View Full Version : High Blood Pressure

02-02-2013, 07:41 AM
So here we go again. I am upset with my Dr or nurse not sure yet. I put a call in to the Dr (rheum) about my bp. I had posted about having jitters/shakes and feeling unwell possible high bp. In called Tuesday am. I was told by the nurse to call my gp he would be the one to deal with high bp. What? I told her about them possibly adding a bp med and I think I need it. I'm not seeking narcotics. She said she Would put a note in to the dr. Finally the nurse called back and said to continue monitoring and call first thing Friday morning and that yes the dr did mention a bp med. Fine I continue monitoring I call in yesterday morning with my readings. Ranging from 158/109 to 122/88 . Yesterday it remained very elevated distolic mostly in the 100s. My head hurts I'm very tired almost lethargic and have been having chest pains with inhaling breaths and feels worse while laying flat. I have been dizzy as well and some palpitations. I told them all of this. I did nothing but lay on the couch yesterday as I was afraid I was gonna have a stroke.

It was getting late in the day and no call so I call my gp they see all the notes in my chart and my nurse at my gps office calls over to the rheum dr. She calls back and says she talked to the nurse and they will be calling you. I told her I was afraid I didn't feel good. She said continue resting and they will call. She also said my gp would have referred me right back to rheum dr for bp meds. What I thought. The nurse at my gp office calls again at 5pm and asks if they have called yet no they haven't. She said she will be calling me right back. Calls over again calls me back and says the dr is sending me info via mychart and to check it. She also said that the rheum dr was waiting to here from my nephrologist. I kept checking my chart and at 700pm last night I quit trying nothing.

If I get up and move around (live my life) it goes sky high. I was have tempted to go to the ER for some bp meds. I shouldn't have to walk around like this. I really feel like they dropped the ball. I'm pretty sure it's due to the cellcept as its a listed side effect. My husband told me to stop taking it. I'm unsure. It seems about an hour after my daily dose of aspirin it goes down a bit but doesn't stay down unless I'm staying down. I have to work tomorrow I'm scared to go. Is that stupid of me. I have aps as well I feel like a walking time bomb at the moment.

Being newly dx with sle I have been trying to learn as much as possible and was very surprised to read about heart disease in lupus patients. With having nephritis as well it puts me at even a higher risk. My next appt with the rheum dr isn't until the 13th of this month. Being angry isn't helping my bp I'm sure. I'm just so upset feeling neglected from my dr. I have recently switched to her she is the one who finally gave me a dx and has been really on top of things up until this issue. I understand they are busy and have many patients with many much sicker than I but I am still her patient and high bp is nothing to mess around with. I have been off and on bp meds my whole life. Like I said before I'm not seeking narcotics just give me something so I don't have a heart attack or stroke out. Not sure if this really warrants a trip to the ER.

02-02-2013, 12:52 PM
Dont stop taking Celcept! Dont stop taking medication without your doctors consent, it could do a lot of damage that you may not know about. I have high blood pressure and recently went through a scare when I changed blood pressure medication, my blood pressure was like 180/110 it was scary and I was to the point of going to the ER if my doctor didn't change my meds so I called and my Rhuemy sent me another prescription which helped but not completely and after some more alterations of meds I was able to manage it again. I do know that when I was waiting for the meds to work that a very low sodium diet helped make it more bearable.

02-02-2013, 01:05 PM
My advice to you is if you are having heart palpitations,feel lethargic,dizziness,chest pains and BP that does not stay down is to go to the ER.This is what would make me most comfortable.You are likely to continue to worry yourself sick(er) by staying at home.If it is a side effect of the medication then your Rheumy needs to review it as it might rule it out as an option.

I too would be angry over not getting a return call.If this has been a good dr then dont rule her out yet.Her staff could have got busy and she herself may not have ANY idea what you are going thru or the situation you are in.If she has hospital privileges at that ER request they call her if you hear"Contact your rheumy".Let the ER Dr and staff know you have been TRYING.You called the GP,they told you to call the rheumy,you did but they never called back.

