Started treatment prednisolone Dec 22..Last few days been having a heart flutters/like a feeling something is going happen...
Before I found out I has polymyalgia rhumatica I was experiencing restlessness at night, constant weeing every few hours so not sleeping well at all...
Was told it could either be my new prognosis diabetes or pre-menapause....Great..
I've been surfing with osteoporosis, nerve damage for nearly 20yrs been on gabapentin, duluxatin, paracetamol....
Palpitations are a well known side effect of steroids. My rheumatologist seemed quite disappointed I did not get them! Are the steroids working like magic? I was suddenly back in the land of the living having taken them. They were a godsend.
Hello and welcome, you’ll get a better welcome reply form DorsetLady, more like a package. All I’ll say is it is pretty normal to feel restless and a yes, like something is about to happen, when you start Pred. It’s dose related so what is your dose? It really helps to fill in your history in the profile area so others can tailor their replies better.
If you have had uncontrolled diabetes your needing to wee is not surprising and hopefully you will find relief when you have better sugar levels. Regards wee though, you do need to be well hydrated because Steroids can irritate the bladder too so keeping the urine dilute is helpful here. Regards the diabetes, how are you being treated and did this treatment start before your steroids started?
How are they supporting your bones if you have osteoporosis? Have you been started on vitamin D?
Thankyou for your advice..Prednisolone 20mg daily..
Metformin was in August, so new to all this really...
They gave me vitamin d for a few months but then they stopped me...not sure why...
But the last month I've been supplement myself with vitamin d..
Has your bone density scan been done recently as a baseline before Pred? I presume that is what diagnosed your osteoporosis.
If you have bone issues they should be checking your vitamin D levels to see if you are achieving good levels with what you’re taking. Pred tends to thin bone so really they should be on this with your history.
My bone density was first done many yrs ago, when confirmed osteoporosis...My recent GP said he will see me in January now, but was going to check to see if I need to take anything for my osteoporosis...
Was it osteopaenia or osteoporosis?
Osteoporosis
I thought I’d ask because on the face of it, it seems like you’ve been given the diagnosis of osteoporosis and left to get on with it. Was it very mild? Did you have any treatment? I’m surprised that given your Pred and history your doc hasn’t requested a DEXA scan as a matter of course if it has been some years since the last, because a baseline in the first 3 months of Pred would be useful to know how much the Pred has affected it later. I had to push for it but it was very useful to have done when I had it repeated 3 years later. In a way I’m not surprised you’ve been left because I had my ovaries removed at age 41 and all they wanted to do was give me bone meds when I started on 60mg Pred and not check if anything had changed from 12 years previously. You say you are pre-menopausal, it would help if you put your age in the profile if you want to ask any more questions because age can make a big difference. Your doc should be able to look at the NICE guidelines about steroids and get bone meds to get their answer. A lot of us use the DEXA scan to fight not to go on bone meds but with a previous diagnosis osteoporosis it’s a different matter I’d have thought. As I said, do ask for a vitamin D level check. I was found to be very low age 54 which won’t have helped my bones. I was given standard vit D loading therapy but ended up low again after being on 400iu, so now I take 1000iu.
Pretty much, I'm 51yrs now but I was around 40s I think. Sorry I can't remember too good, I've been in a mental abusive marriage for 20yrs and although it's been 3yrs now since I moved back to living with my parents, I'm divorced from him but still have flash backs. I had therapy at first for it but then covid hit, so it was there at the end of telephone if need me kind of conversation....I'm one of the lucky ones as my parents are great and having there daughter back home is answer to there prayers, so they tell me often...since been back home though my dad had mini stroke and had to have a pacemaker fitted and mom had pneumonia within the 4 months of being back home...they also have alot of other underline illnesses going on so I've been preoccupied with them really...sorry if I'm going on a bit....I'm not sure what my bone results was as I was told when to start and stop the meds that was it.. should I have been on them all the time then..I can't remember to tell you the truth I suffer with brain fog or blocking of memory aswell as medication that frazzle my brain..
Well, you certainly have had a rough time of it and although you have been able to move back to your parents’ that has developed into a carer situation which is stressful too. Sounds like your own needs have been pushed to one side. It is very common to have people come down with PMR after long term stress and the immune system becomes hostile to your own tissues. The trouble with PMR is that there is a lot to learn and there are different aspects to it because of side effects of medications and autoimmune conditions. People often find they have to learn a lot and direct their own care, especially these days. There is no shortage of information and advice here but it can seem like you have to do all of it now and it can feel overwhelming. Perhaps for 2023 you could make a stand for self care and control with a list to start finding out about your own care, like asking for your bone density results and trying to get a GP appointment to have it explained and where to go from here with Pred eg, DEXA scan. Can you restart face to face therapy? Is the GP caring for your PMR or is it a rheumatologist? Have you got any sort of plan for dosing? I had to write everything down and had a folder to keep track. Pred doesn’t help with memory!
My journey has been a long one...but I'm still hoping to get myself back to me or a better version of me anyway...its strange when come through what I have how you find out who your true friends were...out all them its just one I can talk to or even just meet up for coffee every other week...lately though we both have changed plans at last minute, but we understand why how each other feels at the time and not to put pressure on to meet up but be there when really needed....Anyway thankyou for your time you have shown me and I will see my GP in January for referrals, scans ect....
Merry Christmas to you and your family, and pain-free New Year..xx
Excuse me asking, SnazzyD, but as a matter of interest did your Dexa scan, after 3 years, show up any change in your bones, following use of Pred? Just interested.
