Don't know What's happening to me!!

[JanboC]

Doc recommended 2 x Amytryptyline in Feb., after it was discovered I had 2 x damaged discs in my lower back. Referred me to Physio, (appt. on 22nd!)I was OK for a couple of months, then started to feel dizzy, lost my appetite and taste, everything tastes sweet!, even a roast dinner. Went to see ACP who said to drop one amytryptryptyline and wean off altogether. Also, my skin started badly flaking, especially tummy, buttocks and legs. Tried everything, Zerobase, E45, Nivea Soft and Aveeno. No difference. Went for full blood screening last Wednesday, got up Thursday to an Answer phone message and 3 texts from 111 , saying to contact Doc's Immediately as there is a serious problem with my bloods!!! Talk about scaring the Hell out of me and Hubby!!Went to Docs, Friday morning, Low sodium apparently, that was a relief actually, I thought I had cancer or something. Reduced my BP meds, as it was 127/60, sat down and 120/56 stood up. No wonder I was dizzy and confused. Reduced my BP tablet, but this morning it hasn't risen hardly. 124/60 standing, and finished my Amytryptyline last night. Up at 3am this morning! I also gip and wretch soon after getting up, just clear phlegm. Goes on for at least half an hour before I can take my Lanzaprozale. Blood test Thurday, Doc's review Friday. any Advice for any long time GCA sufferers please?

sorry for the long post, my typing is so slow at the moment, this has taken me over an hout!

[SnazzyD]

Sounds like a lot to contend with! Are you on Pred? If so, what dose and how long have you been there? Low sodium and dropping blood pressure when you stand are two features of poor adrenal function. How long has the coughing been going on and has anyone listened to your chest? However, your situation sounds quite complicated.

[JanboC in reply to SnazzyD]

Hi, only a few weeks for the gipping etc, been on 10mg for about 6months, tried 9.5, 9,8.5,8,7.5 and felt awful. Went back to 10 and felt better, Doc has told me to stay on 10mf for now. Had a chest Xray in Feb, all clear, ACP and Doc listened to my chest last week, no problem. Have also got a very snotty nose (sorry) when having the coughing and gipping episode. Doc said nothing about adrenals, but I wouldn't expect that on 10 mg? Thanks SnazzD.

[SnazzyD in reply to JanboC]

Not usually, but some people have appeared to get the wobblies at 10mg. I guess it depends on how much of your Pred actually gets into your system, so whether 10mg is actually 10mg available for you to ‘spend’. The fact that you felt awful so soon after dipping under 10mg suggests you may be ‘one of those’. What dose were you on when you had these symptoms?

Could you have a virus? Did you test for Covid?

[JanboC in reply to SnazzyD]

No Covid, We test twice a week. It started around 7.5 mg.

[DorsetLady PMRGCAuk volunteer]

Agree with SnazzyD on the adrenals causing some of the problems [depending Pred dose], and the coughing etc does need more investigation.

As for GCA involvement, doesn’t sound anything related to that, but knowing what dose you are on [when you feel able to advise] might help us to help you.

[JanboC in reply to DorsetLady]

10mg at the moment, Also have Ostopenia. Been on Pred since April 2018. Thanks, DorsetLady

[DorsetLady PMRGCAuk volunteer in reply to JanboC]

Okay thanks, but would disagree with doctor ruling out adrenals completely at 10mg…particularly as you have been lower.

We do quote 7.5mg, but that’s an average - normal cortisol produced when not on Pred can vary from person to person from 10mg down to 5mg…so if you happen to to fall into the 10mg bracket…who knows.

Hope you can get the other issues sorted….

[PMRpro Ambassador]

I have to say I'm a bit surprised that your BP is having that much effect since mine is usually consistently in the region of 110/60 lying and I don't feel dizzy - shows how different people can be, Some people start to feel the adrenal effect at 10mg and occasionally even above.

How low is the sodium - what have they told you to do to get it higher? Changing the BP meds won't have an immediate effect. And a long standing persistent cough needs more investigation than a chest x-ray IMHO!

[JanboC in reply to PMRpro]

Can't find sodium. Not specified, Eosinophil 373, mean cell concentration 37.9 , Lymphocite out side range, no figures.The coughing has only been a couple of weeks when I started retching & gipping. Maybe I instigate that to cough the phlegm up? I was thinking of stopping the BP for a few days to see if there's any difference. Not been told anything else to do.

[PMRpro Ambassador in reply to JanboC]

Sodium will appear as Na probably, under urea and electrolytes perhaps

[JanboC in reply to PMRpro]

Neither of those are shown on the results!! I will try to contact the Surgery to find out. Probably take hours on the phone!

[JanboC in reply to PMRpro]

Still not got through!

[JanboC]

I have just fallen, again. on Friday I fell on the decking hanging washing out. Mick couldn't hear me cos he was in the lounge and cos he's bit deaf. Took me about 20 mins to get myself up and back in. Just fallen in the kitchen, totally lost my footing, luckily Mick managed to get me up, but it was a struggle as he has serious health problems as well. I am bloody fed up!!! (sorry)

[DorsetLady PMRGCAuk volunteer in reply to JanboC]

Not surprised you’re fed up…. and a fall is very disconcerting at the best of times.

Do you have a walking stick you can use for a bit of extra stability? Failing that, furniture surf -and just be more mindful of how/where you tread….

[JanboC in reply to DorsetLady]

Yes I do, but I don't find it much help when I am outside, perhaps I could try it indoors. I can't even get off the loo without hanging onto the sink and radiator. Thanks for replying x

[PMRpro Ambassador in reply to JanboC]

You may need something more stable like a zimmer frame or rollator, I would demand a referral to the falls clinic if you keep falling - they might achieve something.

