I was diagnosed with PMR in April of this year and prescribed 15 mg Pred. Tried to reduce to 12 1/2 after 4 weeks but back up to 15 for another four weeks. Started headaches and saw rheumatologist who increased dose to 40 mg as a precaution In case GCA. Headaches stopped but horrendous dizziness and spaced out feelings together with ringing in left ear. Spoke with GP and he felt probably Pred side effects so talk again with rheumatologist when I see her - this coming Thursday. Then two weeks ago I developed an infection under a crowned tooth. I've now had two lots of antibiotics and painkillers but still don't n pain. Started with 8mg co-codamol, up to 8 a day and now on 30mg - but only taking 4 a day. Saw doctor on Friday and he says increased dizziness etc is due to all the strong medication I'm taking but it's important I continue with it. I have an appointment with dental surgeon for x-ray tomorrow afternoon with the possibility of having the tooth out on Tuesday. In the meantime, I'm getting frightened in case it's something more than a tooth infection, although the pain originally started under the crowned tooth. Obviously I can't drive at the moment and because I live on my own, I have to rely on neighbour's to get anywhere. And I worry so much about being a nuisance.
Having read what I've just written, I'm very tempted to delete it because I'm not even sure what I'm asking but I suppose I just really needed to feel I could talk to somebody - how sad is thar😟
Jan
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Janann25
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I would guess your feeling of dizziness etc is mostly from the co-codamol, I take it for OA, but can only take one 8mg tablet at a time - more than that I feel really spaced out - 30mg would finish me off!
Like you I live alone and rely on being able to drive everywhere - so it's either pain-free but not be able to go anywhere, or have pain but be able to get out! Bit of Hobson's choice really!
I also had a couple of courses of ABX early days for a sore throat which I couldn't shift, and they're not the nicest drug either! Your immune system is shot to pieces anyway, so anything and everything takes so much longer to get better,so ao would guess it's "just" an infection under your crown, nothing more sinister. Hopefully dentist can sort things out for you on Tuesday - just make sure he know what medication you're on.
Thank you so much - I've already made a very detailed list of all the medication I'm currently taking, which almost fills an A4 sheet!!! I'll make sure the dentist is fully briefed and hope that an extraction will sort it. I'll keep in touch.
Hi Jan I do feel for you like Dorset Lady I Am on my own too and yes I rely entirely on myself to drive wherever and dread the day when that can't happen? Friends are lovely but I always think they have their own lives to cope with and lucky them usually still have their husbands ! At the moment my rheumi put me back on pred 15mg but I felt ain't dizzy so have stopped taking them after 2 days as my stiff legs got better for the moment. My heart cardiologist said don't take them so I am on my way back to rheumi to see what he thinks !!! It is quite worrying and on top of it all I am organising my house sale and buying one in Newcastle. So I need to be on top form I can't remember what top form feels like? However as I keep saying most of you seem worse off so I must feel grateful and do wish you all the best. I have just had new crown fitted and all went well it looks good so I can chew a steak again although steak not good for you but what is. .?
It doesn't really help sometimes to know someone else is worse than you - we're all just human and feel very vulnerable at times. I really hope your rheumi and cardiologist can come to some sort of "agreement" over your medication - the expression "right hand" and "left hand" springs to mind!! Just make sure you don't do too much with the house move - we moved house while my husband was very ill, which meant it was all down to me, and it was unbelievably tiring. In the meantime, enjoy the steak. A little bit of what you fancy and all that........😉
Hi Jan, 4 weeks on 15mg seems an incredibly short time, I thought it had to be a long-term treatment, eg 1 year minimum? A friend of mine was on pred for 2 years. Hope you get some relief from that tooth infection soon.
Think you may have misread, Jan meant she'd been on 15mg before she reduced to 12.5mg, and then had to go back up to 15mg because of return of symptoms.
15mg is the usual starting dose for PMR, you then have to reduce slowly to find the level you actually need to keep your illness, or at rather the inflammation caused by it under control. That continues until the PMR goes into remission. Tgevus not cure for PMR per se.
