Another funny turn

[Poppylop]

Hi all, I had another funny turn last night, pretty much the same as Friday night, really burning headache in my forehead, my face went bright red and burning, I also had burning and tingling in both arms, I felt like I had loads of pressure in my face and I felt really sick and dizzy, also palpitations. This happened twice last night, I feel so much worse on the steroids that I did before them, I'm getting a lot more headaches, indigestion etc. I would rather have the muscle pain than this. I just don't think I'm coping on them, I wish I wasn't on such a high dose 40mg, I'm seeing the Dr again today but I don't know what he can do about it because there's no other treatment. I'm also now getting a cold to add to it, feeling really fed up.

[PMRpro Ambassador]

If your GP suspects GCA you need to be referred to a rheumatologist as an EMERGENCY - to be seen within 24-48 hours (and even that is too long really). GCA is a medical emergency the same as a heart attack or stroke so must be seen by a specialist quickly.

Did you seek medical help during the "funny turn"?

[Poppylop in reply to PMRpro]

Hi, not last i didn't but I did on friday, I called 111, they Sent an ambulance, did loads of checks but said everything was normal, then the out of hours Dr rang the next day and told me to go to the out of hours clinic to get checked again, he did more checks and again said everything was normal and said I was probably having a bad reaction to the steroids

[PMRpro Ambassador in reply to Poppylop]

Be firm with your GP, don't be fobbed off.

[SnazzyD]

Perhaps a 24 hour ECG?

[Blearyeyed]

There is the possibility that the high dose of steroids is causing these reactions , as it mirrors the " fight or flight" physical responses that occur in the body , and can cause palpitations , pressure headpain and hot flashes .

The indigestion might be alleviated by eating probiotic live yoghurt with a little honey with your medication , a little serving before lighter , smaller meals and reducing sugar and acidic foods in your diet until your stomach settles down.

You may be having severe side effects , or , as you said if you are coming down with an infection or cold , that will be adding to your raised temperature , symptoms and the burden on your body in general.

I assume they would not have put you on such a high initial dose unless they were hedging their bets and considering that you did not have PMR alone but GCA or GCA/ PMR.

If you are suffering so much on the high doses and feel worse than before you really do either need for the Rheumatology Department to see you as an Emergency to make a speedier decision on whether it is GCA and decide if you need to continue on high dose steroids , or that it isn't and is PMR allowing you to taper to a more reasonable dose for your needs quite quickly.

I hope you feel better soon.

[Hidden]

Hi Poppy

Any update from the GP?

MrsN

[Poppylop in reply to Hidden]

Hi Mrsnails, he said 40mg might be a bit much for me all in one go because of all my side effects so he's suggesting I split it, 20mg at night 20 in the morning. He said if I'm still suffering in a few days he will think about lowering the dose slightly but is reluctant to do that until I've seen the rheumatologist, I'm feeling pretty rubbish on them, much worse than before I started them. Before I started them I was only worried about putting on weight but that's the last of my worries at the moment, I've actually lost weight because I feel too sick to eat, and the little I am eating is giving me heartburn, I told him that those funny turns I've been having made me feel like I was going to have a stroke, but he said no I wasn't, it's just the tablets, both my brothers have had strokes, that's why I was so worried, I can't wait to feel normal again.

[Hidden in reply to Poppylop]

Oh Bless you Poppy, do you have a date for your appointment with the Consultant?

Has your GP given you anything for your stomach ie Lansoprasole? If not take live yogurt after each dose of Pred to protect help your stomach.

Do they think you have GCA with being on a higher dose?

I didn’t get the headache but l used to get the burning face & tops of my arms, when l was on a high dose of Pred. I still get pink burning cheeks from time to time.

Don’t forget, there’s always someone here if you need to talk.

