A bit fed up! Update!!

Saw my Rheumatologist today - hoping for a further reduction in my Prednisolone or even a plan to come off it altogether as I have managed to get right down to 2.5mg.

No such luck!

Blood pressure sky high at 180/90, ESR 33 - and he is not a happy bunny at all!!!

Had loads more blood tests, plus urine test,

been warned to expect a big increase in the prednisolone depending on the results.

Back on the roller-coaster once more!

Ah well !

Just had my blood pressure checked today (11/04 13) and it has come down to 120/80. Big relief - now just waiting for blood results!

Thank you everyone

Karen x

12 Replies

  • if u have had a cold or something that can make esr high and if ur weorried or stressed that would make blood pressure high , that is what happend to me in dec but then it came down again on its own so fingers crossed x

  • Hello kazzylizzy. Its trish29 to say what a shame you may have to go back up on your prednisalone after getting down so far (let's hope you won't have to go to high) and I hope it won't take long for you to find out. Let,'s hope the blood pressure sorts itself out quickly, I've had high blood pressure for about a year and was told that the steroids and the pain can cause it. Let's hope that maybe with some extra rest it will come down ,I will be watching the blog with interest to see if you get better results. I've got my new rheumy tomorrow and wait to see what's going to happen as I just can't get down on these steroids ! Cheer up as we are all on this rollercoaster and care what other's are going through. I think this blog is amazing and so helpful. Hope you feel better soon. Trish29

  • Poor you... I hope your results will bring better news.

    I have to say I am a little concerned at the variations in rheumy responses to the numbers... I can only guess there are other factors involved that provoke this response. I wish you well.

  • There are so many questions I want to know. Have you PMR or GCA? What is your normal blood pressure? What age are you? How long have you been on steroids?

    I do hope things improve soon. Better to reduce Prednisolone gently. I took six months to go from 3mgs. to nothing, even taking Methotrexate at the same time, Now thankfully, off Prednisolone and reduced Methotrexate, so worth being patient. I was diagnosed with GCA two and a half years ago.


  • Hello Kazzylizzy

    I hope the increase in your ESR just points to a simple virus or infection lurking and not a flare in PMR, especially as you say you had been expecting to receive advice to reduce your steroids - I'm assuming that means you aren't suffering any return or increase in PMR symptoms?

    Raised blood pressure is one of the many possible side effects of Prednisolone and something that should be monitored throughout treatment.

    I hope you don't have too long to wait for your blood test results - waiting is the worst time - and that the news is good.

  • Sorry to hear about this setback which may not be as bad as it sounds. A month or so back my blood test showed higher than previously CRP but I could relate that to a sinus infection and as soon as that was sorted out, the CRP went right back down. Anyway, don't worry too much or your BP will go up further! Meditation might help. No, really, it could.

  • Hi Kazzy,

    You don't mention any pain? It is advised that PMR should be diagnosed and treated by the symptoms of pain, stiffness, etc, not blood tests.

    As for your raised BP - my pressure is always sky high when I see any doctor or nurse waving a BP monitor at me. Prednisolone raises BP. Mine was very high on 30mg of pred but reduced every time I dropped the doses. I monitor my BP myself at home.

    Have you had raised BP in the past? 2.5mg of pred will have little or no effect on it.

    You've done so well - I really hope your doctor does not suggest that you up the dose of steroids.


  • Thank you everyone for your care and concern,

    I will keep you all updated , I promise!

    Feeling quite rough, with pain in neck, shoulders, both arms and hands.

    I feel permanently like I am going to get the 'flu but nothing ever happens,

    and I have started with night sweats ( I am not in the "change" as that has been ruled out),

    and my blood pressure is normally around 140/80.

    Had PMR for over 18 months now, and hoped I was getting there!

    I wasn't stressed at the Rheumatologists ,and as an ex-nurse I should be ok at the hospital!

    Going to my GP on Thursday for blood pressure checking again.

    I feel like I have no energy at all anymore, so I don't know what's happening!

    Just have to carry on!!!

    Thanks once again to all of you.

    Karen xxxxxxx

    PS I'm 51, Thomasina!

  • Hi kazzylizzy ! I hope you are feeling better this evening and that your blood pressure has come down . it's so hard to cope with all of this . At least you got to see your rheumatologist and they seem to be doing tests etc on you and let's hope you get your results soon. I was due to see my rheumy tomorrow ,been waiting since January and the hospital rang this afternoon and my appointments cancelled .

    Back to square 1 ,I can't get in with my main gp until the 25th April so I have to carry on the way I am. Looking forward to reading you are feeling better soon trish29

  • Thanks Trish,

    I have got a pretty good Rheumatologist who likes to throw every test under the sun at me!

    Hopefully you will get the help you need soon - don't give up, ring your rheumatologist's secretary up (just ask at the hospital switchboard to put you through) and see if she can get things moving for you. Or ring hospital appointments and ask to be notified if anyone cancels, if you can get at short notice.

    Take care, get plenty of rest ,and let me know how things go.

    Karen ,

  • Hi Karen thank you for your advice ! I used to do that with my old rheumy's secretary at a different hospital. I will wait to speak to my gp and see if I can get some new blood tests done. Hope you are OK today trish29

  • Not too bad today Trish, thanks!

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