bad day ,need cheering up!

Bones, joints and muscles
1

Hi All,

Had an appointment at the hospital on friday, with regard to the clots I had earlier in the year.

Anyway I had to wear a heart monitor for 24 hrs & the lady doc told me they picked up a couple of blips, need to talk to her again as I cant remember what it was,apart from a leaky valve & some fluid around the heart, was told it was nothing to worry about , as if I couldnt worry!

Anyway she told me to up my bisoprolol from 1.25mg to 2.5 mg , which I did on the sat morn, ,my, did I feel queer after that, so drowsy, couldnt keep my eyes open, couldnt function , just sat in the chair all day till 5 p.m. when I started to feel more myself.

side effects say can cause extreme drowsiness.

So today I didnt take the extra tablet, but still feel out of it a bit.

Will ring the hospital tomorrow to see if I can talk to the doc & tell her what has happened, I am too scared to take them again apart from the 1.25mg which I havent had any problems with to date.

Sorry to drop all this on you lovely people, but to just know I can is wonderful, thank you so much for your time.

I am dropping down quite well on the steroids , just didnt expect this .

Cheers Amycakes.

2

:peace: :tickle: :nahnah: :wow: :cheerup: :winkeye: :hug: :cupcake:

Just trying to cheer you up Amycakes! I'm not surprised you feel low and hope you can speak to the Doctor tomorrow and get some advice. I'm not up to speed with why you take bisoprolol so you'll have to a) excuse me and b) remind me! I think you're wise not taking the double dose today as it seemed to have such an effect on you. Why do these things always happen at weekends? Anyway, I hope you have had a bit of a better day today and let us know how you get on with the Doctor tomorrow.

Take care and big hugs :hug:

Lots of love and sympathy from Lizzie Ellen :rose: xxx

3

Hi Amycakes

Oh, isn't it frustrating just when you're doing so well and another 'blip' comes along.

I haven't taken bisoprolol but have taken a drug called Atenolol which is of the same family - both are beta blockers. I was given this for high blood pressure and to try and control my irregular heartbeat. It also slowed down my pulse to such an extent that it reduced my energy levels and caused weight gain because of its affect on the metabolism. I only took the lowest dose and I guess I could have had the same effect as you if they had increased it. I took it for 3 years until I was switched to another (non-beta blocker) blood pressure drug, Ramipril (an Ace Inhibitor), and this had adverse effects for me as well! Now that I have come down to almost zero on the steroids, I have worked hard at losing the steroid weight gain plus more and this seems to have had the effect of reducing my blood pressure, plus of course my walking so, therefore, am not on any BP drugs at present.

Like you, I also have a leaky valve - the mitral valve.

Also like you, I have been told it's nothing to worry about! But I had a further check on it all a few years ago at which time the leak had not worsened and I was told that the irregular heartbeat was a benign one. The only symptoms I seem to have are intermittent palpitations and an abnormal ECG.

I did once wear a 24 hours BP monitor which proved useless. It flumoxed the cardiologist for a while but it's now known that they don't give an accurate reading on someone with an irregular heartbeat - I rang the manufacturers of my home BP machine when I suspected this and they confirmed it to be the case which I passed on to my GP's surgery! :roll:

I'm so glad you feel better today back on the lower dose and do agree it will be a good idea to talk to the GP tomorrow and find out exactly what the results of the heart monitor are and why you have been advised to increase the bisoprolol. Hopefully, if the results are such that you do need treatment, they will be able to switch you to a different drug that doesn't have such a bad effect on you.

Hope this hasn't bored you Amycakes, but just thought there might be something that I've mentioned that would mean something to you and therefore help to reassure you.

Good luck tomorrow and do let us know how you get on.

MrsO

4

Hi amycakes - what a rotten way to spend a weekend! Did you know that one of the side effects of bisoprolol can be insomnia! Talk about a world of extremes :roll: Might have been preferable!

Are you sure you are on 2.5mg? That is still a pretty low dose according to the notes so it obviously doesn't really agree with you. I wonder if the doctor considered the concept that having GCA is sometimes to all intents and purposes a peripheral vascular disease? And bisoprolol is to be used with caution in that case - it would reduce the blood flow to the periphery (the bits furthest away from the heart), possibly far too much. And that might include the brain which would make you feel quite woozy. Did you feel cold? Especially hands and feet? When they start you on it they are supposed to monitor you for 4 hours after taking the first dose - I suppose she didn't think it was necessary since you've been taking it before but I think any further adjustments might be better on a Monday morning!