Try to be calm.Tell them if it were just the BP that were up then you would make an appt monday and go in to discuss this.But all the other symptoms do have you worried.You should not be having to Lie on the couch afraid you are about to stroke.Thats unreasonable on their part and I am honestly surprised that the GP nurse just told you to lie back down and rest.If you are/were having a cardiac incident immediate treatment is vital.I am not trying to add to your worry just stating common sense.

So to me if you still feel this way then go to the ER.They can run tests and I would have them contact my rheumy.Like I said chances are she hasnt heard anything about this at all.But it sounds like you are unwell,in a high anxiety state over unanswered questions and this would be one way to solve them.If you dont feel like you can work be sure to ask the ER dr to write a note keeping you from it until you can follow up with a rheumy visit.Call first thing on monday and get in there.If they cant see you then go to the GP.They can handle BP issues..they may not want to because of the SLE and cellcept but they can.

Just take a few deep breaths,try and calm down and decide if you want to wait until Monday or if you really feel like you need to be seen if for nothing else than peace of mind.You shouldnt have to spend the weekend on the couch because you are concerned for your heart.

Be well and keep us updated.

02-02-2013, 02:56 PM
I have not stopped the cellcept I told him exactly that you can't just stop meds. I said its not Tylenol. I have just been taking it easy today. It's still high still bouncing around but probably not high enough to warrant a trip to the ER. I have been this way all week so I guess a another day won't hurt. Of course I will continue to monitor at home. I do follow a pretty low salt diet. I don't eat chips or to many processed foods. Something I have done all my life as indulging in chips/ can soup will leave me the next day with puffy eyes and tight rings.

02-02-2013, 02:57 PM
i agree about not stopping meds and going to the ER if it doesn't get better. I would also like to suggest staying with the GP for normal things such as BP and such (unless you have a cardiologist which you may end up with) because they are the ones that usually handle those kinds of meds. Since that doesn't really fall under the specialty of the rhuemy they don't always respond as they should or see the importance of things like you are dealing with.

If you have any problems over the weekend get to the ER right away but if you make it to Monday morning I suggest a visit to your GP and have him handle your BP meds.

02-03-2013, 01:09 PM
Thanks so much for the response. I'm still here lol. Managed work this morning. Still my bp is high and still continue with headache and dizziness and shakes here and there. 148/104 when I got home. I plan on working in the am and then calling into my rheum dr as soon as they open as according to my gp they were going to call Friday pm. As far as going to my gp for my bp the nurse told me he would refer me to my rheum dr for my bp she wasn't even familiar with cellcept as I told her I was sure that is why my bp is up. Anywho my heart is still pumping away :) have a good day.

02-03-2013, 04:47 PM
Thank goodness for Walgreens automated phone service. I did get a bp med called in just no email to tell me. I'm sure this will do the trick and I will be feeling better very soon. Thank goodness and thanks for the support.

02-03-2013, 06:28 PM
Hope you feel better soon.

I would still talk to the rheumy at next appt if you did not have issue before.It may be a side effect of the medication that they dont want you to have to deal with.But again dont stop without an OK from the prescribing Dr.

Again hope this helps and you feel better soon~

02-11-2013, 01:57 PM
Frustrated! My blood pressure is bouncing all over the place. Still waiting for my appt this Wednesday. Still having dizzy spells I'm scared to drive. I've been on cellcept for 2 months now and I feel no difference at all. I'm on 1000mg and its wacking out my bp. Still averaging 120/95 yesterday after work it was 140/105. Is 1000mg of cellcept gonna do anything? I'm afraid if she increases as she planned my bp will sky rocket. I'm on lisinapril. I'm feeling like why am I doing this its not working. Still heavy joint pain my hands are the worst. I feel worse then I did when I started it really. I have zero I mean zero energy. You ever feel like going back to when you didn't know and just went on with your life.