[JanboC in reply to PMRpro]

Sorry for not replying last night. I suppose i'm scared to admit that I am getting old and useless! I have been my hubby's carer for over 10 years. I have too much pride to use one, and I think you would answer that with "remember, pride cometh before a fall", lol xx

[PMRpro Ambassador in reply to JanboC]

Don't apologise - I was probably in bed, being ahead of the UK! Don't go there - that all-consuming world of being a carer leaves its scars, now we are free of that, our health takes a dip in reaction and tries all sorts of darts to take our worth away. It's trying to stop you doing things - kick that into touch by using things that help. And an early way of taking control in this case is asking for the falls clinic participation who will identify causes and if not cures, then at least mitigations. My neighbour fell at home last summer, if she could break it, she did! She is much younger than me and has walked up mountains for fun all her life. Now she needs walking poles to do it, never did before.

[JanboC in reply to PMRpro]

I can't just abandon Mick, he has vascular dementia as well as having problems walking, stents and bypasses. He has actually sprung into action now, and says it's his turn to look after me for a change. I don't know how he managed to get me up on the floor, he just said "Trust me,I 've got you" and he had. I feel a lot better today, good night sleep, peeling tummy muck improved, BP going up, and not as wobbly!

[PMRpro Ambassador in reply to JanboC]

I didn't mean abandon him but accept that you need assistance in some way to be able to cope with both of you. Here I had no problem if my husband fell - an ambulance and a healthy young crew was at the end of the phone and here in 10 minutes at any time of the day or night, Not so easy in the UK so you have to take all the precautions you can. Including a rollator to carry the washing and grab handles etc - which the falls clinic will assess and arrange via physio and occupational therapy. You may have to pay for some things but others and the advice are free on the NHS.

[Hunter134 in reply to JanboC]

I am also a caregiver to my husband who has balance issues but can walk with a walker.When I took sick he tended to me.I don't know how but love can bring the best out in people.Maybe try to do only what you can at the moment.I get it we re the nurturing kind but sometimes we need caring to💕

[Mayadill in reply to JanboC]

Nah, rollators are sassy! Much more fun in some ways than tottering around on a stick/sticks, which mean when you want to use your hands you have to put them down - just lean on the rollator. The stick then falls over. And of course when you're lifting/carrying you can't use a stick. Just put the load on the seat and wheel away. Yes, some designs make you feel about 105 just to look at them. Mine's purple and black.

[PMRpro Ambassador in reply to Mayadill]

And if you get the right one - never short of a seat!!!!

[JanboC in reply to Mayadill]

Yeah, that sounds cool. Only problem is down 6 steps to the decking to put my washing out, but I could ask Mick to take it down and back for me when it is dry. Thanks to you and PMRpro for the suggestion. I'll look into it.

[PMRpro Ambassador in reply to JanboC]

Do you have a handrail?

[JanboC in reply to PMRpro]

Yes, both sides down the steps

[Mayadill in reply to JanboC]

It enables and improves the critical bits - still walking on your very own two legs and walking as fast as you can. Pushing is good for the arms and upper body too! I'm in a ground floor flat and obviously people with steps/stairs are in a different situation. Most I can say it's readily liftable over kerbs and such like. But it does definitely make parts of my life a doddle, things that were a total pain with sticks like taking out the rubbish, taking laundry to and from the machine, just load it onto the seat and wheel it away.

[JanboC in reply to Mayadill]

We live in a 3 bed Terrace house and are registered with the local council for a flat or Bungalow, but they are usually miles away from us. We have family who are local to our area, except our daughter who visits once a month to do the cleaning, and one Saturday a moth for a sleepover. I batch cook and box and freeze them for her to take home!

[Mayadill in reply to JanboC]

Property plays a huge part in mobility issues. My sister-in-law has a small delightful house that I literally can't get near because it's sunken, front door below street level. Long steep drive up to the back gate to the garden, which I can manage on a good day, then a huge step - had my workout getting into the garden, what are we going to do now! Also have a friend of 97 who also has a small delightful house in which she is determined to remain and indeed still goes upstairs to bed, which is amazing and wonderful - except she's had three falls and everyone else is permanently terrified.

[Mayadill]

Curious about the BP. According to the NHS your readings were gloriously normal

high blood pressure is considered to be from 140/90mmHg (or an average of 135/85mmHg at home) – or 150/90mmHg (or an average of 145/85mmHg at home) if you're over the age of 80

ideal blood pressure is usually considered to be between 90/60mmHg and 120/80mmHg, while the target for over-80s is below 150/90mmHg (or 145/85mmHg at home)

Blood pressure readings from 121/81mmHg to 139/89mmHg could mean you're at risk of developing high blood pressure if you do not take steps to keep your blood pressure under control.

nhs.uk/conditions/high-bloo...

[JanboC in reply to Mayadill]

Maybe I got it wrong ? I am confused at the moment, that could explain why he removed one tablet so I am only 8mg. Makes sense now sorry

[Mayadill in reply to JanboC]

Or maybe they were looking at a different scale? This next bit's a bit hazy and from memory but I think the goalposts have been moved.,

[Miserere in reply to Mayadill]

Could it be that the diastolic is too low - or the systolic too high - so the discrepancy between the two. PMRpro told me what this was called - isolated systolic hypertension?? Just a thought and PMRpro would probably know.

[JanboC in reply to Miserere]

Thank you, I will find out.

[Mayadill in reply to Miserere]

That sounds really likely in fact.

[JanboC in reply to Mayadill]

It is! Top was 130 this morning. Bottom was 73. heart rate 91. Thank you