If your friend was only on for 2 years then she/he was one of the lucky ones, sometimes it's considerably longer.
Thanks DorsetLady, you're right, I see what I've done, I've begun to comment then gone off course a little. Yes I think my friend was very lucky indeed.
Glad you didn't delete the post- sometimes it just helps to write it all down:- sometimes we find the answer by re reading what we've written and sometimes it just helps to know that others will understand our confusion/ frustration/ anger/fear.
It must be very difficult living on your own, not wanting to make a fuss and also being worried about the tooth situation and dizziness. I'm sure as you say all the medication that you're on at the moment must be contributing to the dizziness. I had an infection in my tooth some time back and ended up having it extracted. It went fine and I didn't have any problems or flares. Just needed to rest a lot afterwards.
I'm sure you'll feel a lot better once you've got to the dentist and they can confirm the infection and extract tooth on Tuesday . As you say take a list of your medication, try not to stress( makes our symptoms worse) and take each day as it comes ( easier said than done!)! Let us know how you get on. Do feel you can vent feelings and support here is very good.
What a lovely reply - thank you so much for your understandng. I think I've allowed myself to start feeling sorry for myself - which definitely isn't a good idea! I'll let you know how it goes.
I was the same as u but I now go to dentist every 2 months and have teeth cleaned I also have a foggy feeling in the head about 2 hrs after taking steroids am on 20 mg a day be positive it will get better
Thank you - I'm off for assessment and x-ray this afternoon so,hopefully it can come out tomorrow. It's actually a crown I had fitted about TWENTY years ago so it's done very well!! It just all seems so much worse than usual because of this rotten illness - but then, I'm sure you know this yourself. 😉
Yes, I take mine about 9am and it never really goes, just gets a bit better in the evening. But then, I take 40mg so that's probably why - trust me to be different!!
Jan
Agree with Jackho. when you feel rubbish it all starts spinning round in your mind. it is bad enough with PMR and toothache.....adding dizziness is nightmare. I am lucky that cocodamol doesn't cause probs but my sister can't take it. I know it's a crown but try orajel to numb area.
Every message I have put up here has almost been deleted. it can be daunting sometimes showing your vulnerabilities. But we are all in a similar if not the same boat. I remember you are doing things alone now as well so keep writing.
Not sad at all - if you can't scream at us, who can you scream at?
I can't really help just now - but I promise it WILL get better. I had a summer a bit like that 5 years ago, I used to sit in the GP surgery with tears rolling down my cheeks. I'd had 3 weeks in hospital, been put on a statin that made PMR look a dolly, was on crutches and was faced with a 1000 mile trip to our daughter's wedding where the MOTB just felt and looked fat and disgusting. The photos I'm in are worth a miss but I survived! In a year you will look back and it'll be just a dark memory. But I know that doesn't help today.
Like DL I'd suspect the co-codamol of a lot - horrible stuff. Are you on alendronic acid? If so, stop it for now. It isn't essential in the short term (I'd say it wasn't essential in the long term either but no doubt the average doctor wouldn't agree!).
Thank you so much for your encouraging words - one of the worse things at the moment is not knowing what is causing the spaced out and dizzy feelings, the Pred or the antibiotics/painkillers. I'm just worried that, if it's the Pred - which means I definitely can't stop this for a long time - how on earth do I carry on with an even relatively "normal" life? I have difficulty in being able to balance on two feet in the house, let alone go out!! I know I'm being very pessimistic but it's hard to feel any other way at the moment. Yes, I'm definitely feeling very sorry for myself ........
You will get to a lower dose - and you won't have to tooth problems for ever which will remove a lot of potential cr*p. But you are right - it is ALWAYS the not knowing that is the hardest.
