. These are thought to be related to my heart condition which is caused by the blood vessels in my heart going into spasm.

It is interesting how autoimmune disorders effect the lining of your blood vessels the endothelium behave.

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