What else are you on? Anything that might clash with a higher dose than you've been used to - A+B might be OK, A+2B might not!

Hope you feel a bit better now - good luck with sorting it out :wink:

Eileen

5

Hi All, Thanks for your input ,so much appreciated.

Eileen.

I was told to take 1.25mg of Bisoprolol after I had experienced rapid pulse & breathlessness when I was diagnosed with the clots on my lung that time, I still think that P.M.R or Steroids may have caused that, anyway , to answer your question ,yes I am on 1.25 & was told to take 2 of these which brings me up to 2.5mg.

The lady doc I saw, knows I have P.M.R ,but wondering now if she knew about the G.C.A.

I did feel cold now you mention it, just generally ,not especially feet & hands though.

I am also on Warfarin 2mg, thyroxine 100mg.& of course preds.

I also take calcium& vit D, & omega 3 fish oil capsule. thats it.

Mrs O,

My husband takes Ramipril too.

Your experience of the leaky valve etc, has made me feel better , so thank you, I was so worried, but you have eased that a bit .

Thank you too to ?? cant remember her name, as when you try & answer the questions, you dont always see the complete picture, shall have to submit this & check posts again ,sorry .

I just wanted to be feeling better as my daughter is home in 2 weeks from New Zealand, you may remember I told you previously when I first joined the forum, so I am so excited , just praying all will be well when she is here.

Thanks again you great people for your advice & concerns.XCheers Amycakes.

6

Lizzie Ellen,I got you now, please excuse me, you did cheer me up with your virtual hugs, thank you again,

Amycakes.

7

Hi Amycakes, glad Mrs. O was able to reassure you regarding the heart problem. I think you are wise to check it out with the doctor regarding the tabs if they had such an immediate effect on you.

I had a DVT a couple of years ago - it was in the thigh and could have been caused by the steroids, but I was on Warfarin for only six months.

So cheering now that your daughter's return is so close, you must be so excited. My daughter is in Wanganui, North Island; they've been out there 6 years now, but I think it will be a bit longer before they are able to come home for a holiday.

Nefret/Catie

8

Hi Amycakes.

I'm sorry to hear you've been having such a worrying time. Several of us on here seem to have stuff other than PMR or GCA don't we?

I'm glad some of us have been able to put your mind to rest a bit.

I hope you have a lovely time with your daughter and that you are feeling better by then.

Lots of hugs

Beev :hug: :dog: :bunny:

9

Yes - this not being able to see what you are replying to is a pain - but you can solve it by opening another window and opening up the forum and thread in that. You can read the whole thread on the other one whilst writing your answer in the first one! It sounds more complicated than it is and you do need to remember which you are in but it does work.

Eileen

10

Amycakes I'm sure that you r daughter's visit is just what you need. A lift of the spirits definitely helps the pyysical problems.

Sorry, cannot offer anything on the heart drug reactions. I do have raised BP off and on but have so far resisted offers of drugs. Had a 24 hour BP monitor but must have had steroid brain when I went back as I didn't ask any questions. Was told it was normal at night but raised during the day.

Hope you get some sensible advice when you see your doc.

11

Hi Amycakes,

I can't offer any insight to the blood pressure pills as have never needed any....yet :wink:

I hope you are feeling a bit better and looking forward to your daughter's visit. It seems ages ago that you first mentioned that she was coming over to you....do steroids make time pass more quickly ???

I was dreadful yesterday...no energy what-so-ever and aches & pains all over, but thankfully much better today 8) .

I really do despair of some doctors though :roll: ...if some-one told them THEY had a leaky heart valve, but it was nothing to worry about, they would be leaving smoke tracks in their haste to a cardiologist :wink: .

Hopefully, yours is not too bad and will just require monitoring in the future smile

We are all thinking of you and know how depressing these \"blips\" can be , so lots of virtual hugs and hope you improve soon.

Love.

Pauline.

12

Thank you so much for all your messages, they have really helped me to see things more positively.

I have never had raised blood pressure, every time it is taken they say very good!

So this bisoprolol is a beta blocker, not sure exactly what it does, apart from protect the heart when I had that awful; rapid pulse etc.

Anyway am going to ring the hospital now , hopefully her secretary will be there.

Will let you know the outcome.

Sympathise with your bad day yesterday , do hope today will be better for you, again lost the name .Will have to try what you suggest Eileen, when my brain can absorb it!!

Cheers everyone & may you all have a really good day today.

Cheers Amycakes.