I asked recently for a Dexa scan and, rather remarkably, I've just had one. Last one was well pre-PMR, some 10 years ago where osteopenia showed in my left hip. I was prescribed Alondronic Acid (AA) when I started Pred in April this year but didn't want to take it for various reasons. Having gained much useful info from this forum, I then pushed for the Dexa scan. Looks like I don't need AA , though I haven't received the result officially yet. Of course, that doesn't mean the clinicians won't try to encourage me to take AA in order to protect bones, I guess.
I have had 4 dexascans in the 13+ years since starting pred with only a small deterioration and values are still in the "no need for AA" range.
Yes, it was reading about what you had to say about Dexa scans and Pred, PMRpro, that prompted me to ask for one recently, As a matter of interest, have you always had them in Italy and have you had any trouble in persuading your doctor, or whoever, that you want one (or is it automatic for you)? Also what is your argument when the clinician says yes, you're ok now, but we are trying to protect your bones in future?
The first was done in the UK when I was first put on pred, within 2-3 months, The other 3 were done here - the regional public system uses private providers for certain things, including dexascans, I think I can just call the clinic where they are done and make an appointment - we have a co-pay system for certain things and a dexascan costs about 37 euros, whether you have a script from your doctor or not as far as I can tell. And it is tax-deductible! So I could have one every year if I wanted to and no fights to access it. I just have to get there - it's in the regional capital, about 50 miles away.
Think I'll move to Italy!
Not sure how it works in Italy - I live in the German-speaking autonomous region South Tirol!
I am suitably confused and am sent to Wiki to work it all out! Looks a beautiful place to live.
In the 3 years that I was taking Pred (starting 60mg) I lost about 3%. Still just in osteopaenic range. I had already lost 10% in 12 years up to the scan just after diagnosis probably due to being very low in vitamin D and having my ovaries out just after my first scan aged 41.
What I've read is that in fact it's the first few months on pred where bone thinning occurs most rapidly. I don't know if that's because it's when we are on our highest dose then, or if the body somehow adapts. Unfortunately I had been on pred already for about four months before my DXA scan (which I insisted on, the Dr was going to prescribe AA without investigation) and I showed osteopenia, the report my Dr received very incomplete and she interpreted it to mean I had osteoporosis. By then I'd done a lot of reading and refused bone meds. Glad I did because when I finally found out my t-score it wasn't OP at all. Within a year, half of which my pred dose was still above 5 mg, I had improved my t-score from -2 to -1.6. At the time I wrote an account of what I'd been doing which is here in the forum, as I thought it might be helpful to others, give them some idea how to protect their bones and even, with luck and persistence, improve them. I have not had a third DXA scan since, but as I had a stupid tripping accident back in 2020 and didn't break anything in spite of slamming my knee down as hard as it could go, I think I'm not too fragile!
healthunlocked.com/pmrgcauk...
I started a reply to the three answers above but it disappeared so hope you don't get this twice. I was thanking you all for your helpful info which I shall file away in my head or rather copy and paste to my filing system in my laptop! The Rheumy I saw in August didn't like it when I said I wasn't taking Alondronic Acid yet. I'm seeing him again in February so must take a copy of my recent Dexa scan to prove my point.
I have had diabetes for 10+ years and have never been on medications for it. I just use diet and exercise (sadly not too much of either recently)
As soon as the diabetic nurse saw my blood levels 52 she put me on metformin, I was then advised to join the oviva diabetes team & support (app). The couch rang me at the start and we had a 10min chat on the phone then I filled the diary in on the app daily for 12wks. I then had another blood test and my blood sugars came down to 44, the couch rang again after 12wks saying i did well, so they tell me they are happy with that and that I seem to understand my diet and weight loss, but I'm still on the same metformin. I suppose after Xmas now when I see nurse again..
Pred causes blood sugar to be raised before you even eat anything so many of us combat that with a very low carbohydrate diet, much less than the normal ‘healthy’ diet. This also combats the weight gain most people get with Pred. It might be worth having a chat with your diabetic coach regards the Metformin which you may find has too much work to do with the Pred. Do you check your own sugars?
Hi and welcome
As mentioned by SnazzyD my intro/information post …it is a bit lengthy but hopefully helpful and not too daunting -
healthunlocked.com/pmrgcauk...
..always someone about to answer questions but a lot of info in FAQs when you feel up to it, but don’t try and take in too much, too soon. 🌸
Hi and welcome.
Pred can cause palpations but so can PMR! Just to confuse the matter!
Hi there, have you been tested for atrial fibrillation? I have PMR but also afib which gave me the symptoms you are having. Fluttering feeling in the chest and constant urination which is a symptom of an afib episode. I am not saying it is but worth getting checked out as some who have PMR also seem to get some heart problems
No I don't think so...Something else to ask GP about....thankyou for the advice
I really think you should, I felt like you for a while on and off until I ended up in rhesus with a heart rate of 170bpm! When I get the fluttering feeling constant urination is the first thing that confirms it for me as I can go every 15 mins or so
So sorry! Yes, palpitations and shakes, elevated heart pressure, elevated glucose. Now doc is going to try me on Medral (generic.)
Do you mean Medrol?
Yes. The generic for that.
Medrol is the brand name - but with an O not an A
got it.
Since I cut down to 24 mgs medrol, don’t have the shakes so bad but losing my sense of taste.
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