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Amanda Thorpe

Sclero vs side effects & high blood pressure

6 posts in this topic

Hello All

 

I am officially miffed I tell you! Have I said that before...well probably but this time I mean it. Anyway before I get into that I have a question, when you feel exceptionally unwell how do you know whether it's the scleroderma or side effects from the medication, in my case methotrexate.

 

You see I was getting on swimmingly with the methotrexate until last week. After my dose I began to feel week, nauseous, headaches and complete lack of energy, even more so that usual. This went on for 6 days and previously the methotrexate has only made me feel unwell for 2 maybe 3 days. Of course I then started to panic about how long this lovely new experience was going to linger because I have plans for this coming Saturday...lots of people with scleroderma are going to converge on me! Hey maybe between the 12 of us (if they can all make it)they'll be enough "well" body parts to make at least one healthy person! :lol: Anyways, what do you reckon?

 

Now back to being miffed. As with some people with scleroderma I like to hold it responsible for all my ills, past, present and future. Today I had to speak to the specialist nurse because my blood pressure is still going up and down despite medication. I now have to have a 24 hour monitoring period after which they can decide my average blood pressure and whether I need the medication increased/changed. Fair enough I thought until the nurse said, having been told by the doctor,...that the blood pressure was not because of the scleroderma. Excuse me? My BP had always been excellent and consistent until the scleroderma then it went bonkers so how does that figure? Of course I am pleased to know that this information means I am not heading for a renal crisis which was lurking at the back of my mind.

 

So now it looks like I am going to be stuck with A N Other Illness on top of the scleroderma and migraines. Great, who else wants to move in? Some people collect stamps, me, well A N Others! :lol:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Oh Amanda, how I sympathise with you! The first summer after I was diagnosed, my legs and ankles ballooned up so big I thought the skin was in danger of splitting. I was send on a merry round of doctors, each one going "Um, ah~" and not one of them willing to own the problem and work on a solution. The sclero guy said not sclero, see the general practitioner. The general practitioner said it's the medication, see the PH guy who prescribed it. That guy sent me back to the general practitioner saying not my medication! and the general practitioner sent me back to the sclero guy saying nothing to do with me mate, and the sclero guy took me off the medication prescribed by the, oh dear, I've lost my place! Anyway, as it turned out, it was the medication after all! :lol:

 

I haven't been on methotrexate and my BP is OK, BUT! (wait for it!)I have a friend with sclero who has been on a real roller coaster of a ride with her BP and her sclero guy has decided it was due to the medication he prescribed for her Raynaud's. So in a purely linguistic sense, it was due to the sclero. If she didn't have that (and Raynaud's) she wouldn't have been on the medication! :P

 

Go ahead, toss the teddy out of the pram! It's good for what ails you.

 

Give your convergence of sclero friends our fond greetings from this side of the pond.

 

Warm hugs (not due to sclero or medication, I'm just huggy),


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Amanda

So sorry you were feeling so bad. Hope you're feeling better now. I'm lucky (!!??) because I'm on very little medication because I don't yet have a treatment plan so whenever I'm feeling exceptionally unwell it must be the scleroderma!!! ;)

Take care x

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Hi Amanda

 

I never had issues with my blood pressure until diagnosed with systemic sclerosis (SSc). After an echocardiogram I was told I had some stiffening of the left ventricle and some mitral valve regurgitation but they said it's nothing to worry about but I find my blood pressure (BP) still keeps going up. It's now usually around 140 over 94, not exceptionally high but enough to make me wonder what is going on since it was always very low.

 

But after having my BP done this last few weeks while in hospital they questioned me about my BP being on the high side but general practitioner and rheumatologist don't seem bothered. So what is high? Is it the top number or the bottom number?

 

Anyway I do hope that things are settling for you now.

 

Take Care

 

Buttons

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Hello Buttons

 

The blood pressure thing seems a bit tricky to me. According to the specialist nurse I last spoke to (who was passing on what the rheumatologist said) for sclero the concern with BP is if it keeps rising rather than going up and down, as mine goes up and down the rheumatologist thinks it's not sclero related...I have other ideas.

 

According to the Blood Pressure Association normal BP is up to 140/90. If your BP is going up and down it may be worth asking your general practitioner for a 24 hour monitoring so they can find the average reading and then know whether medication is required or not.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Amanda, my doctor told me he watches the bottom number. If it is over 92 he keeps and eye on it. Over 95 he would put me on medications. That is my regular family physician. Check it and if you feel dizzy or faint or have buzzing in your ears then check your blood pressure. If the bottom number stays above 95 then you should consult with your physicans nurse or make an appointment for followup.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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