13

Hi Amycakes,

I'm so sorry you had a bad day yesterday ( I've been away for a couple of days) I'm afraid I have no experience of heart or blood pressure problems, but do sympathize. It's miserable isn't it when you have more than one thing going on, PMR alone is enough!! Life can seem a bit of a battle some days can't it? I hope you soon feel very much better, and fingers crossed you are really well when your daughter visits in a couple of weeks. Hope you have a lovely time with her.

Best wishes,

Molly.

14

Just to keep you up to date.

Rang the hospital yesterday, spoke to Doc's secretary, she said she would pass the message on & either she or the doc would ring me back.

I am still waiting!!

Fat face not as fat today I dont think, could dropping to 12 1/2 be the reason I wonder , would it occur this quickly on a drop?

Will phone my G.P. today if I dont get an answer from the hospital, I hate waitng ,guess they are busy, but she doesnt want to see me for 4 months, so I really need some answers soon.

Cheers Amycakes.

15

Hi Amycakes - hope you're not holding your breath waiting for that phone call! :wink: Get the GP on board - s/he'll be easier to access in case of any further problems anyway!

Funnily enough I developed the fat face for the first time this summer after a very short but high taper of pred - it was there within a couple of days so it can't be just fat deposition, that absolutely couldn't happen that quickly. However, I also realised last week that it had almost disappeared again - within a week of dropping to 10mg/day. So yes - it looks as if it CAN be quite quick.

Eileen

16

I agree with Eileen. Get your GP on board, they're much easier to contact, can help you with changes in medication when you need it, chat to when you're worried and not have to store it all up for 4 months. I find that my Rheumy is useful, my GP handy! I had to educate my GP on the wiles of PMR (almost all learnt from this Forum!) and she now asks me questions :lol: She knows I'm not a hypochondriac, that I know how I feel and what I'm talking about, so if I need her advice or just reassurance, she's very available. Its good to build up a relationship with someone who is easy to contact. I found the fat face great for smoothing out wrinkles but I didn't like how it changed my looks (not vain, I was just used to how I looked!!) But like you, mine seemed to go suddenly - people kept asking if I'd lost weight (if only!).

Take care,

Love from Lizzie xx

17

Well I finally had my phone call, & me reverting back to my normal dosage was the right thing to do,which I knew anyway, so she is writing a letter to my GP with myself receiving a copy, so shall wait till I get that & make appointment to see my G.P. then.

She is also putting in the name I couldnt quite grasp ,it was so long & complicated , so at least I will be able to Google it when I know what it is!

Catie

I remember you telling me about your daughter in the North Island, my son lives there too in Auckland, been there almost 4 years now.Torbay. Miss them all so much , but seeing my daughter from Prebbleton near Christchurch is the icing on the cake for me this year.

Ive got loads of yellow ribbons ,balloons etc , to tie on my tree in the front garden , 7 years is too long, just need to win the lottery & then can have her home more often.Fingers crossed, as my husband says , \"someones got to win it\" dont hold your breath though!!

Cheers Amycakes feeling much better today , must be the 12 1/2 drop!!

18

Hi All,

Me again!

Have dropped to 12 1/2 7 days today, still not feeling that good though, just wondering if I am expecting too much in just 7 days?

Still very tired especially mornings, seem to improve later in the day, achy legs, but what seems worse to me is the tearfulness that comes over me, I hate that feeling, just want to cry & feel sorry for myself, any little thing on the t.v. starts me off if its sad.What a wooss I am lately.

I should be over the moon with my daughter coming , so hope it will improve soon.

The weather is going to improve , mini heatwave expected here in the U.K, so I should be feeling good.

Hope you are all having a better day.take care of yourselves,

Cheers Amycakes.

19

Hello Amycakes

Providing the pains and stiffness isn't too bad then it could just be that your body needs a few more days to adapt to the reduced dose. Unfortunately, it seems the emotional issue is part and parcel of both PMR and the steroids but it does get better as you get lower on the dose. Do hope you start to feel more on top of things soon especially with your daughter arriving - if nothing else, that is sure to lift your spirits. :D

MrsO

20

Thank you Mrs O,

I did wonder if it was withdrawal symptoms, I shall try & stick it out for longer.

The depression did get to me today, normally I talk myself out of it.

I seem to have lost my appetite too, could be the drop maybe?

I used to be ready for my meals, but these last few days I dont seem interested in eating much at all.

At least I may lose some weight !! hoping!

Thank you for your input ,you always make me feel better , all you lovely people, you suffer too, I hope you get a lift out of others helping you at difficult times.

Hope you are having a good day.

Cheers Amycakes.