Kind Regards

MrsN 🌷🌷🌷

[Poppylop in reply to Hidden]

Hi mrsN, my rheumatologist appointment is on 19th september so just over a week to wait, they put me on a high dose because I was having a few headaches and a bit of scalp tenderness, they were the only GCA related symptoms though, I have no sight problems or jaw pain, no pain when the Dr examined my head, I get a lot more headaches now, I really hope he lowers the dose when I see him, I'm taking omaprazole for my stomach, I've been taking it for years because I've got IBS and UC , it's not really helping, I've been told to take two instead of one but it's not done a lot yet x

[Poppylop]

Thank you so much for replying Susiquew, it's such a relief to know that someone else has experienced the same side effects, even though the Dr told not to worry about strokes you do still have it in the back of your mind, is it or isn't it, like you my dad had heart attacks and passed away from a massive one and with my brother's both having strokes and my mum had a mini one year's ago it does worry me. I don't know yet if I have GCA , the first Dr i saw said she suspected it because of headaches and some scalp tenderness, the next two Drs have both said they would be surprised if I have got it, at our surgery you hardly ever see the same dr, it's all changed there, I had the same dr pretty much most of my adult life but it's all different now. I have my rheumatologist appointment on 19th september, the Dr told me i should have a scan while I'm there, fingers crossed he will drop my dose. How long were you on 40mg? for. I've noticed this morning that my thighs feel a bit bruised in places, I suppose that's another side effect😣, I'm so glad I found this forum because if I hadn't i would be feeling rather scared not knowing if these things are normal or not, thank you

[Hidden in reply to Poppylop]

Hi poppylop...just wanted to say for me bruised feeling thighs are part of PMR.

[Lancashirelass07]

Hi, hope you are feeling better this morning, I was dx more or less the same time as yourself. Also feel I wish I hadn't started the pred. Still feeling rotten ,although the pain has eased I am constantly worying about everything you said , and getting a lot of dizzy spells , but have always been prone to them when anxious. Have just started a taper to 15 mg, but think I should be better than I am.

Really am miserable ,but we have started on the pred road so expect we have no alternative but to carry on .

Thank god for this site it's the only thing keeping me going .

The brain and imagination keeps running riot ,I think that makes things worse!!

Must stick together ,and keep fingers crossed for better days.

[Hidden in reply to Lancashirelass07]

You must remember that the condition itself is still very active. The pred is just mopping up some/most of the inflammation. But for a long while the inflammation was at work. I had fatigue, head sweats, piriformus pain in the first few months. These were part of the PMR add ons. One thing I had learned with illness is that sometimes it's worse before it gets better.

If you cut all sugar and processed carbs ....that will help make you feel better. At the moment the pred is spiking your blood sugar randomly. As someone with diabetes I can tell you high blood sugar can make you feel terrible. If you can remove the foods that add to these spikes by eating low carb it will help overall. I hope you feel better soon. 🌻

dietdoctor.com/low-carb

[PMRpro Ambassador in reply to Lancashirelass07]

As Poops says - the illness itself is still very active still and may be more active than when you were diagnosed and put on pred. Having just had a mini-flare I can say - it makes you feel rubbish!!! Pred isn't always to blame though it is also no innocent in the easly days. It does get better but it takes time - in a year you will look back and see how far you have some and wonder why you thought it was so bad back then.

[Poppylop in reply to Lancashirelass07]

Hi Lancashirelass07, it's a nightmare isn't it, so worrying having all these horrible feelings, I'm glad you are tapering, I hope I will be soon, what dose did you start at, and yes we definitely should stick together x

[PMRpro Ambassador]

People may "know more" - but practical experience is always more valuable than theoretical "stuff".

[Lancashirelass07]

Hi. Poppylop I started at 20mg. Only three weeks ago. But can't seem to relax ,my mind going round in circles , if I could conqure that, I would feel better. ,don't know about you full of what if,'s

Know I will have to pull myself together,we have a long road ahead

Not sleeping at night doesn't help either. Keep smiling !!ha ha !!as they say

Wish I could get a good G&T. Cheers

[PMRpro Ambassador in reply to Lancashirelass07]

Why not? I have one in my hand!

[Lancashirelass07 in reply to PMRpro]

Is it ok with the pred. Thought it made inflammation worse?

[PMRpro Ambassador in reply to Lancashirelass07]

Why? Use diet tonic and don't go mad - no carbs and you will enjoy it. I've done no alcohol and it made no difference to me, just one more pleasure taken away. Everyone is different so you have to try. But deprivation just makes it all feel worse.