Sorry, just realised I didn't reply about the alendronic acid - had to Google it to find out what it is!! No, I don't have to take it. I had a Dexa(?) scan about 6 weeks after starting on 15mg Pred and my bones were fine. So that's one less thing to have to worry about 😉
Jan
I know my sister and a friend have to go to bed with dizziness and nausea with co-codamol. trying to say its a good chance its just c-c causing it. i have taken 1 tablet of co-codamol and 1 of plain paracetamol. good luck x
We've all been there Jannan, when it just gets too much and it begins to overwhelm us. I am glad you didn't delete your post. There is always some bod out there feeling the same way and now feeling less alone and up against it. I hope the Rheumatologist sorts out your dosage and diagnosis soon. That much Pred is no joke unless it's saving your eye sight. Of course infections run rampant with our immune system being suppressed, perhaps this explains your rotten toothache. I have just had antibiotics for the same thing, successfully luckily. I know you hate being a nuisance, but good people like to help others, it's a rewarding thing to do, so let her. Let us know how you get on. Chin up!
Hi Jan. I'm so sorry you have all of this at once. Thankfully you have a rheumatology appointment. Please let them know how you are feeling. They sometimes see the condition and not always our way of coping. Your neighbours would not help you unless there cared about you. Believe me feeling guilty is not good for you but I understand why you would. I'm thinking of you Jan and hope all goes well at the dentist. Take care x
Just come back from assessment at dentist and it's definitely coming out tomorrow - I was all big and brave until it actually dawned on me that IT'S HAPPENING and now I'm a quivering wreck!
bless. it will be so much better. I had two out a couple of years ago having ground to pulp. it was just local.. ..never felt a thing and believe me I am allergic to dentists and needles!!
It was like a new lease of life. One had an infection but I went back and they cleaned it and never ever regretted it. am keeping my fingers crossed for you....dont be tempted to drink through straw after..
The dentist said he would normally ask patients to double up on Pred on day of extraction but then said to check with doctor first because of my high dose. I very tactfully said that my doctor wouldn't know the answer(!) and that I'd ring rheumatologist. I managed to speak to her secretary who then put me through to a doctor on her team and was told "NO", just take normal dose. Nothing's ever straightforward with this illness is it?😉
It used to be that it was recommended to take extra - but the more modern opinion is that you take your normal dose and they keep an eye on you for any signs of collapse. And if you are on a high dose there's plenty sloshing around to cover stress.
Sorry, I'm not sure what you mean. Do you mean "collapse" in terms of a flare due to the stress to the extraction or do you literally mean a collapse following the extraction? I have a friend who will drive me home but I'll be on my own from there on - I shall be really worried if there's a chance something nasty could happen then.
In the sense of becoming unwell. I think it is extremely unlikely you will become unwell because of a lack of cortisol - you have plenty circulating even if it is the artificial sort. I should have been clearer - I meant for larger "interventions" like surgery in hospital.
I had a wisdom tooth out a couple of years ago - I was terrified as I'd been on pred for 6 years and also am on an anticoagulant. The dentist was totally blasee - and he was right. Absolutely no problems and no bleeding either.
Hi Jan I'm a rotten coward too. Try to imagine yourself back home tomorrow night when it will all be over with.. I assure you that you will be so exhausted with all the stress ( mind going crackers etc ) that you will sleep like a baby. Probably feel a bit sore in the morning but proud of yourself. I and all the others will be thinking of you. Take care remember just try to imagine yourself tomorrow evening when it's over.
Hi Jan- you have made me feel that at the moment I've been let off lightly with yo- yoing between 15 and 10mg for last 9 months- not yet been affected by GCA.
This forum is so supportive and understanding and I have used it as a lifeline.
I've also used Samaritans as they are so good at listening - they allow you just to pour out your feelings but they obviously can't offer the practical support of this forum. But you can call them at anytime, any day to talk. 116123
Morning! I didn't feel up to posting yesterday so have only just seen your question. I've actually posted a more detailed reply because other people also wanted to know how I got on - I still can't believe how caring this forum is. Anyway, yes it's done. Not nice and I'm still on painkillers but I was expecting that. Just have to get the PMR/GCA sorted now!
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